Oh Wheely . . .

Urology

2012-02-06T13:43:00.000Z

This afternoon I have yet another urology appointment and I'm going to have to be real assertive. For the last 6-8 months I've had a really persistent infection that passes from kidneys to bladder to supra-pubic and then back in the other direction. It has been treated each month with a plethora of antibiotics that are not hitting the spot and I've had enough.

The wound is weeping, inflamed and sore. My bladder is uncomfortable, irritable and jumpy and I have a grumbling low backache typical of kidney pain. The antibiotics sometimes ease the discomfort for a while and sometimes not, but the strong painkillers I'm given make me constipated which exacerbates my bladder difficulties.

Today, I have been warned that, it is likely they will need to remove my supra-pubic catheter for at least a month to enable the wound to heal and for the infection to finally go. I may also need intravenous abx and, in around six weeks, another general anaesthetic to have a cystoscopy and the supra-pubic resited. Meanwhile I'll either have to tolerate a urethral catheter which has caused me repeated urine infections in the past or go back to having 4 x daily carers and frequent pad changes. Neither is ideal.

However, today something definitely has to happen. I'm feeling stubborn and I've had enough. Today I want action. More pills is not an option, more appointments is no good. Today is the day a decision will be made one way or another.

So it's possible that I may have to come to terms with being an inpatient once more. A possibility that fills me with fear, dread and loathing, but one I can see fast becoming unavoidable.

I HATE hospitals!

H x

Southampton #accessfail

2012-02-05T20:30:00.000Z

I'm just back from a brilliant three days away in Southampton that blew a few of my cobwebs away. A much needed break from these four walls and some quality time with my OH. Combined with a few visits from the Mental Health team and some large doses of medication things are starting to look less bleak.

Unfortunately Premier Inn, despite previous promises of retraining and policy review, failed to live up to their word. Having already booked (as requested) through the reservation booking line, I personally spoke to the branch of the hotel concerned to check their facilities and was assured both by the branch manager and the receptionist that my requirements were both available, and reserved, for the two days of my visit. I double checked. The specific type of room that I needed for access was definitely reserved.

The day before we travelled I checked again. Totally unnecessary to check, I was told. Yes the room I needed was absolutely all ready and waiting for me, empty a day in advance, for the next day.

You know what's coming next don't you?

On arrival we were impressed. A lovely hotel, good location, disabled parking, very friendly, attentive staff, a good start. In the room we were pleased. Lots of space, pristine clean, huge bed, big bathroom (cursory glance - mistake). We quickly unpacked, having previously booked a film online we knew time was a little tight, and were about to head out for lunch when I spotted the bath.

I don't do baths!

I. Can't. Stand.

I suppose I could have rolled in off the edge of the bath but there is no way I'd ever get out again without a crane. And why should I take that risk. I'd booked. And checked. Twice. What do I have to do to get what I need?

And why should I have to? Anyone else (able-bodied) would just book and go. No wondering whether the room would have a toilet, or a bed, or a bathroom. It's standard. You book, you turn up, it's there. So why do I have to put up with paying for a room I can't pee in, or wash in, or even get alongside the bed in occasionally. It's just so unfair. So ridiculously unfair.

Just writing all this is making me sigh deeply. I'm so fed up with checking and re-checking, being assured that all is good, only to be disappointed when we arrived. People on the scene bend over backwards to try and compensate, make it so we can manage, lift the chair or whatever but they are so missing the point. The hotel staff could not have been sweeter but we'd unpacked, had places to go and people to see. Didn't need the fuss and the hassle yet again.

Anyway, it turned out our room was taken. Given to an able-bodied guest who wanted extra space.

So even though we had a great few days, and we still did, I made do with a wash at the sink and a shower on the last night once the other room was vacated. Even though we'd paid the same as everybody else.

However, on a brighter note, we also got to see the new Sherlock Holmes film, did a little shopping as therapy, trawled round Ikea (yum yum meatballs!), saw our eldest son for lunch, as it's near to where he lives, and having got away I'm feeling a bit brighter. Despite the hassle.

And the fact that I now have yet another complaining email to rattle off. Sigh!

So not all bad at all.

H x

Strait-Jacket

2012-01-30T16:48:00.000Z

I wonder which part of my brain/mind/conciousness is the Ego and which part is the Super Ego? Which is the devil on my shoulder and which the angel (hypothetically speaking obv - not that far gone yet!)

If this is making no sense so far check out the previous entry.

It's pretty amazing how the human brain works. Mind-blowing to think that the voice (or voices depending on the day) in my head is just a series of electrical impulses flickering around connecting bits of the big grey walnut in my head.

Do you know that human beings know more about our planet and the universe around it than what goes on inside our heads.

And that it only takes a very teeny tiny, incey wincey imbalance in minerals and stuff for it all to go tits up.

It's definitely a fact that my brain has been investigated to within an inch of it's life. Physically anyway. Neuro guy says that without actually taking it out there's no more tests they can subject me to. I say thank God for that. Unusual to find a doc ('spesh a senior one) that's not scared to say "Dunno what's going on up there".

Now it's time for the psycho guys in white coats to take over.

What's that song? "They're coming to take me away, he he ha ha ho ho . . .".

H x

Depressed

2012-01-28T17:31:00.000Z

Why is it that I dream in able-bodied? Apparently I can manage to produce glorious technicolour - but not physically disabled.

Why does my conciousness torment me in this way?

Why, when I wake up after a dream, do I think for that split-second, that maybe today . . . ?

I still try to turn over in my sleep several times a night, even though I know I can't. And it wakes me every time.

Why can I not move on?

Who says I have to accept that this sh*t is all there is? And it is pretty sh*t in my world atm.

How did I end up here, in this appalling reality?

What pills can I take to dream a dreamless sleep?

Or a sleep that satisfies?

Or a sleep that lasts more than two hours?

Or a sleep that I wake from feeling refreshed and ready for the day ahead?

Preferably several weeks of sleep, or months. Then, if nothings changed, when I wake up I'll just take another one. Or two! Or three!!

What did I do to deserve this?

Why did it have to be my life they took?

What was wrong with letting me keep the one I had?

Where did my big circle of friends go?

Why is it that the more you need friends, the less you find you have?

I guess at least the few I have left, I still have left.

Maybe the others weren't real friends at all?

Why does that give me absolutely no comfort at all?

Tonight I am going to a 50th birthday party and I would be quite happy not to go. That is more a reflection of my frame of mind than the group of people that will be there. The less people I have contact with, the less people I want to see. A downward spiral I think they call that.

And although I know this to be true, I feel powerless to resist falling. However I am going. That is something - right?

My head is in two halves (not literally - that would look silly). One half tells me to do it, go to the party, it's the right thing to do, you'll feel better when you get there, sort yourself out, your friends are expecting you, pull yourself together. Meantime the other, much more sneaky half, has gone ahead and pulled the plug anyway. And just as you relax those sneaky old thoughts creep back in no matter how hard you try not to. It seems the half that holds me together falls easily to sleep, exhausted from the pressure, but the other half just plain refuses to sleep. Night times are the worse.

My 'appropriate adjective' research for this blog has just led me to Sigmund Frued, who describes the two halves as the Ego and the Super Ego so maybe I'm not so crazy after all.

Who'd have thought it?

H x

2012-01-16T17:41:00.000Z

Not really in the mood for writing but I feel guilty for not posting a blog for ages.

This blog is meant to be my therapy but it's feeling like a bit of a chore. My mindset is gloomy, the outlook is poor. That January feeling is seeping through my bones and I'm in danger of becoming a social pariah. Boredom is my regular companion between these four walls.

You see the problem is that I have nothing to say. Nothing to offer you but my own self-pitying misery. Oh, woe is me!

Meanwhile . . .

... did you know that wild birds, who are supposedly starving out there, won't eat stale bird seed. They don't know they're born. Starving my arse! I've had to empty and wash out the bird feeder, that they've ignored all autumn, in order to start all over with another brand of premier wild bird fodder. I'm telling you this is their last chance. If they don't eat it this time that deluxe bird feeding station is going on ebay tout suite. No more Mrs Nice Guy!

In two or three weeks time we're going to stay at a hotel in Southampton for a couple of nights for a snuggle fest. Also, hopefully, we'll see our eldest son a bit while we're down there. Coincidentally the hotel just happens to be right next door to Ikea and just along from the cinema/bowling/eating complex. Surprise! OH doesn't know that little snippet yet but I'm sure he'll be just delighted to trail round Ikea pushing my trolley for me. I'm sure I can make it up to him somehow.

The bloody car is sitting on the drive waiting for attention again. When all the problems with the hydraulics started just before Christmas I was assured that it was just a small blip and nothing that needed seeing to. Unfortunately they were wrong. Again. As usual.

This week the tail gate is refusing to open, allow me access, kneel, or get off it's high horse. All of these problems, to my untrained eye, appear to relate to the hydraulicky air thingy that hisses and whooshes whenever the buttons are pressed. Even though nothing much happens, all the noises are still going crazy.
The hydraulics people have said they can't help unless I buy a battery for the remote first just in case that's all it is. Of course the battery is one that I need to order online at huge expense and, they say, it should be changed every six weeks. Forgot to mention that in the last eight months didn't they. Not helping with the lack of confidence and misery at all.

Also have booked four days in Belguim in April. OH is fascinated by all things WW1 and, since we're going there, I've read up a bit and it is quite awe-inspiring. The sheer numbers of men and animals that were sacrificed in the battles in and around Ypres are off the scale. Too huge to comprehend. There may be a few tears shed, especially at the military cemetaries. All those young men, mostly around the ages of my own children. I must try to discover if any of my family took part, it suddenly seems important to see any graves of those we are related to while we are there.

There, I tried to avoid moaning or misery.

Must go. Dinnertime.

H x

2012-01-03T15:00:00.000Z

I would like to open today's writings by wishing everyone who reads this a very happy and healthy new year. Here in the UK it is around lunchtime on the third of January so surely everywhere in the world has started their 2012 calenders by now? Even Fiji, who skipped a day and hopped across to the other side of the dateline last weekend, will be there by now. Does that make them one of the first or the last?

Welcome to 2012.

The year of the UK Olympics is finally arrived. Personally I don't have tickets for it, but I know many that do and I can already sense an air of anticipation around the country.

Locally, in Surrey, it is a great cause for celebration among road users. The arrival of 2012, and particularly the road cycling which happens to pass through our village, means that the very, very, long overdue road-surfacing must surely be done this year. For several winters giant potholes, caused by extensive ice and snow, have only been patched over, or top dressed in extreme cases. The break up of the tarmac surface causes damage to suspensions and bodywork chips and dents. Also being the root cause of many collisions when swerving to avoid the worst of them. Not by me I hasten to add although that is more my luck than judgement. To be able to drive on a smooth surface will be a luxury indeed although it will be a few more months yet I should imagine and the quantity of roadworks that will spring up all at once to necessitate the work will make travelling difficult to say the least.

Also this year is the Queen Elizabeth II Diamond Jubilee celebrations - giving everyone in the UK an extra bank holiday day off to celebrate. My OH will not get the day off (unless it happens to fall in with his rota) but he will get extra in his pay packet and there's bound to be a party involved at some point. You never know maybe we'll have one and put all the flags up!

Talking of celebrations . . . Our youngest son turns 16 this year and is busy preparing (not) for his end of school exams. This will determine whether he goes to sixth form or college next September but you wouldn't know it to look at him now. There is no urgency or anxiety in the air around him at all. So laid back he's almost horizontal. Were we really all so unbothered about our futures at that age? Is that sloth on my sofa really a seething mass of conflicting hormones and emotions? Shouldn't he be planning wild adventures for the end of school or researching possible avenues for employment or writing and rewriting his resume in the hope that his, as yet undiscovered, talents can be harvested and then lovingly nutured by some huge multi-national conglomerate. Maybe next week eh? After he's finished playing on the Xbox.

So another year stretches ahead with all it's wealth of possibilities yet to come.

Bring it on!

H x

On The Up!

2011-12-20T21:32:00.000Z

After last week's debacle (see last post), I was very down. But not for long.

See, I really don't enjoy driving. Never have. In my mind it's a necessary evil. And all this car hassle isn't helping. So it was a good twenty-four hours after the offending tyre was finally fitted before I summoned the strength to reconsider whether I'd ever drive again.

And it's just not in me to give up on it completely. Not this week anyway.

So that's why, tomorrow, I'm off up the M25 again for another try. I can do it.

I'm not letting this bloody car beat me! Gloria! Don't you dare let me down again!.

My sister is making a second lovely dinner and scrummy pudding for us which she is threatening to post if we don't get there this time. She already has a freezer full from last week.

So this evening I find myself automatically starting to dehydrate in preparation for the journey and a day in an inaccessible environment, taking a codeine to induce constipation (and a good night's sleep), packing my handbag with assorted painkillers, getting out clothes that are good fabrics for sitting (stretchy, soft, not static or easily crinkled) rather than attractive or smart, even though it's no different really for me. At least as far as Percy is concerned.

The fact is that, for the duration of the outing, there is no other option. At home, at least it feels like there's a choice (bed, sofa, Percy) and you never know when a short trip will turn into a marathon. It's as well to be prepared so the car is kitted out with a cold weather kit including blanket, chocolate and various catheter related essentials that I'd be in trouble without. Just in case.

As well as a big pile of Christmas presents that was the whole point of going in the first place.

Perhaps I'm missing the obvious? Never mind Gloria, what I need is a sleigh and eight reindeer!

Ho ho ho! Merry Christmas.

H x

The Journey - Or Not As It Happened!

2011-12-14T15:07:00.000Z

Yesterday I was restless in anticipation of The Long Drive today. The much planned and anxiously awaited journey to my eldest sisters was to be a milestone. Another step on the way to even greater journeys and further increased independence. I had big plans.

So much so that I had a disturbed night's sleep and woke as the sun rose, unable to sleep a second longer. With time to spare I planned my outfit carefully, checked and tweaked my hair, applied make-up, I even looked in a mirror (ugh!). And left home on the dot of eight to pick up my passengers, tight nerves jangling at the thought of the motorways ahead.

Well my poxy car never even made it as far as the motorway.

Common sense (me) urged us to take the longer route to the slip road, therefore missing out the busiest part of the M25. And whilst sat in solid traffic along this tortuous route, a fellow car driver alerted us to an almost flat tyre. Unwilling to risk the motorway to find services, and wound like a coil with pre-motorway tension, I negotiated the maze of Surrey lanes and villages finally spotting a tiny, village motor services. The very sweet mechanic pumped it up for us and announced that having driven so far on a flat tyre, it now needed replacing, but what choice did we have?

Finally, the RAC were summoned by Motability and after a 'priority' wait of almost 90 minutes they turned up without a tyre and said "We don't do tyres!". The guy offered to guide us to the nearest appropriate tyre specialist who then, of course, did not have the tyre we needed . . . and neither did anyone else in the vicinity.

There was nothing for it but to give up and go home. The tyre was pumped up again and we took the back streets, following any familiar road signs until we recognized where we were once again.

What a complete farce!

I am so disappointed with this car I cannot tell you. Every time I summon the courage to drive it the bloody thing lets me down. It is now 14 months old and there are less than 3000 miles on the clock because it's always in the garage or the back of a truck.

It will be off the road now for at least three days, while the tyre we need is packed by mule from Outer Mongolia (probably). All outings, trips and lunches are cancelled and I feel like telling Motability to stick the car where the sun don't shine.

I just don't need the hassle.

H x

No Time To Waste!

2011-12-12T23:23:00.000Z

What a busy week this week is turning out to be.

Always, even when there are no more school concerts or plays to attend, this last school week before Christmas is packed with events.

Today, I have been attended to by the District nurses who confirmed that I have still got an infection in my bladder. Had my regular housekeeper in for the whole morning and been at the hospital all afternoon seeing Occupational Therapy. It has now been confirmed that I have Carpal Tunnel Syndrome in my right wrist as a result of relying on it to do everything. Inevitable I guess. Having turned down the surgical options for the time being at least I now have a wrist support to wear for driving and whenever the symptoms are bad (so most of the time then!). Hospital transport is as slow as ever and by the time I got back it was too late to pick up the prescription for antibiotics left for me at the chemists. Still, I don't suppose one more day will hurt.

Tomorrow, I have a lovely young lady coming to finish off all my present wrapping and at lunchtime I'm taking my goddaughter out for a Christmas lunch and mooch around the shops. Hopefully, while we are out we will get a phone call from the bike shop, to say that middle son's new bike is ready for collection. He is unbearable when he is waiting for something special and gets very impatient and excited. He asks the same questions repeatedly and expects me to know the impossible like when will they ring and will I have time to collect it (same answer every time - I'll do my best. Gawd help me if I run out of time). Then in the evening my BF is coming for her dinner and a chat/cuddle/sit down. At least it'll make her sit still for a few minutes and catch her breath. No trip to the chemist today then!

Wednesday is my favourite day this week. We've planned a trip to my sister's house in the midlands and I'm driving. I'm taking both of my parents and my youngest sister up to see my eldest sister and her family for the day. It's a big deal.

So far since I've had the car the farthest I've driven is 90 minutes and this will be in the same direction and at least an hour more. My sister and my parents are the bigger challenge though. Who do I have in the front? My mum, who is likely to fall asleep but probably won't be talking to my dad (so better if they are separated. My dad, who likes to think that his way is the ONLY way. Be it directions, driving style or which lane to be in, he will have an opinion. Or my sister, who can be very bossy too (but that leaves mum and dad together in the back). I quite fancy having them all in the back myself.

Nevertheless, putting the journey aside, I am really looking forward to seeing everyone and delivering our Santa sacks as well as being in time to drop off my sisters presents for her birthday this weekend. It will be a lovely day I'm sure. But still no antibiotics!

Thursday and Friday are busy too with more appointments and another Christmas lunch then at the weekend I'm taking our youngest son to do his Christmas shopping. Talk about leave it til the last minute!

I'm sure I'll pick them pills up at some point.

Good job my shopping's all done.

H x

And The Winner Is . . .?

2011-12-07T10:37:00.000Z

A while ago I started a research project into the effects of alcohol on my sleeping patterns. If you missed it, it's here. Purely in the interests of science obviously!

To get a definitely absolutely rock solid conclusion with no room for doubt and a 'to be sure' result I mixed around the drinks. And threw in a few dry days too, but only a few.

I tried one-off days, with abstinance either side, there was a run of 'one drink' days, some of them quite large tbh. Then I started a bit earlier in the day and mixed it up a bit. Sometimes sticking to one type of drink, sometimes nodding off, occassionally slurring a bit. Mostly managing to stay in my chair but still no dreams I can recall. Disappointing.

There was vodka, rum, Baileys and Pimms to represents the spirits then a run of cider (which is the closest I'm getting to beer) and back to the spirits to finish. Never all on the one night though. Probably just as well.

The experiment drew to a natural close when the type of morning after headache became more paramount than the type of sleep I was getting. End of.

The results have been counted and verified (or are they verified then counted?). And . . .

. . . alcohol does not give me vivid dreams. It makes me slide off to sleep in an instant and then wake up after only a few hours of dreamless sleep only to toss and turn for the rest of the night. Regardless of brand or blend of ingredients.

Alcohol, does however create a strong dependence in my addictive personality, producing a lovely daytime dreamy state that is very pleasureable when the alternative is not. And that can be very destructive and hugely expensive. Also I hadn't considered the effects of consuming regular quantities of sugar in the alcohol which brings out the sugar monster in me.

So all in all a good reason to avoid the stuff completely. Shame!

H x

Apart. Alone. Separate.

2011-12-05T22:26:00.000Z

I am lethargic. Distant.

The majority of my Christmas gifts have been bought for a week or two now. Most of those are wrapped and sorted into bags for delivery apart from one or two little bits. My cards are written and posted apart from the few local hand deliveries I'm all done.

Normally the sense of relief would be great and about now I would be getting huge satisfaction from watching everyone else rush around in a mad panic.

But I'm not.

I feel separate. Not isolated exactly but . . . separate. Like I'm watching from a long way away. Like it's a programme on the TV and has no relevance for me.

I so want to be Chrismassy. I'm trying so hard to buy things and feel the buzz but it's just not happening. I've spent far too much money seeking enlightenment but I'm impervious, impenetrable. Numb!

I wish I was a tibetan monk. Living on a quiet mountain top somewhere, meditating daily, seems like a very attractive proposition right now.

I'm in pain. Physically, emotionally, mentally. Right in the middle of my being.

Somewhere out there I hope there is a person having a grand old time living the life I was supposed to get. The alternative of course is that all this crap is the life I earned somehow.

That's even more depressing.

Of course all this is buried deep inside. My family don't deserve to be living this misery too so I swallow it down and smile on the outside. All the time, hoping, wishing, desperately.

For it to end.

H x

♫ Holidays Are Coming . . . ♫

2011-12-01T20:01:00.000Z

December the first.

All sorts of annual rituals took place this morning or were set in motion today, the first day of our traditional marathon run up to Christmas.

This morning I opened my first Christmas card. It's always my eldest sister's. She must start writing them in August to be so organised I'm sure. Although to be fair my youngest son has just been to the post box with mine and the international post went a week ago. Another ritual. Done.

Also this morning along with our breakfast was the first day of the advent calenders. Always a time of great angst among the (adult) children. Which calender will I get? Will it have chocolate? Is it the biggest one? Inevitably by the end of the first week I take my eye off the ball and the chocolate disappears overnight. They swear it was Santa. One of the disadvantages of having older children is they know how to play the game to their advantage. It's not a problem for me to stress over.

Since I've been blaming Santa for getting the presents wrong for years I guess it's only fair he should have a little chocolate for his troubles.

The first day of December each year is also generally the day the supermarkets release their online shopping delivery slots. This year the last slots will come out tomorrow as Dec 23rd is the last delivery date and it's a Friday. Mine is all done.

I have deliveries booked for the whole of December including Christmas week and it just remains to fill each weeks trolley as they come around. By tomorrow evening there will not be a December delivery to be had. They'll all be snapped up by the seasoned online shoppers.

And after dinner this evening we opened the first (of many) box of mince pies. Yum yum yum.

And finally my first bit of Christmas decoration is up. We have snow on the mantle and icicles hanging down. Very festive.

Now I want the tree up but I must bide my time. My very own little helpers will soon be out on strike if I push too hard. Softly, softly catchee monkey.

I'm not sure who the biggest kid is at Christmas. It could be me!

H x

Lost In Space

2011-11-28T20:58:00.001Z

Something happened this evening but I couldn't tell you what.

My youngest son says (to my husband - not talking to me) that I was shouting at him - again! That is just not my style. I don't need to shout. Everyone who knows me will tell you that I am much more scary when I'm menacing. Quietly.

But I wasn't even menacing. He doesn't like cooked tomatoes - or so he claimed tonight! I said I'd not heard that one before and we continued with our meal and he picked out the tomatoes. End of - or so I thought. Papa comes home and youngest has a face like thunder. After getting permission to leave the table OH went to speak with him and find out what the problem was. Apparently I'd been shouting at him. WTF!!

I understand the way a teenage mind operates (as much as anyone does). He was fine til pa came home. My suspicious nature indicates to me that he may have been the target of a small manipulation. A bit of point scoring!

And thats where my mind was headed. Harmless I decided and let it lie.

Until a little later on when I needed help to get to bed. I called . . . and no one came. I called again and silently OH helped me until I asked for a kiss goodnight.

I knew something was up. He forgives me for shouting at him. WTF!!! What's going on tonight? We had a row (he says) but it's ok now and he forgives me. He might remember having a row but I don't think it was with me. Now I'm getting worried.

Recently, little things have slipped my mind. Mostly when I'm not fully concentrating or too many people are talking but this is much bigger. Am I going crazy.

OH still swears it happened. Can tell me details of who, why, what was said. Youngest son is still not talking and I'm not telling him it's slipped my mind. Imagine the tales he could tell if mummy's memory is not what it was. He'd have a field day.

Meanwhile I'm wracking my brain. Either both of them are having fun at my expense or I'm officially doolally.

You decide!

H x

It's All A Blur!

2011-11-27T17:22:00.000Z

Sunday night.

Although technically not. Nightfall tricked me into thinking it could be almost bedtime, but a glance at the clock confirms that it is in fact late afternoon.

For the last three days we have been staying in Southampton (is that how you spell it? I feel like it should have two h's in the middle, otherwise it becomes Sout -hampton or is it South-ampton?). To visit our eldest son, who lives nearby, to complete our (my?) Christmas shopping, and to spend some time alone as a couple. In a hotel.

On Thursday we had a whirlwind of a day, well I did anyway. As usual I underestimated how long twenty-four hours is and crammed everything into too small a space in time.

Gloria has been back to the garage for yet another repair (gears again) and was not returned until Wednesday afternoon (full of apologies - again) so until then nothing was certain. The return of a working (for now) vehicle sparked off a chain of events and Thursday morning I drove prodigal daughter, mum, and MIL to the railway station to travel up to Waterloo. We had four tickets to see Loose Women being filmed but until Gloria came back we didn't know if we would make it.

Seeing people in the flesh that I have only known from television is a strange feeling. Watching them in the ad breaks with the cameras off them is a real insight into who they really are, as they swear under their breath, collapse into themselves as the hangover from the night before takes hold, scratch their nose and tell blue jokes. Then as the countdown from five begins the professional persona takes over and the face is back and glowing out from your television screen. Fascinating!

After I drove everyone back to their homes, it was quickly back to ours, to pick up weekend bags and OH and then change Gloria over for OH to drive and off again to Southampton for two nights. And even that seems like a whirlwind now that we are back. As you know I don't sleep well in hotels anyway and this mattress was pretty hard and lumpy.

We stayed in a Jury's Inn that was a short walk from the shops and shopped ourselves proud.

Saturday we had to leave mid afternoon as I had a 75th anniversary to attend. My scout group from my youth (another story) had requested the pleasure of my company and I was keen to attend. But somehow we managed to get ourselves locked into the hotel's underground car park, so didn't leave there until 4pm and I was due to pick up my nephew (who was also going) at 5.30. We couldn't be late as unknown to him he would be recieving an award. A burst of speed down the motorway and another quick changeover saw us leaving home at 5.30 and pulling into the event car park on the dot of 6pm. Phew!

The 'do' was brilliant but very tiring. So many old faces and photographs of a forgotten time. Stories of escapades and adventures unravelled and time whizzed by.

Now it's Sunday and OH has gone back to work. I have a mountain of weekend washing to get clean and ironed for school/work tomorrow and even though I didn't get up til lunchtime I'm already exhausted.

Hence the wish for an early bedtime. Unfortunately there is still a lot to get through before I get my wish.

Back to the ironing.

H x

Care - Or Lack of It!

2011-11-21T14:10:00.000Z

I don't know if I've already said this, so if I have I apologise for repeating myself, but over the course of this summer and autumn my whole care package fell to pieces.

It started with the agency that provided personal care. They were taken over by a huge American company who immediately started making changes, including many redundancies among the office staff. Now I had no friends among the office staff who I thought, on the whole, were ineffective and ignorant of their client's needs. But the result of the cutbacks was that a new office, further away and already pressurised with their own area, took over the admin. Many of the care staff left in disgust.

The new office had no understanding of the geography in this area. Sending care workers many miles out of their way only to then send them back again after a single half hour call. They had no idea who their clients were or who they could mess about and who they couldn't. More staff left.

An already faulty rota system fell to pieces. My care workers could arrive at any time, regardless of arrangements already in place, or frequently not arrive at all. Occasionally a call would come through advising me of a delay but usually not. Strangers became the norm. The straw that broke the camel's back was 8 new workers out of 8 and not one call on time in a week. I'd had enough.

Once we'd a firm removals date back to our renovated home I refused the care agency access. I told them they were inefficient and uncaring about both their staff and their clients. Not a good way to run a care business.

Unfortunately, my ideal of total independence has not quite manifested itself. But with a minimum of family assistance I am able to shower, toilet, dress and retire to bed without the influx of staff coming and going, which has turned out to be quite OK by us.

Then my Crossroads care came under scrutiny.

My middle son has a care worker too, so in the beginning it was simpler to add to his hours, than to create a new plan for me. But this never got changed. Now he is working full time and is rarely around when she comes, which I have pointed out several times. The care plan needed rewriting.

And if the manager of the scheme wasn't a total arse it would have been relatively simple.

She strutted into my home and started picking apart our well-oiled machine. My regular care worker knows us well. She fits into our family and becomes one of us. She is more my friend than ever a worker and was treated as such.

The motto on their pamphlet says 'Caring for carers'. I foolishly presumed that that meant giving them a break. Doing in the carers place what they would be doing if the worker were not there. In my case that means hanging out washing, pushing a broom round, peeling veg, mashing potatoes, preparing a healthy dinner for once rather than ready meals. And she did all of that without asking or being asked. Knowing the routine so well.

The manager said they are not cleaners, not laundry-maids, not chauffers, not child-sitters, not cooks and described a typical call for their workers. It sounded like a sitting service to me but that got her cross. Try another type of agency she said and suggested three or four others - but isn't that what Social Services are meant to do. She was being well paid by SS to provide their kind of service to me and my son, and as I threw her out of my house that is exactly what I told her.

As a result of my failed assessment we now recieve no care at all.

Oh we still have a cleaner (who is treading a very very fine line) and a gardener (lovely green-fingered lady) but that's it at the moment.

Until - or unless - SS get round to writing a new care plan. Mind you . . .

. . . we are managing quite well on our own thanks.

H x

With Love

2011-11-19T15:06:00.001Z

Today is Saturday, so I make that washing and ironing day. Not that I ever get away with just one day. I'll be washing and ironing on and off most of the week, like every week, but today is the day it's a bit more intensive. All the uniforms, school and work, get washed, ironed and returned, ready to start again on Monday. Not the most exciting chore but at least I'm busy and being useful. I never thought being busy would be a luxury I yearn for, not a few years ago anyway.

Tomorrow I am off on a most enjoyable task. Tomorrow, I'm taking my BF on a shopping trip.

In two weeks it will be her birthday, and for the last few years really, she has struggled to enjoy it. You see she is a mum. A single mum, and a working one as well. So you can imagine how busy she is every day. She has three beautiful girls who she loves with all her heart and would do anything in her power for. So she runs around after them, cooks for them, cleans for them and generally does the vast majority of the daily chores. Even though they are all capable young adults and could quite easily do their full share if they put their minds to it. As well as holding down her very stressful job, and doing hairdressing most evenings and weekends.

I know she does it out of love (and more than a little desire to keep the peace), but she also has a partner to find time for and an independent, if a little elderly, mother to keep out of trouble (and hospital). Not to mention the Scout Troop she helps keep running, along with her partner (even though she has no boys), and the early Sunday morning Car Boot Sales. Her own needs come way down the list of priorities.

All she says she wants for her birthday is a day off.

A whole day where she is looked after. A day of not being responsible for the chores (but they still get done) a day of being asked "would you like a cuppa", "is there anything you need", "are you warm enough", "shall I run you a bath". A day of meals being brought in and empty plates being whisked away. Of not being asked "what's for dinner", of not being given other peoples problems to solve. Of the chores getting mysteriously done, 'as if by elves' like they do when you are children.

She desperately needs it. Her eyes are so tired.

Unfortunately, like most very busy people, she would find that a most difficult day to achieve. I'd give her fifteen minutes (if that) before she got up to check on something/put some washing on/offered to peel veg or whatever. Sitting still and spending time relaxing is a skill that takes time to master and constant practice to maintain.

So, from me, she is getting new clothes. It's not what she says she wants but it's what I'm able to give right now. Whether she thinks so or not, parts of her wardrobe are in serious need of a Gok Wan.

One day she'll get that day off and one day she'll wonder why she wanted it but it's not going to be this year.

Love you babe.

H x

Suckers!

2011-11-15T23:13:00.001Z

Why is it, when disability is involved, the price of everyday items goes through the roof?

For example, I am currently looking to replace my small nail brush (actually don't have one atm - minger). A small item you would think and easily replaced. Couple of quid in Wilco's, max. And for the majority of the population that crisis would be sorted and on to the next.

Now, to make my life a tiny bit easier, I'm thinking a brush that stays put would work better. Would enable me to use it as everyone else does. Quickly and without fuss. So I wonder if a brush with suckers is available.

Well it is, at a price, and it seems to me that I may be the sucker they are talking about.

A small plastic see through nail brush (not even coloured at all) without suckers is available for around 50p. However, put suckers on the back and it becomes a much sought after item. The price for that same nail brush (albeit now with suckers) increases by more than 1000%. The minimum online price for a nail brush with suckers, that I could find is £7.25 plus postage.

WHAT? No way! That can't be right. I am sure you are all holding your heads in disbelief, but hold up, it gets worse. Call it a hemiplegic assistance nail brush (exactly the same brush) and it's available for up to £18 or more. Plus postage.

It's diabolical. Do they think we are all made of money. Surely the majority of people who would need this type of item will be elderly or disabled and therefore - for the most part - on a greatly reduced income already without leeches sucking them dry.

Your average Joe will not know that items specifically aimed at helping with a disability (I don't know the exact criteria) are VAT free but how does that help when the sharks are circling by over-pricing equipment that would make life that little bit easier.

All for the want of a nail brush.

Disgusting trade.

H x

Dreams By Influence

2011-11-14T19:53:00.000Z

I've been having some really vivid dreams recently and I think there may be a connection with alcohol, so tonight I'm deliberately having a large Baileys (all in the interests of science of course).

'Deliberately' as in I've already drunk half a glass rather than waiting to have it presented or being coerced. Not that I need much coercing.

It's a hard job but someone has to do it and I'm generously offering to be guinea pig (all applications considered).

There are dreams that recur regularly. Like old slippers, that I come back to many times, sometimes in different guises, but always with a familiar theme and not always comfortable. Like being lost (or naked - or both) in a place I know well, or being in a big, big house and trying all the doors but becoming slowly more frightened and unable to find the exit, or being buried and trying desperately to get out before the hole is filled (or the flames get hotter).

These more recent dreams are all new material.

There's one where I start off as a child going to school. I'm living by the river or canal, water of some kind. There's a lane in front of the house that feels familiar and comes out onto the main road near where I used to live (although there is no water in that area - dreams don't tend to follow the rules of reality). To get to school I cross a large bridge - of the troll kind - that worries me greatly every time (so of course I go home for lunch and cross the bridge numerous times - dreams are like that). The school seems to double as a clinic and students are kind of nursing staff. Then I am older, visiting the clinic for appointments and being examined by young students and noticing the instruments they use are of the Fisher Price kind. All the time more and more of the town I pass is under construction until the whole town is taken over by piles of those large drainage pipes you can sit inside.

Then I am older again and living in the pipes as a couple. Trying to find a pipe of our own along with lots of people who gradually become alien creatures who slip and slide through the ever increasing pipes. The pipes are changing too. Becoming smoother, more sinous, more serpentine. Eventually, the town reverts back to a town centre I recognise from my childhood, and I try to catch a bus home but am forever getting on the wrong bus as the numbers keep changing. That goes on until I wake, exhausted from living a whole life in one night.

Another starts off at the end of a holiday in Wales. We are on bicycles and I have a big old trike with a tow bar pulling a boat. Don't laugh! It's a viking long boat! Complete with oars. There's three of us but who the others are is vague. I just have an impression that there's another bike and someone in the boat, rowing. It feels a lot like my SIL is involved somehow - but that is just about the most unlikely person! There is much changing of tyres and discussion of the best way to pull a boat.

A newcomer turns up with another boat, a canoe, paddled across a large puddle in something like a quarry that we've slept alongside on the long boat. The puddle strretches alongside the road so we load the canoe and bikes (more discussion on the best way to stack bikes, trike and canoe) until we reach Camden High Street. I don't believe I've ever been there but the road sign was quite specific. We're back to cycling, down a long hill and at the bottom it is finally getting dark. We come across a hall (that reminds me of those old, tiled, public toilets) where children are welcome and entertainers are provided so the children (where did they come from?) are enrolled while we get a massage and a hot meal, then fall asleep.

Now we are cycling across central London and I can see Nelson's Column (that looks suspiciously like the Eiffel Tower) in the distance. Yet again, there is a bridge to cross. This time it is Tower Bridge - the one that opens for boats - but every time we try to cross it lifts and we slide back. We try to swim but the tide defeats us, it seems we'll never arrive. Then it's over again and I'm awake.

Two very different dreams but with some similarities in hindsight. Both are fairly arduous journeys and both involving difficult bridges to cross.

All interpretations welcomed.

Any dreams submitted for perusal will be interpreted with tongue firmly in cheek.

H x

2011-11-10T22:04:00.000Z

Yesterdays low was dealt with today and I got stuck in to all the jobs that seemed so far beyond me. There's nothing like a bit of fresh air and re-organising to clear away the cobwebs. For me anyway.

After the builders spent four months building and adapting our home, the back patch was in a sorry state. Badly damaged by digger tracks and rubble, and more overgrown than it's been since we moved in twenty years ago. Tender loving care was desperately needed.

The patio slabs removed from the previous patio are still piled up and will need re-laying eventually along with some left over paving bricks from the new drive. Also, an apple tree bought in haste at Wisley Gardens after the Autumn Festival, needs a suitable spot preparing. All this and a need to be busy outdoors initiated a horticultural re-designing frenzy, all theoretical so far (apart from the tree).

Then on Tuesday evening my BF and I sketched out a rough plan on the spur of the moment for the garden-to-be. So when my lovely gardening lady came this morning, expecting a spot of weeding, she was met with a large mug of coffee and plans for the coming year. As she got stuck in we chatted about the new plans and she tried translating my scribbles, and with her help to get me going I started marking out the rough shape and size of the new lawn (meadow) with plastic plant markers.

Before she left we had a hole all measured out, dug and manured for the tree (which we pick up tomorrow) and the front garden tidied and brick raised bed repaired and refilled with home-made compost.

Later on my youngest son helped me clear and tidy both sheds before finishing marking up the lawn and getting an idea of the size of the new beds to be filled. He also got stuck into making dinner before I came in from the garden. He is a good boy really.

This winter I'll need a proper scale plan drawing up with ideas for planting and all the new beds digging over before Spring. Then once the patio and path (did I not mention the path?) are laid a plant shopping trip will be in order. I love shopping!

Hopefully by the time next Summer comes we'll have a garden worth looking after once again.

I can't wait!

H x

2011-11-09T19:12:00.000Z

We (I) celebrated Gloria's return to full health (touch wood) with a shopping trip. My god-daughter and I visited that haven of fashion - Primarni! We filled our basket with total abandon and riding on the feel-good shopping vibes drove home without a care in the world. And on the way smashed off the nearside wing mirror. I know. It was my own fault. Just don't say anything. You couldn't make it up!

Today I am very tearful and frustrated. There's a huge ball of tension in my gut that needs an outlet and I'm scared one of the children (or OH) might trigger it so I'm avoiding them. I'll head for bed soon but they won't understand. They'll probably think I'm tired or grumpy or sulking but it's kinda my way of protecting them from my rage inside.

I wonder if it's a manic phase? This frantic rush of ideas, this fierce need to be actively producing results. It feels like pure energy. I don't need sleep, I don't need to eat. I really, really, really need to act on this impulse. To get the pictures on the wall, to finish the garden, to build a wall, to bake a cake, to sew some curtains, to clear the sheds. To manifest the ideas I have into useful, productive activity. And my inability to complete, no matter how much I try (and I do try), even the simplest of these impulses produces this hard ball of frustration that builds over days and months and so I cry.

Is this normal?

Not the crying. I mean this need to pick up a drill, a saw, a blender, anything. To not put off for tomorrow that which I could do today. This overpowering urge to construct, to complete, to finish what I've started. This rage.

A family trait?

It certainly is a trait to strive for perfection, to settle for nothing less than exact. Not so much the pressure to complete though. The burning need to see a project through regardless of day or night, mealtimes or demands from children.

Or just my hormones? A menopausal woman's excuse for a blub perhaps?

A side effect of anti-depressants?

Unlikely, as these episodes of frantic activity have been around most of my adult life.

Depression (so far) comes with lethargy, slothfulness, hibernation. A slowing down of movement and absence of motivation. This is like the antithesis of depression. A sudden lifting (or masking?) of symptoms but replaced with huge frustration and ballistic rumblings, accompanied by outbursts of irrational emotion in waves.

And the most distressing realisation.

I may never complete another project again!!!!!

(and so the tears flow)

So sad!

H x

Gloria AGAIN!

2011-11-07T14:15:00.000Z

Eventually Gloria came home from the garage. She was away for 8 days in total and although I rang every other day more or less I never really got to the bottom of what went wrong. Quite specific questions were met with vague and evasive answers. I don't know whether they thought my addled female brain couldn't cope with the truth, or they felt avoiding the nub was somehow to their advantage. Making me all the more suspicious about who was actually responsible for the damaged battery in the first place. Anyhow . . .

She came home.

It lasted all of twenty four hours before we discovered a new fault (which I suspect was also man-made).

On the Friday my OH drove me to hydro-therapy without any difficulty, unless you count forgetting the shopping that we needed to return while we were out. Which was a nuisance but we could always go the next day. The car was fine.

On Saturday OH and youngest son changed the car over to wheelchair mode and off we went to return the shopping, happy in the knowledge that the car was fine. Well in a straight line it was fine. If a bit wobbly. Indicate left and pull out quickly into the Saturday morning, fast moving traffic, on the main road. Uh-oh no steering. Up the kerb and now facing the fast approaching, on-coming traffic, everything came to a fast stop. How fortunate that everyone was paying attention at that moment. I was steaming.

How can a garage get it wrong so many times? Surely they test drive the car? I don't see how they missed it, I really don't. Complete negligence.

Fortunately this time no one got hurt. The car reversed up into the turning we'd emerged from, thank goodness there was no one behind us.

This morning I rang at 9.30am and left them in no doubt how angry I was. By 12.30 the mechanic had driven down from the garage and fixed it. A small job he said. Not so small when you consider the possible consequences I replied.

Now Gloria is on the drive and hopefully back to full health but I'm not sure about taking her out. Certainly not on my own and certainly not without a second driver in case of further breakdowns.

It doesn't take much to damage a fresh coat of confidence. You need to give that top coat time to dry.

I'm starting to wish I'd never tried. Is it worth all this extra hassle?

H x

Poor Me!

2011-11-02T11:16:00.000Z

I hope you get this. It's hard to explain.

My world used to be interesting. Expansive and diverse. Colourful and full. With meaning and diversity.

I know I've beaten this drum before but today I feel particularly small.

Time was there were many different groups of friends. The ones from work who I liked spending time with but rarely socialised outside of that arena. The ones from mother and baby clubs who I still see five or six times a year for a takeaway. The group from ante-natal who I keep in touch with on FB and phone (mostly them ringing me - hopeless case). The Gang - you know who you are - of parents from Pink reception class. The ones from adult ed. The ones who are friends of friends of friends. And of course the Elite. The inner circle of special friends who are always there, whether I need them or not (especially not), and who I hope always will be.

The people I see on a regular basis now ie at least once a month, are outnumbered two to one by health professionals. I know not seeing people doesn't make them any less of a friend. I know any one of these (well maybe not any) would come if I asked them. But . . .

My social skills are crap. A conversation held on more than one level excludes my participation. My concentration can't take it all in. Even one to one I struggle to focus some days. Words elude me, topics slip from my grasp.

Am I avoiding social situations? Probably.

My world has become so small. My home is my fortress and four days out of seven I stay in it. Alone (my daughter's here, asleep, or awake but slumped in her pj's). Once a week there'll be an appointment, maybe once a week a trip to the shops. Hopefully once a week someone will visit (BF always comes- love her to bits).

Perhaps the dark evenings are making me maudlin, or maybe I'm under the weather.

Don't worry. It's not a drepession kind of thing. I'm not miserable. Just feeling isolated today.

Have an appointment later.

By tomorrow I'll be fine.

Moan over.

H x

All Change

2011-10-30T19:37:00.001Z

Today is the end of British Summer Time. Every year our clocks go forward by an hour in the Spring and then back again in the Autumn. It's something to do with farmers and making the most of the hours of daylight but it is very outdated. So this morning at 2am all British clocks were wound back (most of us did it thre night before or waited til the morning I should imagine) to 1am to do that hour again.

For me it's a qaint tradition, too many of which seem to be dying out, that harms noone and doesn't cause me too many difficulties. In a few days I'll have forgotten that the hour change has happened and it'll be business as usual.

On the day it changes however it's hard to adapt. This morning I got up at 9am, a bit of a lie in for me. None of our clocks were done so the ones I could reach, on the oven etc, I wound back, bugger. Now it's 8am and my lie in no longer exists. An hour later at 9am (again) the heating clicked off because this time yesterday it was 10am and I can't reach to change the timer. Doh!

By 11am I'm starving. I know it's psychological as I rarely eat lunch anyway but as it's autumn clock change day I'm acutely aware of the time. I have a drink and an apple and keep busy. At 1pm we go to the cinema to watch the new Tintin film (I didn't know it was a cartoon). Not my cup of tea but the boys enjoyed it. By the time we get home it is nearly 4pm and we're all getting irritable now as dinner should be looming.

We normally have our main meal around 6pm on a Sunday as my OH works weekends on and off. Today we'll eat early. Dinner gets to the table at 5.30, one hour and forty minutes later, not bad for a full roast.

By 7pm (8pm remember) I'm heading for bed. The stress of being all out of kilter has done me in. Hopefully I'll sleep well tonight and by the morning I won't even notice the change. At least I hope so because we're all back to school and work in the morning so that's going to be a difficult early start.

By the end of the week noone will remember the hour change except for the dark mornings. Until the Spring when we do it all over again the other way.

And the government is talking about doing away with the hour. What a shame!

I really like that we're different.

H x

PS Still no news about Gloria :o(

2011-10-28T16:54:00.000+01:00

Gloria was taken off to sickly car hospital on Wednesday and we haven't heard a dickie bird. A great big lorry from National Rescue came to carry her away and they had a right fun time trying to get her onto the back. Quite apart from the complete lack of power I shouldn't imagine they often see such complex adaptations. Lots of head-scratching ensued. I'm glad I wasn't here. I think I may have cried.

A couple of months ago I had a routine appointment to see the urology specialist and he was keen for me to try some botox injections into the bladder muscles. We have not been terribly successful with managing my incontinence and it was about time something changed. Although I very nearly changed my mind when he outlined the procedure and I found out another general anaesthetic was necessary.

So at the end of September (the day before moving house) I was back in hospital as a day patient, ready to battle with any doctors who think they know best, for yet another cystoscopy - this time with botox.

And for the first time everything went fine. There was no time for messing. Transport was late as usual but that meant no hanging around. First one in and minimal after effects, very little pain, and shortly after lunch I was taken home, ready to battle with the next day's removals. The initial soreness eased over two or three days and there was a settling down period where not much seemed to have changed but for the last couple of weeks I feel like I've turned a corner.

If this turns out to be a good solution over the next couple of months, The doc will then arrange for me to return for regular sessions a couple of times a year but that has to be better than the alternative. For me anyway.

Oh and I've just got back from hydrotherapy. After the first session of six weeks I didn't hear from them and presumed, as they had intimated, that there was a long wait for the next lot. Turns out I needn't have stopped going. Although normally six weeks is offered, I am one of the exceptions and can continue indefinitely. How great is that? Hurrah!

If I hadn't bumped into the hydro-physio round the shops I would never have known. Apparently they were all wondering if something terrible had happened and didn't like to ring in case. Meanwhile, we were just sitting waiting for the phone to ring. What a load of chumps! Serves me right in a way. I am always banging on about good communication being the key to good services. Ha!

The break between sessions has really highlighted the need to go regularly. My stiffness is as bad as it was in the beginning six months ago!

I'm really gonna feel the stretch tomorrow.

H x

Gloria Bites The Dust

2011-10-26T11:35:00.000+01:00

Serves me right!

Just as soon as I commit myself to enjoying my new found freedom it all goes t*ts up.

Gloria has been part of the family since she arrived all new and shiny at the end of May. Regular readers will know that since then she has broken down three times and needed recovering twice (both during a lesson - so embarassing). On top of that she has had a mechanic called to the house around another four times for minor faults. Every time they ask if I can drive to Hemel Hempstead and every time I say no.

Well, why should I? She is a brand spanking new Volkswagon Caravelle Nevada (Google it - so pretty) executive model, with leather, heated front seats and individual climate controls. Very nice! But should she be breaking down at all? I think not.

Why should I expend my time and money travelling around the M25 for an hour and a half to them, when the faults so far have perfectly easily detectable had they looked but potentially life threatening to me. The brakes have failed, the steering faulty, the gear change loose and wrongly adjusted, and I am still unable to use the passenger lock down despite them having my chair for three days to alter and check measurements.

Last week I took my BF and her fella to the Autumn Festival at Wisley Gardens. "I'll drive" I said, eager to show off my superb motoring skills to all and sundry. It was an early start but I was sure I could do it, and I'm sure I would have, had I remembered to wake up in the first place. So after delaying everyone with my tardiness we all piled into Gloria and she wouldn't go. All bark but no bite. Engine running but no oomph. This has happened before so like last time I turned everything off and tried again. Great! All fine and off we went.

We had a lovely time sampling all the autumn produce. The ciders and cheeses, the olives and roasted meats, coffee, cakes and especially the apples. The apple tasting was my main reason for going, to choose a tree for the garden. By late morning we'd had enough and headed back to the car. This time the computer that controls my driving system froze. An alarm starting sounding and things weren't looking good. However, we had brakes and power so we took the chance and drove home quickly, while we still could.

Well the computer remained frozen and the screen stayed on all weekend, draining the battery so flat that having unlocked her I now can't lock her up again.

On Monday the RAC were called by Motability and the diagnosis is not good. Gloria is in a dangerous condition and must not be driven, the paperwork says. Something about the battery being fractured and being as everything in her is electronic that is BAD NEWS. She needs a new specialist battery (it would be wouldn't it) and all the electronics checked and reset

So now it's Wednesday and quite appropriately the weather is gloomy. Today she goes off for the third time back to the garage for a thorough check up (I hope).

Maybe it'll be third time lucky. All fingers and toes crossed please.

H x

Gloria the Wonder Car

2011-10-19T11:20:00.000+01:00

Gloria the Golden Caravelle is suddenly starting to be appreciated for the amazing piece of technology she is now that the worst of the terrifying anxiety has passed. Being back behind a steering wheel has been more scary than I ever imagined.

At first, before the familiarisation lessons began, I truly could not see how I would ever get the car started, let alone get the hang of the controls. It was all so frighteningly sensitive and the mechanics went through it all so quickly. "This does that, that does this, pull that, push this et viola!"

During the initial phase the car broke down repeatedly and was taken away again and again for adjustment or repair. All the time increasing the anxiety and frustration I felt to ridiculous levels. Just the thought of opening the back of the car had me breaking out in a sweat. Crazy!

The instructor BSM provided had never seen a more complicated set up, and he'd been teaching for over thirty years.

Every time we went out Gloria had to be transformed for the instructor to get us to a safer place to start, then changed back to my set up for me to drive, and at the end all of that in reverse. And that's if it hadn't broken down again by then.

However, the initial phase did not last too long thank goodness and within a month I was driving independently. Not too long after that I drove round the M25 and now it is becoming more of a pleasure to be able to say " I'll drive".

There are still moments of terror though.

Last night I went to visit a friend in hospital and picked up a couple of others on the way. It was brilliant to see one of my regular readers looking so much better (Get Well Soon). Although she won't be home for a while yet I think. Anyway, as we came out to go home I tried to start the engine but couldn't. Gloria was telling me I'd left her in gear but I can't change gear unless the electronic system is started. Stupidly I released the handbrake as one of the safety measures on the car is that I need to apply the brake before changing to drive or reverse. With the engine running the auto-brake cuts in but without . . . Unfortunately I'd parked on a hill too so of course Gloria started rolling. Immediately I reapplied the handbrake but that too is electronic and, although independent of the rest of the car's controls, takes a few seconds to react. Long enough for us all to scream hysterically as only women can do.

Fortunately we came to rest without hitting anything but I definitely skipped more than a few heartbeats. Now we are sitting right out in the middle of the road without power. Great! Then we had the idea to press the foot brake to enable a gear change. Neutral would do. Anything other than the middle of the road would do by this point. Obviously I can't press the pedal and I'm locked in, in Percy, in the drivers side. So my BF (not a tiny midget person) crawls feet first under the steering column from the front passenger side to press the pedal . . . and it worked. Phew!

Now the engine will start and we can go home. It probably all happened in the space of a few minutes but we were out for three hours last night and that's the bit I remember best. Hopefully everyone saw the funny side.

Driving, I think, will always be a little bit nerve-wracking for me, especially motorways, but aren't you supposed to make your heart beat fast at least once a day.

I'll never let a bit of healthy fear stop me enjoying myself.

H x

2011-10-12T20:14:00.000+01:00

Why is it that everything has to happen at once?

Social Services have decided to review my care plan. No big surprise given that all my care providers have disappeared in the last two weeks. That was always part of the big plan eventually but I kinda expected to cut back gradually rather than dump the lot 'cold turkey' style.

Crossroads have had a change of tack (under pressure from all sides) now that they have a better understanding of the situation. Shame they didn't think to do that before getting me all wound up. Surely rewriting someones care needs should be done in full cooperation with the client wherever possible - duh! And preferably before ringing and accusing them of misappropriation of funding, however indirectly.

More and more I'm leaning towards direct payments for an assistant type person who can do it all. Cutting out the rotas and rules of various office managers, who rarely understand the needs of their clients or indeed their staff, appeals to me a great deal.

Yesterday Percy had a thorough overhaul. New tyres, new castors, new motors etc etc. Excellent! A good clean and he is like a skittish stallion again. No longer a cart horse but quick, responsive and much squealing of new tyres. Great . . . except - now he won't lock into the car. Something about the new wheels or motors has raised the height of the ground clearance and the locking bolt is a couple of millimetres too high. I reckon. It's hard to be accurate without getting on the floor to see underneath. It never rains . . . .

Tomorrow, the new hospital style bed I have long been asking for, is due to be delivered. And about time too. The bed I've had for four years cuts across my calves with the knee break raised and the back rest is a good six inches shorter than me. Three Occupational Therapists have agreed that my current bed is unsuitable but it took this latest one to actually do something about it. I knew there must be some excellent staff within Social Services who actually listen and manage to make a difference to people's lives but sometimes they can seem few and far between.

I'm looking forward to a good nights sleep like you wouldn't believe.

Ciao!

H x

Exit Care Agency - Stage Left

2011-10-11T09:52:00.000+01:00

Just when I thought the worst of our troubles were over a whole new batch pops up it's ugly head.

Two weeks ago, on the weekend before we moved house, my regular personal care agency delivered the weeks rota. Nothing unusual about that. Every weekend it arrives and I check to see who is going to be graced with my company that week.

Recently the rotas have been liberally sprinkled with new care workers as happens from time to time. More and more the rotas have had the wrong times on, care workers that I'm not happy with, missed appointments, changes (unnotified) at the last minute. It has become routine to ring every weekend and get the rota changed back to how it should be.

This particular rota had seven new faces on it - and I only get eight calls. The only name I recognised was for my bath call of two and a half hours with a care worker who gets right up in my face. Getting naked in front of strangers has gotten a lot easier but this was taking the biscuit.

So I flipped.

I rang and cancelled. I told them that under no circumstances were they to send any more care workers - ever. I'd had enough.

But it's been OK. Once we moved back my plan was always to phase out as much of the care as possible, preferably all of it. It just happened a bit sooner is all. Social Services got a bit cross and said I was being impulsive and irresponsible but I still have a cleaner and a gardener on a direct payment. And twice a week help from Crossroads. Until yesterday . . .

When they rang and cancelled.

So here I am the morning after deciding on the best path to take. Do I -

1. Accept the inevitable and let her go (she's become a good friend too)? Try to muddle through without any help and see how we get on? It might be OK.

2. Ring Social Services and cry desperately down the phone that I just can't cope without help.

3. Try to use the opportunity to negotiate for a PA who I can manage myself by direct payments and thus never have to deal with office staff (who have been the bane of my life).

4. Speak with Carer Support and let them deal with it.

I'm not sure if my indignation is because of the suddenness of the decision, the impending loss of a friend or a genuine worry that I will not manage. If I let it go there is a real danger that I will not ever get it back should I need to. On the other hand it has been a real luxury having the evenings to ourselves without interuption of care workers coming to put me to bed. Will the freedom of having no one coming in the day time be a similar release or a frustrating and exhausting round of desperate catching up.

Also it will add more pressure to the family as the jobs I cannot do will now fall ever more on them.

What to do, what to do? Time will tell.

H x

Home Sweet, Home

2011-10-08T14:49:00.000+01:00

Finally we are home.

After 4 years and three months of arguing the toss over every inch of space, every cupboard, every doorway, every screw, and every penny promised. We. Are. Home.

It feels good. Despite my many misgivings along the way and multitude of (justified?) criticisms the builders've done a good job. The kitchen (where I'm sitting now) is spacious, light and airy. The rise and fall worktops have been more useful than I'd originally anticipated, and middle son is making low shelving to use the space underneath at the back, the bit that my legs don't make full use of.

The bedroom (MY bedroom) is bigger than I'd pictured in my mind's eye. There is space to turn and the bed and wardrobe fit perfectly. The only small drawback is that I am now getting into bed from the opposite side to that which I am used to but I'll get over it with time I expect.

The bathroom is my favourite space (the kitchen is a very close seecond). For years I have been having to use a commode in our lounge for my daily ritual but now, not only do I get to close the door and pull the chain afterwards, but I'm treated to a wash and blow dry every time I flush. Heaven must be just like that! Add to that, the wet room shower and sink at the other end and total independence is but a whisker away. Almost anyway!

My only real disappointment at the moment is the outer doors front and back that I can't open/close/unlock/lock as the automatic closers were never installed but that is in hand and should be remedied in the next few weeks.

Even the request for a new bed is being processed and looks like being successful.

Time to move on from this subject . . . finally.

Percy is poorly. In the last few weeks I have found spots of black appearing on the floor from nowhere. Well obviously not really from nowhere but that's how it seemed. Then at my annual service I was told a substantial list of parts is needed to keep him healthy (no mention of any leaking though). Tyres, footplates, swivel wheels, armrests, etc etc. It would be cheaper to replace the chair but the NHS is their wisdom do not allow that. Repair at great expense, yes, replacement to save money, no. And when they turned up to do the work (after cancelling late twice) they found the leak and couldn't do the work anyway.

So now, until two new motors are delivered, Percy is housebound.

And that means so am I.

But what a lovely place to be bound in.

H x

Long Overdue

2011-09-26T15:05:00.000+01:00

Hi

It's been around three months since I last posted on this blog. I hope I've been missed.

For whatever reason I could not bring myself to expose my thoughts to the wide world for a while but I'm going to try to write more regularly again. I make no promises.

Update: The Motability car I waited almost four years for is on the road and I'm back driving myself around at long last. The feeling of freedom is exhilarating, the anxiety has been terrifying but is subsiding slowly the more I get out there. The Golden Gloria gives me a little more independence and a dose of much-needed self-belief that has been sadly lacking of late.

Also . ., .

Update 2: The house is finished. All the alterations are done and we move back in on Wednesday (only two more sleeps). We now have a downstairs bedroom, a wet room, good solid concrete ramps and rails front and rear and a huge kitchen. There are elements of the work that have not taken the whole family into consideration but we knew that. The adaptation precedure does not allow for large families or alternative living arrangements. As a result it is not as perfect as it could have been but I'm not going to grumble. It's over. We're finally going home.

And . . .

Update 3: Tomorrow I go in as a day patient for botox. It has been much debated over as to whether I would benefit from it but finally a decision has been made to go ahead. Under general anaesthetic, and alongside a cystoscopy, fourteen injections will go in to my bladder in an attempt to paralyse the muscles in that area and stop the painful spasms. The hope is that by interrupting the spasms they will not return after a few months when the botox wears off. Although more botox is possible, another GA is not my idea of fun. Shame no one will even notice my wrinkle free bladder.

Now I want a holiday again. The cooler weather and changes of autumn have lit my travelling bug. I wish I could go alone . . .

H x

2011-07-20T19:35:00.000+01:00

I'm still here.

My long term depression has finally manifested itself into a serious depressive illness and I've been quite poorly.

Hopefully, for now at least, the worst is over.

I seem able to function on the outside although my head is still not right and I tire easily.

We are trying new meds as from two weeks ago and I am making an effort to leave my shell/my bed/the house more often.

Slowly, slowly so I'm told. Any movement has got to be upwards when you've reached the very bottom.

And after all . . .

. . .I am still here.

H x

2011-07-20T19:22:00.001+01:00

Last night I had a really vivid dream.

Ages ago I'd had a dream that I'd bought a flat in this converted warehouse type place. It was an austere pre-war workhouse type building with naked brick walls and giant steel doors. Some of the details are fuzzy but others are so clear. To get in, you had to go through this big empty space, which was eventually supposed to become the dining hall when the work was complete, then up in a lift, along another corridor etc. This went on and on more lifts more corridors, who would buy such a flat?

All the corridors were lined with storage like the lockers you might see in an airplane galley but glossier (no finger smudges though) and fitted in a way so that unless you knew where the lift was you'd have a hard job finding it. The toilets too were in those corridors and you could also get to the flat by flushing yourself up the pipe. A pipe like the ones for the money in the supermarket, not the toilet silly.

This flat had a small bedroom, a lounge/kitchenette and a really tiny front door a la Alice in Wonderland.

Last night I dreamed I was in a shop and there was a girl with long blonde hair and two matching babies (tweedledum and tweedledee style). She was a stranger and I bought her some packs of nappies but she had to come to find the same flat mentioned above to pick them up. On the way up we bumped into our cat who smiled at her, she immediately started screaming and was terrified.

We flushed ourselves up to the flat but the babies got stuck because they insisted on being side-by-side so they walked up.

Once in the flat (we came in through the bedroom!) our rabbit was sat on the sofa and the girl would not go near she asked that the two dogs be put into the bedroom so that she could relax. I decided to only give her half of the nappies as she was beinng so silly about the animals, anyway you never know when you're going to need a nappy.

There was no other furniture than the sofa in the flat and a box in the bedroom that I hid the remaining nappies in for a rainy day (!). The cat then reappeared from behind the sofa and sat on the girls lap and turned into a rabbit.

This is not the only recurring dream I have about a property other than the one I live in and the details of the property each time are exactly the same. Even though the storyline and characters change.

Wouldn't it be weird if I actually went there one day. I think I'd be well freaked out.

So if anyone fancies themselves as an amateur dream therapist, here's your chance.

Anyone? Any ideas what that's all about?

H x

Eldest Son

2011-06-23T07:04:00.000+01:00

I know, lets write a blog thats about something other than the house or the car.

My eldest son has a really good job as a software engineer that he worked very hard to get with a prominent IT company. He is well paid for his age, reasonably anyway, and he has his own privately rented, furnished one bed flat on the back of that. However, he has become disillusioned with his daily grind, and wants to make a differencein the world. He has an idea that he'd like to join the army, in some kind of Officer type front line position, so that he can help people who are less fortunate than he has been.

I am not sure if this is a good idea (slightly understating here).

Whilst I understand his reasons for wanting to help people I think his perception of what this involves is flawed. So far his experience of army life has been based around shoot-em-up computer games and autobiographical books written by serving soldiers. He has an exciting romanticised view of what army life will be like and although I have voiced my concerns he is not listening.

I have broached the subject and although we didn't argue exactly we have agreed to disagree. On the one hand I want to support him in his decisions so that if it all goes wrong I can be there to pick up the pieces. On the other hand I had not anticipated there being actual pieces to pick up.

Having made my case I feel that I can now only wait for nature to take it's course. Either he will or he won't. There is a fairly good chance that he won't be accepted being as he is quite firmly on the autistic spectrum but it's a risky strategy.

This theme has been bandied around for a couple of years now without wavering. Recently there was a slight shift in his direction. We had a discussion about how it was possible to help people less fortunate by volunteering etc, without actually joining up. That's a new tack. We talked about earthquake zones, tsunami's and Red Cross type projects etc.

Meanwhile, the project he has been working on and was not really what he wanted to do (wrong location for him I think - not enough young people), he has been offered a new project within the company that means relocating. Brilliant! He is really fired up and already hunting for shared accomodation (he recognises that he needs company - that's good) He has a group of young people all ready to share with and they are house-hunting for this September.

Maybe this will be the shift he needs to change tracks and consider other options as a viable proposition. Either that or he will run out of time to apply.

Or he might meet a girl!!

I can only hope.

Tomorrow it will be daughter's turn.

H x

A Non-Post

2011-06-18T15:15:00.000+01:00

In some ways I wish I had kept this blog completely anonymous. Things happen occasionally that are highly irritating, hugely frustrating or just that I want to vent my spleen, but I can't. Life is not like that. Venting without care or caution is a ticking timebomb and inevitably comes back to bite me on the ass.. I have found that upsetting people I care about, however accidentally, hurts.

For example.

This week I have found myself feeling very lonely and isolated. Now I think it is mostly down to the monsoon rain that descended on this area of the planet in the last few days trapping me indoors. And being in this halfway house where everything is out of my reach and the honeymoon is over. Or could it be that my car is on the drive and I still can't drive it.

However, if I dedicate a post to my negative frame of mind, people I care about, and who care about me, read it and feel guilty (possibly) for not noticing my melancholy.

See! Damned if I do and damned if I don't.

Also it doesn't help that I've had this withdrawal headache for six days' due to the extended chocolate and sugar binge I've been on recently. I know it will go soon but it doesn't help my mood at all. And my daughter stressed me out big time with her selfish lack of consideration for the rest of the household despite all of us bending over backwards to accomodate her.

However, if I write about all that, the pity parade will descend on me again. Otherwise known as people who care. And, at the moment, I'd rather it didn't.

I'm too busy feeling sorry for myself.

So I won't write any of that then in case it upsets someone.

H x

Disabled Toilets Rant

2011-06-15T15:02:00.000+01:00

It was suggested to me, after I spouted off vociferously, that I should express my disatisfaction with the disabled toilet situation to a wider audience. I suspect it was in an effort to shut me up but nevertheless it seemed like a good idea.

I wonder who designs disabled toilets? I mean public disabled toilets (pdt). Do they ask around at all? Do they check with a range of people who experience disability on a daily basis, or is it a bunch of blokes down the pub having a guess?

I suspect in many cases it may be the latter.

For example.

There is a pdt I know of that is less than two metres wide. If you factor into that the sink, toilet, handbasin and space for the door to open inwards, I doubt that many able people could manage without standing on the loo. Crazy. So yes, for me space is a priority issue. Space to turn without hitting porcelain and with the door opened is a bonus. I reckon 4m x 4m is a good size probably, but I'm guessing here.

Then there needs to be space beside the loo, space enough for a wheelchair to get real close. Now it gets difficult because unless you allow space both sides someone is gonna be disappointed. Not everyone loads from the left but you wouldn't think so. In my experience the left is what you get if there's any space at all.

Also I have an issue with rails. Every disabled toilet worth it's salt will have rails next to the pan. Usually big ones that lift up and down fairly easily. These rails are the bane of my life (as far as toilets go anyway). Getting a chair close in means lifting the rail, it then sticks out from the wall a bit, usually enough to still prevent a wheelchair from getting in close. Nine times out of ten it will then smash down as I back the chair in, narrowly missing cracking my head open (so far).

So presuming there is room to turn and space by the loo then you need paper and a flush, and although all these toilets load from the left the paper and flush handle are always on the left too. What's that about? My left side is bad news. My left arm don't work. Reaching to the left just ain't gonna happen. Even if remember to check I can reach the paper first, I'm not going to flush sitting on it, no way. My bum is clean by then thanks. Once I'm comfy back in my chair there's that flush handle over on the other side laughing away at me. "No way you reaching me now" and he's right!

Now I need to wash my hands. Provided there's room to manouvre and it isn't one of those tiny corner basins taps I can turn, soap I can press. Washing hands is kinda tricky but no way round that. But what's with press button taps? In a disabled toilet? Hel-lo!! Even with two hands these things are tricky, if not completely useless. In a world where auto taps are available and auto soap exists on the supermarket shelves it doesn't take a genius. Ooh I'm so sarcastic!

Now I've dried my hands I'd like to check I'm presentable - but no. The guy who fitted out the pdt was obviously standing up. Is that a preconceived assumption? I don't think so. The mirror is always fitted at standing height. I've never yet found one that is the right height for a wheelchair user and a standee. Even in the adapted bathroom I pay to use each week.

Some of you will be wondering by now if I avoid using public loos and you'd be right. I will go out of my way not to be disappointed. Opening the door of a strange pdt is just too disheartening. The fact that I do it at all means it's imperative and finding unuseable facilities creates great stress and could be catastrophic.

One day, I dream of finding the perfect bathroom. Maybe it'll be today!!!!

H x

A Successful Shop

2011-06-12T22:55:00.001+01:00

What an awful day. Actually this whole week has been a bit hit and miss with the heavy showers. Just as Summer arrives the spring weather decides to show up three months late. Typical. One thing we can never call the weather in this country is 'boring'. No matter what the forecast is you never know til you stick your head out from under the parapets what will be thrown at you.

No matter.

Today I have been shopping with my grown up daughter. She has addressed her debts at last and called in the big guns (mum and dad) to bail her out. It wasn't a large debt but I suspected we would be asked to help at some point and I'm glad she felt she could ask. She had an amount in mind and explained her repayment plan so that we would know she was intending to pay it all back when the millions start rolling in. Bless! Truly a prodigal daughter.

We are such a stubborn breed her and I. She has struggled with her finances all year and I'd thought she would go under months ago so all credit to her for managing on a pittance for so long. Asking for help tears at my soul and has a physical price to pay. I'm so proud of her.

Anyway having called off the banking dogs, we thought (she thought) we should celebrate by replenishing the contents of her wardrobe. With a trip to Primarni.

Actually this trip has been on the cards for some time. Ever since she had solid confirmation of her au pair job in Madrid in fact. So all of three weeks then.

This morning we headed off for our second such foray into town and we surpassed ourselves. Despite the rain we managed to spend money in every shop and didn't come home til our list was virtually complete. Only one item managed to evade us, unfortunately it is quite possibly the most important one. A bikini. How on earth will she manage in Spain, in 30º+ for eight weeks without one, especially when the family has their own pool?

Maybe she can get one out there? But for now this little piggy bank is closed for the summer however . . .

. . . we did have a great time shopping.

Love it!

Man, I'm gonna miss her.

H x

Unnaccustomed Hesitation

2011-06-09T14:59:00.002+01:00

Yesterday I added my BF to Gloria's insurance for one month. It was a kind of compromise, an internal battle with myself. On the one hand I can see that this is a sensible idea. It enabled us to take Percy with us yesterday when we went out together and, until I am comfortable with driving myself, it's the only way I can do that. I mean, by letting other people drive to places that don't have decent public transport.

So why did it feel so wrong? So . . . something?

On the other hand, and I mean no disrespect to my lovely BF, she could see me struggle with the decision, but . . . Gloria is my car. I want to be driving her (imagine childish pout about here).

As it turned out the insurance company would only allow a person to be added for one month or full term which is five years. It was extortionate either way.

Taking Percy with us, however, was excellent. So much better to be side-by-side while we chatted. So much easier to not have to transfer in and out of the car. Better for her to not have to lift Slim into the boot, better for me to be independently mobile and posturally more comfortable (ignoring the current sore bum situation). But still . . .

I can only liken it to being a left-hander and working with right-handed tools. Alien. Against all your instincts. Which is kinda crazy because it benefits us both but . . . still . . . Silly woman.

The house is coming along nicely only two weeks in. Inside the kitchen is gone, the dining room chimney breast is almost gone, the light switches are all off the walls and every surface is covered in a heavy layer of dust. Outside, the outhouse is gone and the concrete floor, which turned out to be over a foot thick, is well on the way. The foundations are in and the brickwork is completed up to the damp course ready for the floor to be poured over the drains and waste pipe that all had to be relaid.

The mains water, which was punctured on the first day severely disrupting neighbourly relations for a few days, is all back on and working properly at last. Today I am told the floor is being poured but seeing as it's raining on and off I'll leave them to get on with it. Maybe tomorrow I'll go take some pics.

Next week our daughter is off to live in Madrid for a short while and is uncharacteristically nervous about it. Not much phases her normally so this is a new phenomenon. It is nice to be needed and strange for her to ask for help. I like it!

Maybe we are entering a new era.

I can hope can't I?

H x

Independence Pending

2011-06-06T18:39:00.000+01:00

Almost a whole week has passed since I last blogged about the new car arriving. Or rather I stressed BIG TIME about it's arrival. Last week was also half term so there was not much chance of a peaceful moment to think let alone write.

They kept me waiting on tenterhooks all day in the end and didn't deliver until nearly 6pm but oh my, she is pretty.

Gloria is a Motability funded , hydraulically ramped, Wheelchair Accessible Vehicle (WAV), with a computerised Drive-by-Wire system that enables me to drive with one hand from Percy. She is a metallic beige (pale gold) Volkswagon Caravelle Nevada with tinted rear windows and automatic everything including climate controls and she has the potential to change my life. In theory.

In actual fact it's not as simple as that.

For a start, although she is set up for me to drive, until I get lessons I don't know how. OH is having a fine time driving around with her but that kind of misses the point. We've taken Percy out with OH driving, and that is great that we can now do that, but I want my independence and it seems to me that the closer it gets to that potential, the further it seems away. Maybe I just won't believe it til it happens. Maybe that is just as well.

Several times I have gone out and sat in the car on the drive practising getting in and out, using the lockdown for Percy is a skill in itself. Then I have to make sure the SpaceDrive system is switched on, wait for it to boot up, follow the instructions on the little screen, check the handbrake is on and start the engine. After that I turn on the auto-brake, which takes over once the handbrake is released until a gear is selected, and the accelerator when pressed should release the auto-brake.

However, I can't select a gear from Park without pressing the brake first and turning the steering. The accelerator doesn't work in Park and I'm unwilling to select Drive or even Neutral unless someone has their foot on the dual brake pedal. Coward? Well maybe! But I like to call it cautious. This car's been a long time coming and I don't want to be the one to smash it just yet. So there's only so much practice I can do until the lessons start.

Now it's here I'm impatient to get started. The closer I get the more I want it. Bring it on!

H x

D Day

2011-05-31T12:19:00.000+01:00

Today is Tuesday 31st May.. Delivery Day.

I've been awake since before sunrise. Worrying. Endless What ifs.

Like.

What if the car's not finished and they're still working on it?

What if the first time I go out in it I crash into something?

Or something crashes into me?

What if the automatic wipers don't automatically cut in and I'm on the motorway so I can't stop easily?

What if I sneeze while I'm driving?

What if someone gets road rage at me cos I can't wave a thank you?

What if my chair won't lock in?

What if I break down and nobody knows?

What if my mobile rings?

What if a tree falls on my car?

What if, despite the driving lessons, I never get good enough to go out on my own?

What if my benefits are cut and I can't afford the fuel?

What if I run someone over?

What if I cause a massive pile up and people die because I wanted independence?

What if I lack the confidence to drive alone?

What if I realise I have nowhere to go?

What if . . . ?

What if . . .?

It's past lunchtime and they're not here yet.

What if they broke down on the way?

What if the traffic's so bad it takes forever to get here and they give up?

Maybe I'll sleep better tonight with all this worrying.

What if I run out of things to worry about?

It'll all come right in the wash.

But what if it doesn't?

So what! Get over yourself!

H x

Test Drive Nausea

2011-05-29T22:15:00.000+01:00

I did it!!

Last week I travelled on the train with my daughter, through London and up to Hemel Hempstead, where the car conversion is currently taking place, for my test drive. When I say currently I don't mean right this second cos it's the weekend and the work is almost over now but that's where it has been, in it's second phase, for the last six months.

The journey was OK on the whole (easy to say with hindsight). The guard on the train didn't know we were coming (but they never do - what is the point of booking assistance?), the taxi driver couldn't find the key for the ramp (yawn - he borrowed one from another cab), the garage had forgotten we needed picking up from the station (there was a large WAV at the taxi rank - what luck!) and we arrived a little early for their liking. I got the impression they wouldn't have been ready no matter what time we turned up though. So cynical!

Luckily, waiting is a particular skill of mine. I wait all the time, every day, for drivers, for carers, for appointments, for inspiration, for postmen, in queues. I've got rather good at it which was lucky because we waited quite a while. Eventually we were called and it was time to try out the controls in my new motability car for the first time. My heart was in my mouth.

The first thing I did as I rode Percy up the ramp and into position for the first time was take a chunk out of the plastic trim around the door. Bugger! Typical! A few little adjustments and notes about positioning were taken and then we started the engine. Oh my God! They are really going to let me drive this car. Gently on the accellerator, nothing! A little more, nothing. A lot more and . . . still nothing. The mechanic in the passenger seat has his foot on the brake. Suddenly he releases it and we wheelspin across the garage forecourt. Oh my goodness! That made a few heads turn.

Cautiously we drove out and circuited the car park twice, spasming and jerking and spluttering. Forwards and backwards, forgetting all the rules of the road and making a right hash of steering and braking. Speed I can do but slowing down? Forget it! Mirrors? As for signals! Pfft! What are they? That was enough for me. I needed a lie down and the poor mechanic never took his foot off the pedal. What a job!

Anyway, he said I did really well for a first go (I can't help thinking they say that to everyone as an attempt at confidence boosting) and they just have a couple of little bits to do and she's finished. Delivery is set for Tuesday this week, which is two days from now, then lessons will begin in earnest.

God help all the drivers in my local vicinity.

So if anyone sees a pale gold Volkswagon Caravelle weaving erratically down the road and being driven with one hand by a woman with wild eyes that'll be me. Give us a wave.

But if I wave back . . . . .run for your lives!

H x

Messing About In Boats

2011-05-25T20:08:00.000+01:00

Another blogger over at writer in a wheelchair tells often of her exploits at Sailability and inspired me to make some enquiries along the lines of the 'is that something I could do?' variety.

Turns out, after a few phone calls, there is a club nearby-ish which I thought sounded like it was all geared up for my particular needs. They meet every two or three weeks under the PHAB umbrella. So last Saturday we went along with friends, children and helpers to see if it was any good.

Of course it helps that the sun was shining and there was a gusty breeze to help things along but what a fabulous day! Outside, in the open air, is my natural place to be, but recently inside at home is where I've been found most. Outside and on the water with the sun on my face and the wind in my hair, racing along the tops of the waves is like manna sent from heaven. Everyone who came, and wanted to, had at least one session on the water nipping in and out of the racing dinghies. Whether in the safety boat or the small two man sailing boats, the thrill of skimming across water had us all glowing with health (or sunburn - take your pick).

Other members had lots of tips and said there are other clubs nearby too. Once I've tried a few I'll know which one to pick but either way . . .

. . . I will definitely be doing that again!

H x

The Car or Ooh-eritis

2011-05-24T17:36:00.000+01:00

I'm just back from my daily stalking session along the road at our house. Things are cracking on apace. Already, and they only started yesterday, the kitchen is gutted, the brick outhouse is down in a heap and there's a big ol' hole where the patio used to be. Lets hope the good weather continues so they can get on and we can go home.

Meanwhile, we are quite enjoying camping out at our temporary digs. There's a freedom in knowing we won't be here long, like an extended holiday atmosphere. There's no need to tut at the state of the decorating (to be fair it's all been freshly painted but you get the gist), it doesn't matter that the gardens full of brambles (only round the edges), or that I've marked the paintwork in several places. We are in transient limbo and loving it. For now!

Meanwhile, the car adaptation has continued and we have now reached the point where I am needed to test drive the car. Ooh-er!! It's not about my driving really but more a practical check that all the measurements taken all those months ago work in practice. That I can reach all the things I need to reach and that I know what button does what. I'm brickin' it!

And it's not just about driving a car, any car,which is enough to make me wobble, but all the things combined that will make it a very stressful day. I feel sick in the pit of my stomach. We have to run to a timetable, which is difficult for me even in normal circumstances, in order to catch the train that's prebooked with ramps. Then we have to travel across London by taxi, which is not only uncomfortable, as the London cabs are not tall enough inside to lift my head up, but also I get travel sick. Even more so when I can't see out of the windows and I'm travelling sideways. Then a second train pre-booked with ramps and then, of course, the car.

And afterwards we have to do it all again to get home.

None of these things is enough to stop me going and even if I were travelling alone I would still do it but nevertheless it will be stressful. And tiring.

And tomorrow is the day.

Like I said. Ooh-er!!

H x

Cats

2011-05-22T23:10:00.000+01:00

So here we are in our temporary accommodation while the work is done at home, and things are slowly sorting themselves out.

On the plus side I have commandered the dining room for my bedroom so I am no longer sleeping (or pooing) in our living room.

However this means that we have no space for a table and chairs indoors, so we'll be dining al fresco as much as possible. Tonight, the chilly gale force winds blowing through the garden meant that our hot roast dinner was cold before the plates hit the table. We'll have to learn to eat faster!

Most of the boxes have been cleared away now and space to move has appeared. The gazebo has gone up in the garden today thanks to middle son and his friend (female, pretty, possibilities there) and we have hot water which we didn't have at first as the timer was broken.

It feels like we're on holiday. Except we took the pets, but the cats are not happy.

One cat is doing alright, using the litter tray and really isn't too bothered to be stuck indoors but the other has been miaowing constantly to be let out. So far she pooed on middle son's duvet and Mabel (super dog)'s cushion. It's getting on my nerves!

Today the cat got out. How it happened I have no idea. All the doors are shut, all the windows are shut but still we had a call to say she was at our old neighbours house. I'm not surprised at all. We knew that might happen. The thing is our neighbour feeds my cat. They really shouldn't and it is so irritating but they tell us all the time our cat is in their house and they had a bit of salmon left over . . .

It started with a bit of fish and now she has a bed, a bowl, special gourmet pouches. I won't compete. I'm fairly sure that when she turned up today they fed her before ringing us. It's so annoying!

They offered to have her while the work was done but I wasn't going to give her up that easily. Middle son trotted off down the road with the cat basket and fetched her back. Ten minutes later she disappeared again. I have no idea how she is getting out but I give up. It's over. I fully expect by the time we return to our home she will be their cat. I can't say I'm not bothered because I am. But not because I'll miss her, I'm just sore at being beaten.

It feels so wrong but then so right. Cats don't really belong to people anyway, they just deign to live alongside and she so obviously chose them.

I'm not taking it personally. Much!

H x

Moving Out - The Work Begins

2011-05-18T10:54:00.000+01:00

Today is the day the removals team come. The first day. Tomorrow they come back early (ish) and we actually move out, then on Monday our home becomes a building site officially.

I feel sick!

We're as ready as we'll ever be I guess. The point of no return. There's no going back now. Will I live to regret my request for more accessible living? I'm still 50/50 on that, the jury's still out.

Do I want this huge upheaval? No way. Do I want our home ripped apart? Of course not. Do I believe that life after adaptation will be easier for all of us? In some ways I guess I do. I have to really or I would no way be entering into this period of completely disruptive chaos.

It will for sure be easier for everyone for me to have a flushing toilet that's not in the main living room and loads more convenient to be able to shower at home more than once a week. It will be nice to have a space to be private and to dress and undress without an audience (or with, if I choose), however disinterested they are. Although I will miss the company in the evenings while I drop off to sleep. The kitchen is best not mentioned, I can't even think about it, time will tell.

We picked up the keys over the weekend and the new house looks good. All the walls are freshly painted and new flooring has been laid. Plumbing has been done for the washing machine but not the dishwasher, that might be a problem. It looks bigger than it did now the walls are a lighter colour but I've already chipped a door so that won't last long!

They aren't coming until 2pm today so for the moment the house is quiet. A terrible mess of bags and boxes and completely non accessible by wheelchair but peaceful. My laptop is balanced on the ironing board and this is as far as I'll go today I expect. I have everything I need right here with me. Oh apart from food and water, small detail, but at least I have my laptop, that's better than yesterday.

Don't expect to hear from me for a few days now. The internet connection at the new place will need setting up among all the other unpacking etc.

Oh and there's good car news too.

H x

The Final Countdown

2011-05-14T16:09:00.000+01:00

Five days to go.

And finally the rest of the family are getting moving. Today OH has started sorting his copious wordly possesions and myriad of unrelated collections into boxes of what is moving with us and what is not. The temporary accommodation is a little smaller but fortunately we do not need to take everything with us. Only what we might need for four months! Which is most, but definitely not all, of it.

He is also just starting to say things like "Have you done (fill in your own adjective here)" or "Have you told (fill in domestic services etc)". Like I would leave it all to the last minute. I don't mind. It's kinda cute that he is so ditzy and disorganised. Frustrating sometimes, but cute. A good balance for my uber organised control freakiness.

In the meantime, the boys and I, have not only done all of our sorting but also a lot of the rest of the house. This morning we have cleared the garden shed and cut the grass, sorted out the huge pile of connection leads and chargers amassed from years of electronic gadgets and led the cheerleading for OH to keep him motivated.

On the still-to-do list is;

the cupboard under the stairs
the large kitchen cupboard containing small electric appliances
the small shoe cupboard
under my bed
and daughters uni stuff (she comes home for the summer tomorrow)

Tomorrow OH will be out all day driving down to collect daughter and said belongings. It's a five hour drive each way, or thereabouts depending on the traffic, plus loading time and a break for lunch. So tomorrow is a day of rest (I have to factor them in somewhere) for the rest of us. Then Monday is bath day and the house cleaner comes so that is pretty much all of that day out of the equation.

That leaves Tuesday morning for finishing up (out pm) and Wednesday is the day the removals men bring the lorry and make a start on packing up. I reckon once that happens I am immobolised. Too many people and too many boxes around to even be in the house if truth be told but I refuse to be stuck out in the garden all day. What if it rains? Plus I'm a control freak and I need to be involved so the poor packers are bound to get it in the ear at some point.

What wouldn't I give for packers on the autistic spectrum?

Maybe you'd have to live at our house to really get that?

H x

Eight Days And Counting

2011-05-11T15:06:00.000+01:00

OMG!!

Talk about it all happening at once, my head's in a whirl.

OH and I had our courtesy night away with Premier Inn last weekend, and it all went rather well. The bathroom was fully accessible by wheelchair and the large shower seat was more useful than most. The room was spacious, the kingsize bed was a little too low and, for us, a little too hard but I didn't ask so have no idea if a remedy was available (OH doesn't like a fuss). All meals were included in the Beefeater next door, the staff were friendly and the food was good. My only real criticism was that wheelchair access to the outdoor dining area was limited as all the tables were up or down steps (oh yeah, that, and the little buggers charging across the ceiling all night). A litle niggle that OH said was not worth the effort of bringing it to their attention. Hmmmm!

Would I go there again? No, probably not, they lost my trust with their initial attitude to their flawed policy. But I would try Premier Inn at a different location. Once the problem was bought to their attention they acted quickly. The test will be if the additional training implemented works, and the same thing doesn't happen again next time. We shall see.

So after a poor night's sleep (never do well away from home - too uncomfortable) the very next day was another party night.

Man, was I glad to see my bed that night! All the next day I was wiped out and it took me a whole day to do about an hours ironing. There were just no spoons left in the pot.

Now, after a day off, the pace is picking up again. The Big Move (part one of two) is creeping nearer. I have to sort through every cupboard in the house and decide what needs to come with us, what is to be charity shopped and what can stay, boxed up, upstairs. Books, clothes, files, ornaments, appliances, nothing is to be spared from this ruthless cull. The frustration of sitting in the house unable to independently do this is enormous. Unless I have help to access all our crap I cannot possibly get it done in time. Every carer, friend, family member that enters the house gets a shelf, a cupboard or a box to clear under my watchful eye and slowly, slowly progress is being made. Treasures have been unearthed that disappeared from my line of sight four years ago to the bottomless pit that is 'upstairs'. Things I thought I'd never see again, things I was told are 'definitely not in my bedroom' are reappearing on a daily basis.

Then the Mobility Concepts (car) people turned up to take Percy to the workshop for three days (maybe more). What timing!! It couldn't have happened on a worse week. No actually I take that back, next week would have been worse.

For now, not only can I not reach the cupboards, but even better I can't move around barely at all. Two hours in Slim and I'm knackered from pulling myself around. My chest is compressed, my posture's collapsed and my breathing is laboured and it's back to bed for me. Nothing is getting packed and there's eight days left before D Day.

I'm not panicking yet but arrrrrggggggggghhhhhhhhhhhhhhhhhh!

H x

Birthdays And Birth Days

2011-05-05T19:22:00.000+01:00

Yesterday was our middle son's birthday and we could finally reveal his big secret. We have two tickets for Glee Live. Never mind his birthday, I'm so-o excited (presuming it's me he's taking). His very physical excitement is infectious so that, although I was already looking forward to it, the air is positively charged with anticipation.

I started that on Weds and now it's Thurs so now the new yesterday was youngest son's birthday and he went to school with a right grumpy head on. Having spent the last three weeks trying to manipulate us into letting him have the day off (never gonna happen) with tales of birthday beatings and his saddest puppy face, he's now going to sulk on his birthday. Whatever!! Been there!! Can't believe my baby boy is fifteen though.

What bad planning , having two son's birthdays right on top of each other like that!

Middle son was born in 1992 and he was my last baby (so I thought). Three and a half years later and putting on weight rapidly I went to see my GP with a nausea that wouldn't go away. Could I be pregnant he asked? I thought it highly unlikely. My periods were still as irregular as usual, my coil was in place (or so I'd thought) and surely after three babies I'd have noticed? Apparently not!!

The due date was approximated by scan and I was found to be five months pregnant. Oops! How did that happen? Anyway the baby was due mid-May so, heavily pregnant, I went ahead with our plans for middle son's fourth birthday party. In my inestimable wisdom I invited twenty of his nursery school friends to our house and booked a bouncy castle. Easy peasy. All I had to do was pull up a garden lounger and cut the cake, I wouldn't need any help. You know what they say about best laid plans . . .

It was a Saturday and the day after his actual birthday. The bouncy castle came nice and early, the weather was fine, the cake turned up and all was well with the world. If I'm honest I knew a couple of hours before all the children arrived that I was contracting regularly but took no notice. Labour takes forever, a couple of hours delay was all I needed and this would take my mind off the pains. About halfway through while filling lemonade cups things got seriously urgent.

Now I was in trouble. Doubled over every few minutes and desperately trying to get hold of someone, anyone, to take over. Alone, with a house of small children and a cake to cut I rang everyone I could think of. What kind of sadistic karma makes everyone suddenly become unavailable in a crisis? Images of small children taking home tales of graphic childbirth to their parents flashed through my mind. Then . . . a brainwave. From antenatal classes five years before a number flashed into my head and I dialled. "Oh hello!"
"How nice to hear from you"
"Yes it must be five years"
"Yes, can't stand small children thank goodness for school"
"No I didn't know you were pregnant again"
"A party?"
"In labour?"
"NOW?"

My saviour turned up in five minutes along with OH and, despite her dislike of all things small and noisy, took over while we dashed off to hospital. Just in the nick of time too! Unfortunately that was the end of that friendship but I have thanked her profusely. She distanced herself from this madhouse tout suite.

Hence this first week in May is always a bit of a busy time and this year is extra stressful with news of builders and car as well.

That will be for next time though.

Bedtime.

H x

Sun Day Lunch

2011-05-01T16:18:00.001+01:00

Had a lovely day today.

A few weeks ago (couple of months maybe) a garden centre not too far away reopened, after being closed for some time for a total revamp. To the extent that (I believe) the whole place was demolished and rebuilt from the ground up. Probably before it fell down of it's own accord.

They'd always had a rather nice little cafe there and a series of little intimate craft shops with very helpful and knowledgable staff. For a wheelchair user, intimate means non-navigable, and little means tightly packed to the rafters at key times of the day. They really weren't able to maximise their financial potential in the existing buildings, but it was quirky and that was part of the draw.

Today, with boys 3 & 4, I caught a bus I hadn't been on before, that took us all the way, but only on a Sunday. It's the same bus (with an extended Sunday route) middle son catches every day to college, so he thought he knew where to get off and we trusted ourselves to his hands. True to his word we were there inside half an hour and it's enormous.

The 'little' cafe is now four times the size and seats around two hundred (at a guess) inside and out. There's a playground, a sandpit and acres of space between the aisles indoors. All the craft shops have now been swallowed into the one building alongside garden furniture, bbq's and all the usual paraphenalia associated with garden centres (tat).

We had a very nice lunch from the salad bar out on the terrace in the sunshine, but tucked out of that cold wind, and meandered around the shop for a while before going back for cookies and catching the bus home.

It was so much nicer than another Sunday stuck indoors.

If I was asked to critique the new build I would say that their access at the roadside could be better. Although there is a new dropped kerb on the side of the garden centre now, it leads to nowhere. Forcing me to travel some distance along quite a fast road to the next kerb drop along on the opposite side of the road. Also, although the aisles in the shop are nice and wide on the whole there is no easy way through the cafe for a wheelchair once I'm in, other than back through the checkouts or outside. Fine in the nice weather but a real issue to make everyone move if not. And I really missed the intimacy and consummate knowledge of those craft shop owners even with their tight spaces.

But since I had such a nice day in the sun with my boys I'm not complaining.

Not really!

H x

Moving On And Moving Out

2011-04-30T16:54:00.000+01:00

The hotel chain in yesterdays blog are trying to redeem themselves. After tweeting their name in a negative string on Twitter, quickly picked up on by their PR, they are keen to be seen reacting in a strongly proactive manner. As well as introducing a new 'wheelchair bookings training module' for their staff, which is the result I was hoping for, they have reinstated our weekend away 'free of charge'. I'll let you know how it goes, the proof of the pudding . . . . . .and all that.

Now for the good news . . .

. . . we have a moving date!

In the middle of May 2011, roughly three weeks from now, and three and a half years after the original adaptations inquiry, we are moving into temporary accommodation at the other end of our road. Next week the refurbishments are completed (at the new place) and (hopefully) the ramp goes on. We have the date in writing and this week boxes, tape and tissue paper were delivered to start the packing up.

Half of me is thinking ahead and looking forward to the finished house. Access to a kitchen, bedroom, bathroom, flushing toilet et al. The other half is dreading the next four months of inaccessibility, discomfort and making do. And the other half (???) is terribly worried about what the builders will do to our home. The quality of the finished product, and whether all I'm promised will eventually materialise. Before the work starts, but after we've moved, I'm told I will meet with the builders and we'll discuss the forthcoming building work. To what extent I can influence the end result is yet to be seen but I'm damn sure not gonna lay down and let them try to steamroller over me.

There are still a whole load of unanswered questions as far as I'm concerned and I reckon I'm being avoided. Having got this far in, I doubt there are loose ends in the building spec, only in what I am told! I can be a little over-enthusiastic in my opinions but keeping communications open is part of their job and not informing me of the decisions made is negligent on their part whatever they think of me personally. It'll all have to come to light eventually and if needs be, the s**t will hit the fan.

Here I go getting all high-handed again.

Moving though! Good news huh?

H x

Discrimination Extraordinaire

2011-04-28T11:25:00.000+01:00

We have exciting news about the house move but it has been overshadowed yet again by bloody wheelchair discrimination. Some people totally take the biscuit!

My OH and I, for reasons of disability and in the interests of both getting a good night's sleep, sleep in separate beds. This has not always been the way it was and we both miss the closeness of sleeping together, not to mention a bit of the other every now and then. The present arrangement at home - creaky bed in lounge, teenage children, no privacy - prevents this, for the most part, from being possible. So, every now and then we book a nearby hotel room for dinner and a snuggle. It doesn't happen often, and is always a different place, as we haven't yet found a hotel that we are at home in and that meets my needs sufficiently. Hopefully in time we will, so we keep on trying to find places within our budget.

We are due a snuggle.

So recently I've been ringing a few places to see what facilities they offer and whether they can accommodate us (meaning me, mostly).

We're not asking for the moon. The essentials are not extensive but by definition they are essential. In brief we need the place to have:

Burgers on the menu (OH is a faddy eater)
Wheelchair accessibility
A room available

It's not a long list and you'd think we could easily find somewhere, but having an accessible room is not the same as having wheelchair access. Only by ringing to check each hotel individually do you discover that access means different things to different people. If their bathroom has a handrail then it is adapted. And if my wheelchair can enter the room that is wheelchair accessible. Never mind that I can't move once I'm in there, or that the bathroom door is so narrow I can't enter it.

As well as my essentials list, there are other little things we would also like:

A shower chair if poss (plastic garden chair will do)
Full access to all the amenities (not likely though)
A hoist (HA!)
Disability awareness training (some people have this by default - some people just think they have)

So, with all of this in mind, and our limited budget, I rang a well known hotel chain nearby. They are running a good promotion at the moment for £29 a night. Needless to say Friday nights aren't covered by this promo. They never are. Nevertheless they offered a good deal, including dinner and breakfast, so I booked and asked at the same time about the details of the wheelchair access. The lady receptionist informed me that they have three rooms that have wheelchair access, but because of the bathroom arrangements only one was suitable for me. However, they cannot guarantee that will be the one I am allocated. What! I thought she was joking. But no! If a booking comes in for a longer stay, I was informed, they would then get the more accessible room and we would get one I couldn't use. I explained why, they don't care, this is their system and that's that.

Flabbergasted is an understatement! Can this be true? The booking is cancelled but I can't let it go. How many of their able-bodied customers get told they may or may not get a bathroom? How many would be willing to pay the same price regardless of the facilities? Who would not complain if the bathroom in their suite happened to be locked permanently to them but no one else?

Unbelievable!

So the usual letter of shocked indignation (disability discrimination - call it what you like) has gone off to head office in the hope that someone will give a damn.

Most of the time the little things get brushed off my tough hide. The individual looks of pity, the personal comments, the inherent discrimination, the door in your face etc. But every now and then a fire is lit by these little sparks and an inferno ensues. Woe betide anyway in it's path 'cos I'm gunning for ya!

House news to follow.

H x

Family Fortunes

2011-04-26T13:05:00.000+01:00

The Easter holidays, for us, are over and this morning the cacophony of bickering abated as they went their separate ways. Back to their schools, colleges and universities in the last term before the lo-ong Summer break.

It's been a blast!

Nearly every day we managed to get out and go somewhere. The weather helped of course. Long sunny warm days that tricked us into thinking that summer had arrived and even a thunder storm crashing and flashing in case we weren't convinced.

Today the sky is cloudy and the air is cool again. Back to being April as it's meant to be. We desperately need a few good downpours or this summer will be drought city once again.

Youngest son had brilliant results from school just before the break. He is surpassing expectations is a few areas and decidedly underachieving in others. There's room for improvement (isn't there always?) but on balance is doing well enough. He went back eagerly this morning to a last minute run up before the stress of exams bring them all crashing back to earth. As the song goes "There may be trouble ahead . . . ". Hopefully this summer will be the one where he starts going out with his mates a bit more. It worries me that all he ever wants to do is sit indoors.

Middle son was not so keen to be going back to college however. He has had some issues with bullying that I have had to step in and address behind the scenes. The college he is at has let him down in just about every way possible over the last three years and both of us will be glad when he has left. At least then he can get on with making his own way in the world without others deciding for him who he mixes with and what he is capable of. In the meantime we are encouraging him to see the term out as it is around six weeks or so and that is it. It'll look better for his CV to show he is tenacious and committed to finishing what he started.

Prodigal daughter also went back to her university digs today and not a moment too soon. She has a way of spreading herself and her belongings across the house until every room is hers. She refuses to acknowledge the simplest request (although she will do as I've asked - probably) and cannot see why there have to be house rules for her. She shares a room with her brother and is untidy, disrespectful of others possessions and difficult to communicate with. She is also beautiful, helpful (when it suits her), intelligent, funny, good company and my only daughter, so I forgive her. Lovely as it is when she arrives home, and we do miss her like crazy, departure time is a sweet relief too.

Eldest son continues to amaze and frustrate me. He has a very good job in software engineering, his own flat (albeit rented), a good income, and a sporadic social life that is improving. He exercises regularly, although in ferocious bursts of excessive mania then nothing for ages. His diet is somewhat unusual and again sporadic bursts of strange food fads break through but who cares as long as he is happy. Meanwhile he has decided to join the army!! If I was asked what could be the worst job, given his autistic obssessions with personal hygiene and food preparation, I think this would be it. Hopefully they won't let him in.

And now it's time to go out.

H x

A Lull In The Storm

2011-04-22T13:32:00.000+01:00

Quick while the house is quiet.

Where to start?

The trouble with leaving blogging for so long is that I have so much going on and no idea where to begin so - update time.

The house.

Where was I? here

We had viewed the prospective house that is to be our home for the Summer and accepted the offer (despite some misgivings). OK?

So last week the removals company rang and said they have been notified that the move is imminent and came to chat and see the scale of the thing. He was a nice enough guy and didn't appear phased by all our clutter or my hundred questions. They have been given a time scale of two weeks to go. It was not nice to hear that second hand. You would think that we would be discussing a possible date between ourselves before telling removals companies etc. Of course I am now insisting that we have a clear three weeks for arranging telephone, internet etc. Bit bloody cheeky of them I thought.

Typical of the attitude we have faced all along though. My needs, our needs, are secondary to the needs of the housing agency (or tertiary if you count the OT who still has not discussed my needs). That this is our home they are discussing is irrelevent to them. Inconsequential.

You may not believe it reading this blog but I am quite positive about the move and all that it signifies. Writing it down brings out the worst in me. I am quite able to see the reasoning behind the decisions they have made (well my version of what I believe is their reasoning given the lack of communication) but given that the decisions are about our home, I cannot for the life of me understand why we are constantly left out of the loop. Time after time we accidentally stumble across a meeting held or decision made that is flawed or just downright wrong. Goodness knows how many there are that we do not know about! The mind boggles.

The car.

The car is a bit of a sore subject. About once every couple of weeks I try to reach the company that is dealing with the conversion at present and generally get the runaround. They are closed for the day (at 3.30pm?). They will ring me back (sometime/never). The lady/man I need to speak to is on another call/in a meeting/out for lunch/on the roof etc etc.

I have occasionally managed to get through. The car has been, at different times -

on target for delivery (but it was due in March!),
waiting for inspection by Motability (but they couldn't tell me why!)
waiting for parts (no one knew where from - Japan maybe!)
out on a test run (why does that mean they can't tell me anything?)
waiting for me to submit my power chair (it needs a part to connect it to the car) but no one was available to commit to a date for collection.

In January they seemed so sure of their dates. I am very disappointed. Next week I will try again and also I will ring Motability to try to add pressure. I just want to believe I'm being told the truth and not a pack of lies.

The last update I had was that the chair was being picked up imminently (yet again no date they would commit to though) and the car would be ready around the end of May. I'm afraid I just don't believe a word they say any more. I will keep on ringing them though if only to remind them I exist and won't lie down and roll over.

When next the house is quiet I'll bring the family news up to date ok?

Caio for now!

H x

Apologies!

2011-04-22T12:49:00.000+01:00

Kids on holiday.

Sun is shining.

Having a ball!

Normal service will be resumed next week

H x

Bridge Over Troubled Waters

2011-04-16T16:12:00.000+01:00

This blog is in danger of becoming boring. Nothing happens to me that anyone would find interesting so I wonder why I still keep on with the writing of it?

The only answer that makes any sense to me is that it helps to sort out the mess in my head. In the past I have been a great talker. To family, to friends, to work colleagues, to the lady at the bus stop, anyone who would listen and comment. As a style of self counselling it worked very well for me. No one escaped my constant burbling and doing it helped me to see a way through many times.

Now I don't have the same level of social contact that I used to and I've become more introspective. There are many more days of being alone or with the children for company. I won't burden them with my problems (half the time at least they are my problem) so I turn to you. Whoever you are, to help me think more clearly with the issue of the day.

No one needs to answer, no one needs to read. The action of putting words on the screen is enough to help me see. The process of moving from the scrambled initial thoughts and words, to producing sentences from the chaos, through paragraph formation, flow to finally spelling checks and grammer. Helps me to separate the wheat from the chaff, the clues from the red herrings and the important moments from the insignificant ones. Like a filtering system for the psyche.

With all of that in mind I have an issue I cannot blog. I've tried to skirt around it but I don't want to make it worse. The perpetrator is too close! Too loved! I've emailed directly to pour oil on troubled waters but think it could still go either way. I've already said too much.

Maybe in future I'll try to include more pictures!

H x

Eyes Right!

2011-04-12T09:14:00.000+01:00

My eyesight is getting awful lately. Old age is creeping up.

Ever since I was about 17 I have needed an opticians prescription. Wearing glasses was a revelation. I'd never had my eyes tested before and didn't realise people could focus. My world had always had slightly fuzzy edges and to see a crystal clear picture was amazing, and ever so slightly disorientating.

Steaming up when I entered a warm room was a small price to pay. Oh, and being visually compromised in the rain too (not to mention the appearance aspect). It only took me another ten years to discover contact lenses (and be brave enough to try them).

And how do you buy new glasses anyway. As soon as I take off my prescription I can't see, so trying on extortionately priced new frames is totally pointless. By the time you get to see what you look like properly, the money's in the bank and you're stuck with them.

My first contacts were hard plastic and hurt like hell. They needed weeks of acclimatisation, gradually increasing the time I had them in with tears streaming, until I had them in all day. The slightest dust particle was like glass daggers and the complex cleaning routine a pain to remember every day. However vanity won through and wear them I did.

Over time my contacts have evolved and improved into the soft monthly lenses I wear today. No more cleaning routine, no more agony. I pop them in in the morning, and pop them out and into a pot with cleaning fluid in the evening. Simples!

But now as I approach middle age (you wish?) my near vision is changing too. Without any visual correction I can read the relatively small print of the kind that you'd find in a newspaper. Unfortunately that is the limit of my vision. Fine for in bed but absolutely not for moving around or going out. With my contacts in, the world reappears but my near vision is compromised and I need reading glasses for all kinds of labels and instructions. You would not believe how many little labels I need to read in the course of the day, so now I have taken to wearing my reading glasses around my neck on a string. A lá old people.

My optician says I could try bi-focals at a price, but all the time I can get reading glasses for a couple of quid why would I? So for the time being I will just have to give in to the passage of time, and be the middle aged woman that I now appear to have become.

How did that happen?

H x

A Clean Sweep

2011-04-11T20:16:00.000+01:00

Wow! Can't believe a week has gone by since I last posted a blog.

The weather has been so good that I've been outside in the garden as much as possible.

One day last week a friend came to visit. She lives in Yorkshire but had come down to spend some time with her daughter and while she was down she came to see me too. I was so pleased and we went off down the road for a lunch and a mooch round the garden centre. While we were chatting and mooching we found some good quality childrens garden tools. Smaller and lighter, but still made from metal, and with adjustable length handles. Perfect, in fact, for me!

I already had a trowel and fork and now I have a rake and a long-handled dustpan and brush. The patio never looked so good for ages. How sad is it that I spent a whole afternoon sweeping with my mini broom and pan, one slab at a time? Satisfying though!

Hydrotherapy have been in touch, thank goodness after the last failed attempt, and we have a new appointment for this Friday. Second time lucky! My bag is all ready I think. I'm taking towels and cossie obviously and also my wash bag, as I'll need to shower anyway. Clean knicks, cath stuff and dressing and I think that's it. What have I forgotten? Anyone?

Also this week the children are on holiday so there will be extra stuff to fit in around my socialising. How on earth will we manage?

Tomorrow, a trip to Ikea is planned with my sister, my middle son and possibly prodigal daughter if nothing better grabs her attention first. She can smell a spending opportunity from miles away, especially if someone else's money is involved.

Then after a day off on Wednesday, Thursday is full steam ahead with gardeners, hairdressers and prep for Friday evening's trip to London. This weekend I'm gonna be all out of spoons.

Oh carer's here. Gotta go. Bye.

H x

House Update No ?

2011-04-05T12:09:00.000+01:00

OK, I know, I promised house news today.

The last house update was a couple of weeks ago, when we were invited by the housing trust to go and view a house in our road, to see if we would be ok with moving in there. We have to move out of here so that the long awaited significant adaptations to our property can take place.

Well we went and looked. The new house is twenty five houses away from our current one and on the same side of the road. It has previously been the home of an elderly couple and every room is a different colour of the rainbow, sometimes more than one colour and many, many layers of paper and paint. The housing trust however, have agreed to repaint the lot. They will carpet upstairs and hard surface downstairs and they will also put curtains up in the bedrooms.

From the pavement, the house looks to be the same size and design as we are used to, although it is middle rather than end terrace - but looks can be deceptive. Once inside the hall the difference is striking. All the rooms are about a third smaller and the kitchen is tiny. Bearing in mind that this house is completely empty of furniture too. There is space for only one appliance in the kitchen and nowhere for our giant fridge/freezer to go. The lounge is too small for my bed (I believe) and upstairs is just as small (so I'm told).

HOWEVER . . .

. . . my bed might fit in the dining room, the fridge/freezer too (possibly). There could be room for the washing machine in the larder (at a squeeze), if the plumbing and drainage can be sorted, and upstairs might have to be just mattresses and clothes rails! Goodness knows where the commode is going though!

We will just have to manage somehow because the decision is made. The deal is struck.

Anyway there are some pluses.

Because the road is a crescent the garden is approximately south-east facing, unlike the north facing one we currently have, and half the size at least. The grass will be cut and overgrown shrubs trimmed and it will be nice to spend this summer in the sunshine (or the rain - we'll get a gazebo). We'll take the garden furniture so at least there's somewhere to eat, and spend more time outside together. I've already met the neighbours who seem really nice, and invited myself to their BBQ's if they have any. It will make a change to have neighbours who chat and are sociable and friendly.

So that's where we are at the moment. As soon as the date is set (and we're looking at mid-May probably) the removals company will be in touch and things should start happening.

Probably.

H x

The News

2011-04-04T15:05:00.000+01:00

Yay! My daughter is home from uni.

She came home Saturday, after three months away, just in time for Mothers Day. I think (in my cynical way) that the promise of a paid weekends work in a restaurant had more to do with the timing than being there for me, but who knows. Perhaps I should give her more credit. Sorry hun!

Whatever the reason it is lovely to have her home. Each time she returns I can relax knowing she is safe in our home. Silly I know, no reason she is more safe here with us than there on her own, but that's how I feel.

On Sunday morning it was really satisfying to have all the family back together for the day. Eldest son came home for the day and all of them managed without me while I took my own mother out for lunch with my sisters. All-in-all a very pleasant weekend.

This week all is quiet on the calender front. Apart from a little guttering work tomorrow there are no appointments and no visitors pencilled in until next week. Who bets that will change as the week goes on? I hope so anyway!

Also there is news from the car people. After chasing them for the past couple of weeks to find out what was the situation, and being given the runaround, I am now being told that there is a delay (NO S**T!). The car that was to be ready for the end of March (he sounded so confident) is now delayed until the end of May. Possibly! No one seems very sure any more. Questions about the reason behind this delay have gone unanswered although a slippery character on the phone assures me that it won't happen again, whatever 'it' was!

Now I'm resigned to forgetting about it until I have a firm delivery date as there is no benefit to be gained from getting excited only to be disappointed again. One day, I am sure, it will come.

For the house news you will have to wait til tomorrow.

I have my reasons!

H x

Goddamn Periods

2011-04-02T20:34:00.001+01:00

WARNING :- This blog contains references to menstruation, breasts, and other subjects of the women's problems variety. Don't say I didn't warn you.

Are you still reading? That must mean that you are either female yourself, and have every sympathy, or you're a doctor. That introduction will have seen off most of the male readers I expect. My apologies if you don't fall into my skewed idea of the world but there it is.

But I digress!

Ever since I was about twelve years old my periods have been a problem (stay with me this is going somewhere). Even before I started menstruating there were issues around hormone cycles and severe mood swings etc. The doctors nodded wisely and said once I started bleeding things would begin to settle into a rhythm.

At fifteen (much later than most) my monthly bleeds started with a vengence. My second ever period was a humdinger. Away from home on a residential school trip, I flooded badly while canoeing with a group in the English Channel. No one knew. My dark trousers and red sweater hid the majority of the damage and, arriving back, I ran straight to the showers. There I stayed, fully dressed and under the water, until I'd rinsed through all the clothes I was wearing. When the place was empty I undressed in the shower and washed my clothes through with soap and stomped them underfoot til the water ran clear. The largest clots took ages to manually poke down the plughole through all the masses of hair and gunk.

A sanitary towel couldn't soak the blood and clots up fast enough and tampons, although they slowed down the flow, often weren't able to stop it completely. I took to wearing a jumper round my waist to save my blushes and refused to participate in the many water sports available. The staff on that trip thought I was sullen, rude, lazy, uncommunicative and childish. The final straw was when they all headed out for a two day camp on the moors. I refused to go but could not bring myself to say why. Arriving home tearful and anaemic after a week, the teachers immediately reported my behaviour and I emerged, washed out, to another bollocking from my parents.

That was to set the pattern for the next few years. For two or three weeks of the month I was fine then ten days of steadily increasing stomach cramps, swollen, painful breasts and aggressively biting off the heads of anyone who tried to help. Followed by heavy bleeding that left me anaemic and exhausted for the two weeks I wasn't hormonal. The pill was a revelation when I eventually cottoned on (late as usual).

Over the years I've tried multiple variations and combinations of hormones in pills, injections, implants and coils. All in an effort to quell the tiger but to no avail. Oh they all worked in their different ways up to a point, but there were always side effects and frequently babies in between as a result. A hysterectomy was offered when the children were small but at the time taking six days, let alone six weeks out, was impossible. Eventually sterilisation was all there was left but even then the story was not over.

Despite the assurances of the doctors a rhythm was never achieved, even artificially, periods came and went at their own whim. Breastfeeding slowed them down for a time but even pregnancy didn't always stop them completely.

So now I have a mirena coil and I'm sterilized just in case. There won't be any more babies and I'm no longer anaemic but I still bleed irregularly and often heavy enough to be inconvenient. The difference now is that I cannot just pop to the toilet to change a pad (which usually end up scrunched up underneath me anyway) and tampons are impossible (and I refuse to ask for help - eww).

The reason this is my subject for today is that I was meant to be going to hydrotherapy yesterday. Something I've been looking forward to big time. The physio spoke up for me, other people were inconvenienced to make way for me, and he put himself on the line to get me in. Then the day before, for the millionth time, my period started just in time to prevent it happening. Too heavy to risk getting in the pool and too crampy to be bothered about moving around so I felt I had no choice but to cancel.

Now I feel so bad that he was put out and at the same time kinda embarassed. It couldn't be helped but, even though I left a message and apologised, I reckon he's kinda pissed at me for cancelling too. No one has rung to re make the appointment but I really hope they do and soon.

Roll on the menopause that's what I say.

H x

Hydrotherapy

2011-03-30T21:40:00.000+01:00

It bothers me that I no longer do any kind of aerobic exercise. I know I tire easily but it must be possible to get fitter than I am now and maybe that will increase my energy levels. This slug-like existence can't be it!

With this in mind, and also a pot of 'accessing social activities' money, I made enquiries about swimming. There is a leisure centre not too far away and they have a hoist but there are a whole load of other issues to consider. Someone will need to come with me. That means yet another carer as my current agency blew me out after keeping me waiting a month for a reply. I need a person who can drive, help me change, hoist me, help me dry and help me dress. They also need to get into the pool.

And I get cold real quick, so all that effort is for just ten minutes in the water. Is it worth it?

The leisure centre does not have a shower chair anyway so all that is now out of the question. I would have to hoist straight into Slim from the water, soaking my chair in the process. How am I supposed to shower? Ridiculous, having a hoist and no chair! They definitely know how crazy that is now I've enlightened them.

Now I'm hooked on finding a solution so where else could I go swimming? Ideally it needs to have privacy for personal care, a shower chair, a hoist, an exercise class maybe. A private health club? A hospital or school? Another leisure centre?

Who am I kidding? How on earth am I going to get undressed and dressed, let alone getting a costume to disguise my pipework? One piece or tankini (no way a bikini is coming near me)? Shorts or pants? High leg or high waist? With belly bag or without (is that a choice?)? Fitted or big and baggy? Patterned or plain? And am I even supposed to swim in a public pool with a catheter?

Providence came to me by way of the local papers.

There is near me (but not very) a kind of day centre for disabled people that offers a wide variety of activities for all different age groups. I knew it existed but had never been there, as a parent or as a disabled person. They offer various therapies, art classes, gardening, languages, a coffee shop and dedicated childrens facilities including respite care. One of the many therapies they offer is hydrotherapy - at a price.

Could I possibly access this and call it a social activity? Either way I would need help and theirs is all on tap. Hydro has a basic price then they add on extras. Want a carer to help you change? Thats a bit more? Hoisting in and hoisting out? Thats a bit more. Need a physio? That is more. In the pool? That's more too.

Luckily they've offered a date that OH is at home so transport and changing etc is sorted, hoisting we will have to pay for and physio in the pool but getting a day that works for us has saved a small fortune. More for me to spend on that amazing suck-it-all-up costume.

So this Friday, having had my initial dry land assessment last week, I'm starting off with a session in the pool. After that we'll see what happens. Whether I end up having weekly or bi-weekly sessions or monthly depends on what happens this week.

Quite exciting though eh?

H x

Wittering!

2011-03-29T16:49:00.000+01:00

Two days ago I had the most brilliant, amazing day out in aid of my 47th birthday. I am eternally grateful to those who worked very hard on my behalf to make it so.

For about four months I have been telling whoever would listen that all I wanted for my birthday was to go to the beach. To be on the sand and to paddle in the sea, to go for a good long walk and breath the fresh air. Like we used to when our children were smaller. What I should have done, I realise with hindsight, is set a date and said I was going, is anyone else.

But I didn't feel I could do that for several reasons. For a start until I get a car I can't get there. OH has never been all that enamoured with 'seaside' but, he said, if no one else offered he would take me, bless him! Also in order for me to get onto the beach I had in mind, it would take a small team of volunteers.

Around the British coast line there are many seaside towns that offer Landeez chairs to borrow in a variety of different ways. From deposits only, to a small sum by the hour, and although I'd seen this website a few times, describing where you could get them and how, I'd never used one. It looked beyond possibility. The access, the sand, the transfer, the courage to go for it, the disappointment if I couldn't was all out of my range.

Until last Sunday.

Two weeks ago I discovered a small, crack team of dedicated volunteers had been gathered together secretly by my bestest friend in order for our assault on West Wittering beach. If you have never been there I have to tell you it is a blue flag beach of outstanding natural beauty. The sand is clean and the water is clear, and there are few commercialisations. A hot drinks/chips/ice cream shop, a shop selling beachy bits, toilets and showers and thats your lot. Perfect!

The access is generally beachy. Sand dunes and whippy grass abound, making the going hard work at the far end of the car park, and that is where we would normally go for the space to walk around the headland. This time however, we had a chair to collect, and parked for the first time ever in the small tarmacked area near the entrance.

Who knew there was a surf hire shop there? Assorted boards and wetsuits all available and a concrete ramp for the beach!

The chair was too big and bulky to get in close to the car and transferring off my chair would have been no simpler, so I was lifted from the car onto the chair bodily and it was surprisingly comfy. From there on it couldn't have been simpler for the most part. The giant wheels spread the weight across the sand so stopping it from sinking in and reducing the resistance, though I was told it was still quite hard work pushing. My little group did a stirling job.

With the tide all the way out, so we could go around the groynes, we walked from West to East with the intention of eating at a little cafe there, but hadn't really appreciated the difficulty we would have getting the chair back up off the beach. At the top of the beach there is shingle and it shifts beneath your feet/wheels so that every step becomes half a step and threatens to slip out from under you at any moment. Normally by walking faster and charging at it good progress can be made but dragging a heavy wheelchair makes that impossible.

So the girls with me, plus two guys we accosted, by way of guilt, to help, dragged, lifted and stumbled our way to the top. They must've heard our screeching in Bournemouth at least.

After a most enormous Sunday lunch we slid sideways gracefully back down the stones and headed for the waterline for the walk back, not thinking for a minute that the rotters would abandon me to the incoming tide. Passers-by must have wondered as they heard my mock cries for help and the returning jeers and banter. As the waves lapped against my wheels photographs were taken amongst gales of laughter, until BF took pity and rescued me in the nick of time, getting soaking wet shoes and trousers in the process.

Once the early clouds had burned off, the warmth of the afternoon sun made for a glorious spring day just perfect to be on the beach. Without a hint of the cold breeze we half expected, coats and cardigans were abandoned onto my lap keeping me beautiously warm and cosy.

I learned some stuff that day. My BF is my best friend for good reasons. The beach day is back on my list of days out and no longer out of my reach and Don't expect a giant beach chair to fit through the door to the toilets.

We will DEFINITELY be doing this again.

Thank you, thank you, thank you a million times to those who made this possible. I love you.

H x

Coming Up Roses

2011-03-24T19:59:00.000Z

Wow! Isn't this sunshine just gorgeous? All the trees are beginning to blossom and Spring is firmly with us here in the south of England, although the air is still a little chilly in the shade.

My mood is lifted as I've had rather a good week one way or another.

Apart from my usual weekly shenanigans I have:-

Attended year 10 parents evening and been highly delighted with youngest sons efforts at appeasing me (via actually learning stuff and applying himself).
Been for an initial assessment at a disabled persons day centre (at a price) with a view to using their hydrotherapy pool with physio, and been accepted. I start next week. Whoop!
And having seen the list of other activities they have to offer. If I can afford it I'll be well busy.
Met and employed the services of a lovely lady who is to arrange a carer to take me out once a week for as long as I can afford it (once she comes back from her holidays). For things like dog walking in the woods among the bluebells, coffee and gratuitous shopping in real shops (not online), expressionist art and spanish conversation classes at the aforementioned day centre.

. . . and my birthday is fast approaching.

I think this year I have come to the realisation that it really is ok to be completely self interested for that one day of the year. Getting older is not something that bothers me any more, it excites me. Every year that passes is a bonus in my eyes. Another year of adventure, another year with my family, another year LIVED to the max (well maybe not quite the max).

And of course there are the PRESENTS. Mostly I know what I'm getting because although I love a surprise I am quite hard to please and not a good actor. If I get a juicer, I know it's a juicer, I can't pretend it's a spa weekend. Disappointment is written all over my face.

This year I am expecting to be a very lucky girl (I hope) mainly because I have orchestrated most of the presents, either with very heavy (ie written) hints or by directly telling people who ask exactly what I want and where to get it. In my experience everyone has a much easier day if I want what I'm getting and I get what I want. After all, they have had a whole year since the last one to work it out.

AND, this morning I noticed while passing that the decorators have started on the house down the road, where we suspect we may be moving to, in order for the adaptations to our house to begin. I used the opportunity to sneak a peek round the back of the property and check out the access (and peek through the windows) as it's a terraced house with a side alley tunnel thingy. Then five minutes after arriving home, blow me if the Housing Trust didn't ring to invite us to view it next week.

Reckon all it needs is a ramp and a coat of paint and Bob's Your Uncle.

Everything in the garden's looking well rosy.

H x

Grumpy Rides Again!

2011-03-20T17:36:00.000Z

Here we are back at the sugar monster party. Is it a month since the last blowout? I don't know because I haven't stopped for breath to find out. Hmmmmmm. I really need to kick this into touch.

Too late for today though! I've just eaten a whole bag of marshmallows and I feel a bit sick.

Grrrrr!

Why do I do it to myself? Is this a form of self-abuse? Or a genuine addiction? Is it possible to be addicted to sugar? Or am I being manipulated by my own hormone cycle? I wish someone could tell me.

Not that it would make any difference. Just like the alcoholic, I find that one sweet is a sweet too many and the flood doors open until I manage to wrestle control back, usually some months later. There is no such thing for me as just one sweet. I have no idea how some people manage to eat just one small square a day. To make a bar or box of chocolate last all week or month is a minor miracle in my eyes. Once the package is opened it makes no difference how sick I feel I cannot stop until it's all gone. Pig!

Now I have to get everyone's dinner on and in two hours we will be eating again but there's no way I need more food. And it's a roast dinner! Bleurgh!

Added to that I'm feeling fatter than usual. Last week I bit the bullet and went to be measured up for new bras in Marks and Spencers. I hate it! I hate being manhandled, I hate seeing myself in the full-length mirrors and I hate that I can't put them on and off myself.

OH came too to give me courage and assist but he copped out at the last minute and scarpered, leaving me at the mercy of the shop assistants. Three people it takes to manhandle me into a bra apparently. A job that I manage deftly with one hand at home. In order to put on and take off all the different styles and sizes help is necessary but still feels intrusive and three assistants (when they first said make an appointment, no one was available) is overkill.

In between trying on frenzies I sat in front of a full length mirror for the first time in ages slagging myself off. There are rolls of fat over my bra straps and underneath, my muffin top is competing with my armrest for space (and winning) and my boobs sit on top of my thighs. And I'm in a wheelchair. Who knew? It sounds a stupid thing to say but I try never to see myself as others do for a good reason. My reflection is nothing like who I believe myself to be. In my heart I am still fit, healthy, slim, toned. Real life catches up eventually but I like my cloud cuckoo land.

This is the real me I'm thinking of from a holiday four short years ago!

Nothing like this at all is it?

Nevertheless I managed to buy four new bras and they are a damn sight better fit than my usual 'buy it and keep your fingers crossed' job. Was it worth it?

Maybe!

Actually no, it wasn't!

H x

Deflated But Not Defeated - Yet!

2011-03-19T14:21:00.000Z

Feeling a sense of loss this morning. It makes me sad.

Last night I went to a long-time friends house for a birthday party without OH (he's sick). I'd looked forward to it all week and it was a great crowd of people who I was very comfortable with. Party dress on, make up too and all set to boogie on down.

I think the problem is that I have changed, physically and emotionally, yet my expectations remain the same. Without conscious thought I still expect to be able to mingle, to eat the buffet, to dance, to catch up with everyone's news and to a certain extent I still can . . . but it's not the same.

I need to explain more.

It was one of those kitchen parties where everyone is mostly standing up, drinking wine (yuck) and chatting. Moving around, socialising and helping yourself to food and drink. Dancing, catching up and generally taking up space.

To enable access to a house without ramps I have to take Slim (my manual chair). Percy is extremely heavy and I wouldn't recommend trying to lift it, so Slim it is then. That means, as well as the usual kerfuffle, a transfer before I go out (tiring) and acquiring a pusher (finding friends who are local, invited and willing) which only takes four attempts this time. It's getting more difficult to get volunteers and the fact that I had to persuade one makes me kinda uncomfortable before I've even got there. Then, when I arrive at this particular house, I'm lifted over the threshold and pushed through to the party room without too much fuss and parked, clipping the paintwork twice on the way.

The party is already in progress and as more guests arrive I am surrounded by legs. It is impossible to move into a different position and I'm scared to try in case I catch someone or damage something. So I stay there in one place. That's is moving around and mingling out of the picture then.

I'm thirsty as I've avoided drinking before coming out but there isn't a bathroom I can use. They are all good friends here and any one of them wouldn't hesitate to give me help if I asked, but I'm real stubborn. I don't want to be helped; I hate it; I want my independence to move around and operate as I choose.

Also I haven't eaten yet. The food is set out on their dining table, it's not far away, I could probably reach the stuff at the front so I pull myself closer by pulling forward on the nearest pair of trousers. Unfortunately it is one of the few people I don't know so well. Ooops! Really should've looked.

Bread and cheese, grapes and relish. Bugger! The bread isn't pre-buttered, so I eat it dry rather than interrupt the various conversations around me. The knife for slicing cheese is across the table so I pick at the crumbs left by others and eat grapes. No way I'm getting the lid off the relish so I give up. Now I'm in the way and feeling that I'm stopping everyone else from getting to the food so I finally have to ask for help to move away.

My new position is with my back against the wall. I'm lonely. I can't join in, the groups sitting nearest me have their backs towards me and the further away standing up ones are out of my reach.

It really hard to describe that sense of isolation. In amongst the crowd yet out in the cold, unable to take part but desperately wanting to, being there and feeling apart, invisible, unnecessary to the plot.

Snippets are drifting over of the various conversations going on around the kitchen, most of the sound passes right across the top of my head and the music's been turned up now. Even when people stop and crouch to speak directly to me I'm struggling to hear and looking upwards all the time gets tiring. People are starting to dance, laughing, having fun. I've had enough.

But I can't go home. I need a pusher. And now I'm starting to need a toilet too.

Luckily my lovely middle son rings and offers to come collect me if I'm tired. He's an angel.

So I go home all happy, smiling and waving goodbye to everyone and try not to think too hard until the lights are out. Next time I'll be unavailable and my world just shrank a little more.

That's just the way it is. I don't have to like it though.

H x

On The Up

2011-03-17T16:35:00.000Z

Last week I saw my GP for my normal monthly check up and she asked me to fill in one of those how depressed are you today questionaires. It's a while since the last time I did that and had to think real hard to answer the questions honestly. Not so very long ago I can remember my mind being full of getting through the day without harming myself and now here I am thinking hard. It's a good sign.

Nevertheless the results showed that although I am much better there is still room for improvement. So some minor changes were made and all of a sudden I find I'm sleeping through the night. That hasn't happened without medication for the last four years. I was resigned to sleeping in short bursts and had been led to believe it was necessary to keep my skin intact. In fact, it turns out, I can sleep eight hours no trouble and not have any ill effects provided I position myself carefully (no wrinkles etc). Who knew?

This week has been great so far, apart from having youngest son off sick from school. He tried to go in yesterday but is so full of cold they sent him home again. All day yesterday I mooched around town, meeting a friend for lunch and doing window shopping research as my birthday is approaching soon. And today I took middle son for an appointment this morning then tootled down to the chemist and post office this afternoon. I still get a buzz from hammering on the windows and making people get off their perch to tend to me. Well if you don't sort out your access that's what happens.

Recently I've really struggled to make myself get out of the house. Right now I have housewifely jobs waiting that I want to see completed and am pleased to report that I'm getting out there and initiating contact with the outside world.

About time too.

H x

Pas La Fin Du Monde!

2011-03-14T18:54:00.000Z

I've come over all Gallic this week but my school girl french is not up to a whole blog's worth. I may however slip in the occassional faux pas. Bear with me.

With this in mind one day I would love to go to France for a holiday but OH is defiantly anti frogs legs and l'escargot, so if I go I'll maybe go alone. Hmmmm! Holidays with friends are a bit of a no-no. Many good friendships have been permanently scarred by getting too up close and personal. Is it me? But then holidays alone, in reality, are no longer possible either.

There is still a part of me that would love to travel the world. See new exotic places, speak new languages, to see how different people live and experience their cultures. I am fascinated by it. So far in my travels that has not really been the case. Package holidays in Spain and Lanzarote, lovely as they are, don't count in my book as 'exotic' and New York, much as I loved seeing the sights, was too familiar to be stretching my boundaries. I want 'speaking in tongues' and living in huts, igloos and huskies, bedouins and oases, basic living and 'funny' food.

I also want golden beaches with lazy hammocks in the shade and palm trees as far as the eye can see, skidoos and sledges lined with luxurious reindeer skins and steaming mugs of hot chocolate, panning for gold in cold, clear mountain streams and (naturally) striking it rich, immaculate geisha girls in their beautiful kimonos and ritual tea ceremonies. To go spotting herds of wild animals on the grassland savannah and immersing myself in the full experience that is luxury safari camping. To wade in icy streams and waterfalls cascading through amazing gorges and ride rubber bottomed boats in an exhilarating thrill down the white water. Excitement and adventure!

I want digging wells and teaching english, riding elephants and climbing for coconuts, building huts and feeding thousands, caring for orphans and nursing the sick.

Could I do it? No of course not. Wheelchairs and well-digging do not go hand-in-hand. Maybe years ago I could but the course of a life is not planned. There was never a right time to do those things. I was too young, then the children were young, the house, my job, the money and then my time for these things had passed and are no longer possible.

C'est la vie.

N'est-ce pas?

H x

Changes

2011-03-11T13:34:00.000Z

Today is Friday, the sun is out and Spring is in the air.

My OH had the best idea this morning and after breakfast took me to the woods where I used to run regularly with our dog, Mabel. I haven't been there since life ante rota (before wheels) and it was a brilliant idea.

So much has changed.

When you are so familiar with a place that you know it like the back of your hand and then you are away for a while you notice things.

Since I was there last many mature trees have been felled in the name of conservation. It was talked about way back but seeing the wide open spaces today came as a bit of a shock. This beautiful shady woodland with it's ancient pathways had had parts opened out into the scrubland that it was originally meant to be. I'm glad I didn't see it happen. I think I might have cried. I could never be a forest ranger.

The large pond at the woods had been tidied up too, the edges reinforced and the path widened and a new surface laid. From the car park to the pond is designated 'easy-access' and has a relatively level surface (considering it's a woodland). Which is a nice idea but unless they go back to pack the surface tighter alongside the pond the wheels sink in making it very hard going.

The paths we tried which were not designated accessible were easier. The winter mud has dried hard and, apart from a few places where the tree roots stuck out, were passable. I not sure that I'd like to try it in Percy though. Could you imagine me breaking down in the woods on my own? It was hard enough getting going again in the middle of town.

But how beautifully amazing being in the woods, in the sunshine, with the dog and my OH on this glorious day.

I'd forgotten how much I missed it.

Definitely one to add to my repertoire.

H x

Spoons

2011-03-08T16:48:00.000Z

Until I came across the spoon theory through Emma's blog I had no idea why I was so exhausted every day while doing nothing. It is hard to explain, in a way that conveys a meaning I didn't truly grasp myself, how every little task drains my energy. How full of effort and exhausting the simplest things have become and that there is no longer a bottomless pit of energy and resources in my life.

There used to be a bottomless pit and I haven't quite worked out my boundaries yet (I never did know my limits). It seems the more things I do today the less energy I'll have tomorrow. Unlike in my previous life, ante infirma, when the more I did the more energy I seemed to have. It still comes as a surprise to me when I find myself going back to bed in desperation and total frustration, having used up all the spoons for the week by Tuesday lunchtime.

That is not to say that I need (or want) pitying or necessarily any help but occassionally a little understanding wouldn't go amiss. I'm sorry but I can't always make it to the pub, I can't always cook for myself, I can't make that phone call, fill that form, write that email. Not today, not this week. My spoons are all used up.

So today all dates are cancelled, all appointments written off. My bed's a callin' and I'm not getting up any time soon.

Night night.

H x

Housing Blues and News

2011-03-07T14:44:00.000Z

It's about time there was a house update.

There had been little news to raise our spirits regarding the house since this last devastating blow delivered just after Christmas time.

Apart from writing a couple of little snippets, I've avoided the subject completely. It depresses the heck out of me. When it comes to discussing the bloody adaptations with family or friends I try to change the subject. It does me no good to think about it.

As the situation stands at the moment there is little to be excited about and very much to be dreading. Moving house is just my worst nightmare and we have to do it twice. The pressure being applied just builds and builds and the powers that be seem to have no concept of the huge amounts of energy they take from me every time we speak. All the authorities involved have their own agendas, mostly around saving money, and communicate between themselves often, and without our knowledge. This came to my attention again very sharply last Friday.

My personal opinion of the Occupational Therapist appointed by Social Services to oversee our case is not very high. Neither do I rate the Structural Egineer appointed by the Housing Trust, or indeed the housing trust representative, but I believe that in life you have to take what you are given and try to work with, or around it. This is what I have tried to do.

When I was told there was no shower chair that fitted my needs I found one, bought it, then billed the OT for it (and he paid!!!). When the plans for the house were being drawn up I presented my own ideas with plans and these are the ones we are using (and ditto for the original kitchen that was vetoed). Not because they are mine but because it turned out to be the best solution. If either of them had bothered to ask me I could have described what my needs were but since neither of them did I worked it out on my own. How can an OT possibly hope to get it right without discussing, at some point, the needs of the client? Incredible!

Last Friday my OT came to see me and bought his OT boss with him. Imagine my delight when he informed me that he is off to far away places and she is to take over my case (whoop!). His brief to her was that my case had dragged out for double the usual amount of time because I was stubborn, argumentative and obstructive. That they had all tried to accommodate my needs but I had put barriers in their way at every turn. Strange because as far as I know he has no idea what my needs actually are because he's never asked.

She informed me that the Housing Trust had told her a similar story and that she was of the opinion that I could be trouble. Well I could if I wanted to be. I was stunned and lost for words for a second. That was not the case at all and argued my corner that the plans I'd submitted were the better solution for good reasons, but she sided with her professional colleagues. Fortunately, at that moment, we had a visit from my Carer Support Worker who had worked previously with both of them and whose opinion was respected and who had been with me at several of the housing trust meetings.

Once she gave her point of view (which coincided with mine luckily) the OT left sharply and his boss stayed and apologised profusely. She discussed several of my issues around what had been agreed and said she would see what could be done and get back to me. She also talked for a few minutes about how my disability affected me which is more than he ever did. A good day's work, I feel a little better already.

Now we know that a house has possibly come up further down the same road for us to move into. And the Disabled Facilities Grant has been agreed. Further funding from the County has been added and the builders have been notified.

We're all just waiting for a date to go.

I feel sick!!

H x

This Is How I . . . Travel By Car (but not for long)

2011-03-01T14:20:00.000Z

When I am travelling any distance by car there are precautions and preparations I need to take that may not occur to your average Joe Bloggs. For example, I know, if I am going in a car, that I will have help to get ready. So the palaver that is Going Out Independently is greatly simplified although that brings different pressures all of it's own.

Asking for help is like a foreign language to me. Organising a trip with transport (presuming someone else's car) can take weeks to prepare and many failed attempts before the deed is done. And that's presuming they say yes. If it's a no for whatever reason the cycle starts all over. Pick up the phone, put down the phone, change my mind, sweat for a bit, pick up the phone, put down the phone . . . .

But who to take or even ask for help? Do I ask one of my sons to miss a day of college or school? This is the easiest option as far as asking is concerned, the easiest solution for selfish me. But, as his parent, am I then condoning truancy, implying that his education is not as important as my appointment, belittling his worth? So maybe not the easiest from a parent's point of view. Do I ask a friend or family member to miss a day of work? Or take their only day off for my own use? Difficult. I do not want to be seen as a leech who is always taking and never able to reciprocate. Do I ask and hope that they will say no if it really is not convenient? Or do I ask and hope they say yes, even if it puts them out, and makes me more of a pariah than I already feel?

Do I ask my elderly parents knowing that they will say yes if they can? Knowing that Dad's heart is not great and Mum has enough trouble walking as it is. What if his heart gives out lifting my chair in the car? What if the extra strain I put on him kills him off? Elderly parents should be relaxing, enjoying their twilight years being cared for and cossetted, not still having their adult children rely on them. Also that means taking a pusher as well and Dad's driving is a bit erratic!

And that's all without considering the type of car they have. I need a car that's not too high (no four-by-fours, no people carriers) not too low (no sporty little numbers, no minis) with a decent boot (to fit the chair and shopping in) and nice wide opening doors. Now I'm really limiting my choices!

In certain cases it is necessary to have a driver and a pusher and a porter. Catching a minicab to go serious shopping for example at Christmas or for groceries. Clip on wheelchair trolleys are useless for the quantities we're talking about here and the added length makes steering a liability.

So, lets say I've started looking for transport with plenty of time to spare, I have a specific date in mind, I'm taking Slim, someone has agreed to take me, they have a suitable car and we are going there and back in one day.

Now I need to consider the length of the journey. If it is a quick trip to the doctors or shops then there are few extra preparations other than a little dehydrating but for a longer journey things like pressure sores and toiletting (and, God forbid, in-car incontinence) raise their ugly heads. Sitting on an innapropriate surface, like a car seat, for even a relatively short length of time can cause discomfort for several days. Not necessarily open sores every time but a bruised like sensation that persists and if ignored will progress further.

However the process of actually getting into the car does not differ greatly.

Once I've transferred between chairs and been manouvred out of the back door (smash, bash, crash - already quite stressed) I'll lock the door (presuming I'm the last one out) and shoot myself down the ramp towards the back gate, gracefully (smash). That's my last bit of control over the situation. Whoever's pushing then takes me out to the car and (hopefully) will know how to place my chair for a successful transfer. Invariably I will then move it a bit. Parallel to the car is not quite right. So I will tuck the nearest footplate under the chair and pull the front around to create a slight angle. Now the gap is an inch or two bigger but I need to do it. It's a psychological advantage probably but seems to help me round the wheels.

Then someone will go back inside because we always forget something. Usually the transfer board. I'll slide one end of the board (this one is banana shaped to go around Slim's wheels) under my bum/thighs and check that the other end sits on the car seat. This is used to bridge the gap between chair and car. Then, one inch at a time, holding on to the far end of the board, I work myself along the board using my right arm to rock and pull. Once onto the seat the board is slipped out and my legs are lifted round and into the car. The back of the chair needs to be slightly more reclined than most people would have it but there is a reason. If my centre of gravity is placed well back there is less risk of falling forward onto the dashboard every time the driver brakes hard. Placing my legs out long prevents my knees from rocking on the corners but, unless the journey is very long, I won't worry about that too much.

Once the chair is in the car and someone has shut my door (can't reach - I'll fall out) the journey begins. My concentration remains on the road for the whole time. Corners need to be anticipated to stay upright on the chair, as without lateral support I am vulnerable to tipping. By using my head and neck as a counter-balance and hooking it round the headrest on the big corners I am generally able to stay in my own seat in the car. Hopefully no one will want to stop at a service station or break the journey with a toilet stop as travelling and getting in and out of cars is exhausting enough without the extra transfer.

At the end of the ride we do the reverse sequence except this time it's easier. Mostly getting out is downhill, towards my weaker side is easier for some reason and imply's the journey part is over. For now. My OH has a technique that is unique to him and will grab the waistband of my trousers and drag me out. He's the only one permitted.

After a whole day out with an extended car journey such as I did yesterday I am exhausted. My spoons are all used up and today has hardly started. I have a dehydration headache and I need to rest and drink loads before I do it all over again.

I can't wait!

H x

The Final Story

2011-02-27T14:12:00.000Z

Yet again, here I am, preparing to take a long journey for a family funeral tomorrow morning. This seems to be the year for it.

My dad is now the only surviving member of his family. His parents (my grandparents) died more than twenty years ago and his only sister followed soon after. Cancer has a lot to answer for and has now taken his sister's husband as well. They are survived by two son's and their various wives, partners, ex-wives, children and their partners. Life goes on.

What must that feel like? To be the only one left of your generation. The only person in the world who remembers your whole history, your stories, your life. We of the next generation know a part of that story, the part that came after us but we can never know the whole of it. Even if we ask the questions parts will be left out, perspectives lost. With my family together we can tell a favourite story from our collective childhood and we all play a part, all remember different bits of the whole. It becomes a group telling and all the more rich for the abundance of flavours. No single one of us gets the whole picture. What happens when one of those parts is gone? Who will do the telling?

In the last six months we have lost four of the elders of our family and there are not many left. Three aunts, an uncle, two aunts by marriage it sounds like a lot but so many have gone. The umbrella of protection that such a large family afforded us is slowly but surely eroding away and the exposure is keenly felt.

Now at family gatherings we meet in smaller venues, a pub, a coffee shop. It seems like such a short time since we struggled to fit into a church hall and wider family events were few for lack of space to gather.

Nevertheless, for all that sadness, it's a while since we have seen our cousins and played in their perfect-in-miniature garden shed. Gasped at the incredible latest creation crafted by my artistic Aunt and marvelled at Uncles latest technological acquisition. As children we met up a few times a year and there was always a long walk in the woods with Gran, Auntie, Uncle and the family dachshund. These happy family memories from our childhood stores will be dusted off tomorrow and the time in between will be as nothing in the scheme of things.

A celebration of those happy days seems a fitting end. Sleep well Uncle.

H x

Don't Rattle My Cage

2011-02-26T20:42:00.000Z

This evening, after a very pleasant twenty four hours in a hotel, I have had an email from the head office of our little local cinema chain. Inviting me to officially lodge a complaint with them about an incident last week.
In the absence of any inclination to write about the trauma in detail I thought it would be easier to show you the email.

I've altered some of the details to obscure identification but those who live locally will know what I'm talking about. Enjoy!

Dear *******

Thank you for your prompt response. I hope it is ok to reply by email? Fortunately I’m not quite as angry now as I was last week.
On the Friday before last (18th) I was having coffee with my mum. We don’t see each other often as neither of us drives, and we both mentioned that we wanted to see The King’s Speech but hadn’t managed to arrange it as yet. On the spur of the moment I telephoned the (local cinema). I hadn’t been to the cinema for ages as I am a full-time power wheelchair user and the access is poor, both to the lobby, the auditorium and the toilet facilities.

I explained my request, and that the screen had let me down in the past by switching screens after I had booked, and was reassured that not only was the film in the only vaguely accessible screen but that it would remain there for at least another week. The staff were very helpful and I double checked that it was definitely the case for 3pm on Thursday 24th and this was once again confirmed. This was all on the Friday which, I believe, is the start of the next seven day’s listings in cinemaland.

In the next few days I arranged transport for us both, never simple with a wheelchair, confirmed timings, arranged a lunch venue beforehand and changed it twice after access concerns. Worried about access, toilets (or lack of them) and my mum’s habit of cancelling at the last minute.

On the Wednesday evening (23rd) I rang The Screen again, to pre-book my tickets for the next day and check the screen access once again. I’d waited until then in case my mother changed her mind about going, but also to check the weather as I cannot go out in rain, ice or snow. Good sunshine was forecast, mum was positive and even excited about us going out, transport was checked and double-checked.

Then the cinema informed me they had changed the screen. Again!

I couldn’t believe it! What if I hadn't rung?

They changed the screen to upstairs where I cannot go. Devastated does not come close. For weeks I’d cajoled friends and neighbours, take me, take me. I’d looked online and seen all the awards. This film looked good and I really wanted to see it but no one was available to go.

I’d bust a gut to make the arrangements work for us. My mother is 79 and hardly ever gets to go out and my social life is scarce too. The taxi’s booked were to cost us over twenty quid. This was going to be the highlight of our month.

The young man representing the (local cinema) apologised but sorry is a very over used word. Our whole week was ruined.

I do not seek compensation, that does not change what happened, nor do I want cinema tickets as I do not think I will ever try to go there again. Not for a moment do I think that turning us away has stuck in their minds, a momentary glitch. Just one customer, what difference does that make. But it matters a great deal to me.

I just want this to NEVER happen again.

Your staff need retraining to see the bigger picture. Your cinema needs redesigning to allow ALL to partake. You need to rethink a company policy that allows these decisions to be made that excludes disability from within it’s walls.

Only a short, four years ago, I too was upstairs drinking in that cinema bar. It only takes a moment's inattention or illness and you too could become one of the 10 million disabled in the UK, then you may see things from a slightly different point of view. Contemplate that when you decide what path to take with this.

Thank you for listening to my rant.
I wonder if anything will change? I hope so.

I'll let you know.

H x

This Is How I . . . Use Public Transport

2011-02-24T14:26:00.000Z

I'm not sure, from my own personal point of view, if this series of blog posts are a good idea really. It may well drive me crazy thinking of all the little details that make my days and experiences different from yours. Little things that I rage about you will shrug your shoulders over and probably vice versa too.

Also I keep thinking of things that I completely forgot to mention. Yesterdays post omitted breakfast completely and that deserves a post all of it's own. I can feel a new post coming on.

But not today. Today I'm attempting a much wider spectrum covering trains and buses. No point even talking about the tube.

This is How I Use Public Transport

The amount of preparation depends on the distance travelled, familiarity with the route and time left before the journey for worrying. For example a trip on the bus from the end of our road to the nearest town is relatively easy. I know the timetable quite well, I know the routine for getting on and off, where the stops are and some of the drivers are now familiar. They know I might need a little help, and generally don't mind getting up, with one or two exceptions, and it goes a bit like this.

Day before (if I know I'm going out)

Make sure Percy gets plugged in for full charge
Attach night bag and drink loads to hydrate fully over night

In the morning (if I'm still going)

Don't take any laxatives til I get back

2 hours before bus

Stop drinking
Make excuses (in my head) why going out is not practical today ie inclement weather, parcel deliveries
Check timetable (you never know)
Worry about chair breaking down whilst out
Worry about needing the toilet
Worry about being incontinent in public place

1 hour to go

Make sure Mabel has been outside and has water
Clear debris that has accumulated on my lap
Empty cath bag
Turn laptop off
Take grabber off back of chair (always forget this)

40 mins

Get coat on, left arm first etc.
Find gloves and work each mishapen finger and thumb on left hand into right holes (this takes ages)
Hook long handbag strap over onto shoulder to prevent it falling off lap while out
Put cordless house phone back on stand to charge
Attach retractable keys to handbag so I don't drop them (learned my lesson)
Don't forget mobile in case of breakdown (lifesaver)
Empty cath again
Go back and get grabber (or Mabel) for whatever I've dropped on floor

20 mins

Take grabber off back of chair where I subconciously replaced it (or just take it with me)
Exit back door onto top of ramp
Mabel (cleverest dog in the world) pushes door shut on command
Manouvre chair alongside door being careful not to get jammed on ramp edges
Lock door
Wiggle chair backwards and forwards to get off ramp edges where it is stuck fast
Zoom as fast as possible (not very - NHS chair) to bus stop

Bus eventually turns up - late

Hope that no other wheelchair user is on bus
Hope that no elderly will need to get up and move
Hope that the driver knows how to operate the ramp
Hope that the ramp works
Hope the bus is not busy so I have room to manouvre
Wait while those that are able walk on in front of me (ignorant)
Wait while the ramp slo-owly comes out
Wait while driver moves the bus because there is a lamp post in the way (I noticed, he didn't - nothing quite like looking a twit to teach that lesson)
Wait again for the ramp
Check angle of ramp versus likelihood of tipping
Ask driver to stand behind chair if in doubt
Get on the bus
Wait while the driver explains how the lamppost was not there last time
Wait while any shopping trolleys and buggies are moved from the only wheelchair space
Move very slowly to avoid feet and shopping still on floor
Avoid lengthy eye contact/ angry looks/pity stares/missionaries
Smile, sit up straight (as I can) and exude confidence not felt
Hold on tight to stop chair sliding on too fast corners
Maintain eye contact with scenery in vain attempt to not throw up due to travelling backwards/ lifelong travel sickness

20 mins or so later

Allow the bus to empty of impatient passengers, then elderly - then me
Shout to remind driver you exist and need ramp
Repeat above in reverse
Arrive at your destination

Much of the preparation is the same regardless of the reason for leaving the house. The only thing that changes is the level of stress and notifying the various assisted travel schemes.

On the train for example I am required to notify assisted travel 24 hours in advance and if I were attempting a journey of some distance possibly with several changes I would do that, if only to check access. But locally I'll take pot luck. Most of the time they aren't told I'm travelling anyway, so can't see the point of not travelling if they don't know. What's the difference?

So to catch a train, in theory, I should ring first. Let's presume I would.

Up to 24 hours before

Ring assisted travel to arrange ramps required and check access, lifts etc
Write down times of trains, contact number and reference number for journey
Take it with me in case of TROUBLE

2.5 hours - 45 minutes before

Leave house as above

Trundle to station making sure to get right platform as lo-ong way (30 mins) round to other side (no access to change platforms)
Then, depending on platform, either

buy ticket from kiosk with too high counter after negotiating 300 yard detour (slight exaggeration) up ramps and along platform

use ticket machine with screen above eye level and perfect angle for reflection to obscure all details

Make sure any platform staff know which train I need to catch.

As train pulls in

Watch out for the only carriage with a disabled sticker on or near the door
Even on a long eight carriage train there is often only one.
Sit near the front of the platform where the guard can see me clearly waiting and waving wildly.
Tell the guard I booked travel whether I did or not to avoid lecture.
Wait while a ramp is summoned, either from on the train or on the platform.
Wait while two guards discuss whether this is the right ramp for this type of train.
Wait while they find a different one OR pretend I don't know that they are making do and use it anyway with my fingers crossed (I can always sue them later if I find I can't walk ha ha ha)
Wait while pedestrians push in front of you and step over the ramp (ignorant)
Get on the train

Then do it all in reverse at your destination where (hopefully) they are expecting you

At the other end of the journey there are always a few moments waiting, especially at terminal stations, while I wonder if I've been forgotten about. It has happened before at Waterloo. Mainly for that reason, on longer journeys and into places like London I would try to take A N Other with me as security.

Although if no one's available it wouldn't stop me going, just makes me feel a little more vulnerable and a lot more vigilant.

Then repeat above at every station until you reach your destination.

See. Seemples.

H x

This Is How I . . . Leave The House Independently

2011-02-23T13:40:00.000Z

Some friends have commented on my blog from a few days age entitled Big Night Out. It may seem crazy to you but it genuinely never occured to me that other people don't realise the trouble and organisation it takes to get me out of the house.

I just thought it was bleedin' obvious.

That could be in part because I hover on the cusp of the autistic spectrum. My levels of procrastination have to be seen to be believed and doesn't everyone already know what I am thinking?

No! Oh! . . . Well then I'd better spell it out for you.

Here starts a short series of posts in the This Is How I . . . . .kind of vein. Beginning with . . . .

This Is How I Leave The House Independently (as opposed to being with help or by car)

Once or twice a week, as regular readers will know, I volunteer my help at a local infants school. Mostly reading with the children but occasionally cutting paper to size with a guillotine or sorting files etc. Nothing too taxing.

I have a class that are used to me and work through the children who could do with the practice the most. Every morning at around 10.15 these children have an assembly then their morning break before coming back in for an hour before lunch. This means I need to be there either at 9am to get an hour in before assembly or wait til 10.45 and do an hour before lunch. It suits me to take the early shift.

Therefore in order for me to be at the school for 9am it goes something like this.

7am

Alarm goes off and I fall back to sleep.

7.05am

Second alarm goes off and I turn it off and try to open my eyes.

7.10am

Wake with a jolt. What time is it? Oh good not too late this time.
Shout to the children to wake up.
Sit myself up using the electronic bed controls. Not too high, don't want to slide sideways.
Lie the bed back down and stuff pillows either side then try again.
Lie the bed back down, grab the headboard rail and pull myself higher up the bed, then try again.
That's better.
Shout children it's time to get up.

7.30am

Shout again then listen for movement.
Remove bedsocks and check heels for sores.
Check that bed is dry and disconnect night bag from catheter.
Shout to children they will be late.
Try ringing their mobiles but no signal indoors.
Drink water left out last night. Just about time for it to drain through before school if I guzzle now.
Worry about toilet facilities at school.
Put on socks, and get trousers over feet and knees.
Shout again.
One child emerges "You don't need to shout".
"Have you got my keys/mobile/bus pass etc". Like yeah I've hidden them for fun. Doh!
Tell children the time calmly as neither watches the clock.

7.45am
Shout for other child and hear thump in reply.
Listen as they bicker in the kitchen. I'll only intervene if things get heated or too personal.
Middle son leaves for bus stop slamming out of door as he is late.
Youngest son slumps over kitchen counter while lunch makes itself - only joking.
Lie bed down more flat but so that I can still reach trousers and slowly inch them under my bum one side at a time. Lots of physical effort.
Get my breath back before attempting transfer to chair.
Sit bed up bit more and slide transfer board under bum as far as possible.
Sit bed up properly so that I'm now sitting on the board and bring the height almost level with chair.
Inch across board using my own weight and arm strength to facilitate slide down slight incline.
Pull/push/wiggle til I'm on the chair enough to slot the missing arm rest into place.
Adjust posture.
Ask Mabel, the cleverest dog in the world, to fetch grabber.
Use grabber to tuck night bag under bed.

8am

Tell youngest child the time again and "five minutes (to go)".
Put bra on back to front then swizz round before putting arms through and adjusting fit.
Choose top from vast array available (sarcasm) and check old lady face in mirror. Who is she?
Attach extra-long pipe (home-made gadget) to cath tap to facilitate in case of need to wee at school.
Good facilities but unable to transfer to toilet independently hence extra length needed.
Finish dressing and brush hair through observing sticky out bits and frizzy grey streaks with slight sigh!

8.05am

Youngest child's mate waits while youngest puts on shoes, coat and remembers all things that he has had all morning to gather together - but didn't.
And leaves for school. Unusually no row this morning. Still on speaking terms with both children. Hurrah!
Ask Mabel - cleverest dog - to fetch house phone before it starts ringing.

8.20am

Take myriad of pretty coloured pills and swish down with last drop of bottled water.
Put contact lenses in. This is still a little precarious in that I often drop them. The skills required for fitting contacts kinda rely on a two handed system. Nevertheless I am persevering with this.
Cleanse.
Moisturise.
Make-up (if I can be arsed) (I'm pretty much gorgeous either way)(tongue-firmly-in-cheek)
Lay bed flat and high and tidy pillows and covers as much as I can (be bothered).

8.45am

Running out of time. Should be leaving home now.
Mustn't forget to empty cath bag before leaving.
Tear off sachet of laxative.
Brush off powder spilt over my lap when sachet tore.
Try to find cup or mug left out as cannot reach cupboard. Finally get one out of dishwasher.
Rinse off previous users scum and fill with warm water.
Manouvre around laundry left in middle of kitchen floor to get teaspoon to stir it.
Drink quickly as it tastes foul.
Get laundry into machine and turned on.

9am

I'm going to be late again. OK?
Undo catch on coat cupboard then wiggle back and forwards to open door towards me an inch at a time.
Get coat out of cupboard by reversing into the cupboard as much as possible then using grabber to flick coat off hook.
Get coat on like small child, upside down and arms first, then flick whole thing over head.
Grab handbag off end of bed and abandon house phone, grabber and sundry clutter accumulated on my lap.
Look out of window. Do I need gloves?
Get gloves out and put them both on.

9.10am

Open back door and Mabel rushes out for wee, sniff around etc.
Reverse out of door onto top of ramp and persuade dog back inside.
Cleverest dog, aka Mabel, closes back door.
Open back door and go back in for keys and mobile.
Reverse out again and lock door.

9.15am

Get to bottom of ramp and realise I have not emptied cath bag so go back and repeat all over again.

9.35am

Finally reach school half hour late.

Even writing this down I'm thinking it sounds so simple but all the little details take so long. Moving the chair into position is a separate action from the task itself and the two cannot take place together when there's only one hand. Move the chair, reach for the grabber, stretch to the target, replace the grabber, move the chair . . . . and so it goes on.

Does that help?

Any suggestions for further This Is How I . . . posts?

H x

The Light at the End of The Tunnel

2011-02-22T18:53:00.000Z

By looking out of my window I can see that Spring is on the way. I love this time of year. After the misery and darkness of Winter the first spring flowers are starting to open and the terrible winter that was promised in the December weather news just never materialised.

Many reports were predicting the worst winter for 300 years and in December the early snow and below zero temperatures appeared to confirm that this was indeed going to be the case. Thankfully it is now nearing the end of February and the temperatures have been above zero since then, more or less. In this area at least there has been no more snow and very few frosts. I can only hope that from here it is plain sailing into the warmer spring waters of March, April and May.

In my garden there are buds on the daffodils and snowdrops and crocuses have been opening for the last couple of weeks in a beautiful splash of colour among the remaining autumn debris. Early tulip leaves are through the ground and leaf buds are beginning to fatten on shrubs and trees in the warmer areas.

In the sunshine the warmth is becoming more palpable and shadows are definitely moving back up the garden exposing ever more ground to the warming rays.

This week I've had the gardener back in to start on the clearing of last seasons remaining deadheads and some heavy spring pruning. We're a little early really but in anticipation of moving out some time soon I want to be ahead of the game. When we are gone I suspect no work will be done on maintaining the garden for three months if not four although I have asked her to pop back she may not be allowed to by the builders. By the time we return the overgrown plants will have taken over the asylum. Have you ever seen Little Shop of Horrors? I rest my case!

It will be a few more weeks yet at least before I can trundle down the garden and cross the grass without filling my wheels with mud. Until then I will have to be content with shouting instructions from the patio.

Grrrrr! So frustrating. There's nothing I would enjoy more than slipping on my wellies and getting a spade out to dig the borders over before starting my spring mulch.

H x

Meet The Gang

2011-02-20T13:40:00.000Z

What a great night!

To celebrate a girlfriend's birthday a group of friends - henceforth known as 'The Gang' - assembled in a pub nearby. We had a plan! Starting off in the pub for starters then adjourning across the road to a yummy indian restaurant for the main course.

Why do some pubs have the music up so loud? No one is dancing are they? Turn it down. The only table available was right under the speaker and I am a bit mutton. Trying to follow a conversation with multiple strands is virtually impossible anyway without the added cacophony of blasting pub pop. Or am I just a bit too old for all that noise?

Having supped up, the gang crossed the road to the indian where they had an enormous step to climb. Forgot all about that when I enquired didn't they? And a very narrow footpath outside, that some ignorant four-by-four driver had seen fit to park two great big wheels up on and made it even narrower. Not a problem that is insurmountable though, just irritating. With a bloke on each end they carried me aloft and through the double doorway a la Cleopatra on her golden ceremonial litter.

While we waited for our table to be ready (there was some mix up with the booking - their fault) I invited myself to join a couple on another table and got their whole life history in ten minutes. Amazing how much you can find out from complete strangers, maybe it's the chair? Soon we were seated and ordered but knew we'd be waiting a while. All food is cooked fresh and the service is not speedy but oh my goodness it's worth the wait.

The food in that place is sublime. Just the right combination of spices to tickle the palate without burning off the taste buds. Deeelicious! I will definitely have a vegetable byriani in there again. Yummy scrummy!

Which makes up in some small way for the total lack of any disabled toilet facilities. But I knew that before I went so accepted the invite and went on those terms.

And so the night went on. One of those amazing nights. Good food, good friends, good company, good wine. Good gracious is that the time?

H x

Big Night Out

2011-02-19T17:36:00.002Z

Tomorrow is my friend's birthday so tonight we are out on the town. 'We' is not OH and I but a whole big bunch of friends who are swinging by to pick me up on the way.

So, with military precision my 'going out' plans have swung into action. Whenever I have advance notice of a night out it goes something like this.

Up to one week before

Buy appropriate present and card and check there is enough wrapping paper - this time I bought the present a month ago and I'm quite excited to give it to her as I think it's lovely and I want it.
Check if I need to supply food or drink if it's at someone's house (fingers crossed no prep involved).
Ask boys to bring going out clothes down for me to peruse while OH is out (too stressful for him).
Cancel all plans for the following day in anticipation of dehydration headache.
Ring the venue to check on access and toilets and, even if I've been there before, worry anyway.

Forty eight hours before

Get whole outfit together as no guarantee anyone will remember (including me) on the day.
Worry about outfit.
Wrap present.
Buy food or drink if appropriate.
Worry some more about access and toilet facilities.
Worry about transport and which chair I can get away with (comfort vs weight).
Text friends for advice about access and ask for chaperones/pushers.

Twenty four hours before

Stop taking regular laxative and drink plenty in preparation for dehydration on the night.
Try to get hair washed and dried - not always possible as this depends on who is around or available.
Get a night bag connected so that I can fill up on water overnight to attempt to negate impending headache.
Spend the night making emergency plans to allow for lack of access and poor (or non-existent) toilet facilities.

On the morning of the day

Dress in the bottom layers of the outfit for that night - as I can't change without transferring back onto the bed and that would be a huge hassle - and hope that nothing gets spilled on them during the day.
Check shoes for tonight are clean and out where I can reach them.
Decide not to go as it's too much hassle for me and everyone else. then change my mind at least twice.

Four hours before

Stop drinking.
Stop eating.
Wear an apron if I'm still fairly clean.
Make sure children know I'm going out and where to contact me.
Text friends who've volunteered (hopefully) what time I need to be ready - reminds them not to forget me too.
Find volunteer to get coat out of cupboard if not already out.

One hour to go

Feel quite sick and sure that access and toilets will be cr*p and filled with surplus stock.
Use commode.
Change wet knickers and pad (not always these days - hurrah!)
Change top layer of clothes.
Get out bigger shoes as forgot feet would swell.
Take pills inc paracetamol as transferring.
Brush hair.
Do make up.
Have the last wee of the night.
Spray perfume to cover smell of urine.
Coat, scarf, gloves.
Handbag, present, food, drink, money.
Transfer into Slim (manual chair), if I have to, last thing as now immobile.

And go.

H x

Stuff

2011-02-19T14:00:00.000Z

Was it really just two days ago that I spent all that money on clothes? I'm still riding the wave of new purchase adrenaline that is feeding off the confirmation email that includes pictures. It's quite sad really!

Having been unwell this week Valentines Day was postponed so tonight OH and I are out unaccompanied. We've settled for a pub meal and a film at the pictures. Dinner was my idea and the film he has been looking forward to for ages. You never know I might enjoy it!

'Paul' is a road trip movie about two geeky blokes travelling across America taking in a sci fi comic convention. On the way they accidentally pick up a real alien with bad habits who is being chased by the feds and eventually by several other incensed american streotypes.

That was all yesterday and dinner was too rushed in the end but the film was ok. It is a Simon Pegg movie and I do quite like his humour. Not as good as Hot Fuzz but ok. Bearable.

I can hear Sainsbury's online grocery shopping calling me so I'm going to sign off.

Sorry this is all a bit disjointed today.

H x

Spend, Spend, Spend

2011-02-16T21:45:00.000Z

One of my biggest vices (along with moaning a lot and being uber-self critical) is shopping. Any kind will do but the best is clothes and especially when I really don't need them. All sorts of apparell does the trick, shoes, tops, bottoms, dresses, shoes, underwear, shoes, handbags, jewellery and it doesn't even need to be for me to rock my boat.

Today has been particularly bad.

Earlier this week I picked out a total bargain pair of khaki military boots and an end of

season, khaki, fake leather, military jacket that I really (really, really) liked and my intention (I swear) was that I'd get OH to buy it and tuck it away til my birthday (ages yet). Unfortunately OH kinda missed that bit and stuck the jacket in my wardrobe and missed the giant hint about the boots completely (posting a picture on his facebook profile was way too subtle).

Then I remembered that I was actually a bit old and maybe should be looking at more classic clothes and not teen trends. Trouble is I'm drawn towards the military boots and studded jackets that young adults my daughter's age like to wear. So maybe if I wear the jacket (that I have to keep as it would be rude to send it back now) with a long dress or understated leggings and matching top I can get away with it. These are the thought trains that I caught on my journey to a small overspend this morning.

So now I have the jacket but no shoes to wear with it (my theory is that if the shoes and jacket are a match anything goes). Turns out khaki is a difficult colour to match with any accuracy. But if I trawl the usual suspects on the internet something is bound to pop up, right?

You know what happens if you go looking? Stuff jumps out at you. A dress here, some boots there, a few pairs of tights, another dress, some jeggings (did you know you can get treggings too? No idea what they are so I bought some of them too) and my various baskets grew to enormous proportions.

one pretty dress in the basket

In my defence a fair bit of it went back out of the baskets too. I didn't buy the mary-jane shoes, the studded gladiatot sandals or the soft white shirt, and the military boots that were a step too far went back on the shelf too.

However . . .

. . . I did find (eventually) a really nice pair of peep-toe shoe boots that look a pretty good match for the jacket and will round off my outfit beautifully and more stylishly than the boots I'd wanted originally (and some matching sunglasses too). Fortunately for me I don't need to be able to walk in them (although getting my feet in might turn out a little troublesome). I will however have to do something with my grossly hairy, pasty white winter legs if they are going to look this good.

My little wobble about dressing up as mutton seems to be quelled for the time being. The clothes that eventually made the final checkout were less 'out there' than my original purchase but the combination will suffice. Once mixed together I think I reached a balance that I can live with.

And now,as an added bonus, after a few days of not feeling so good, I think I'm on the mend. My voice is whispery and quiet (for me) and very croaky but there are definite signs of life returning and I'm feeling more myself again.

Maybe the NHS could learn a thing or two from my self-prescribed spending spree and cough up for a handbag?

What are the chances?

H x

All About Me!

2011-02-15T11:54:00.000Z

I could write a blog post today. There is plenty of time, but I don't want to spend the time moaning again (even though I'm still poorly and my voice has gone completely now) so what should it be about?

World news in general? The state of the global economy? Riots? Genocide? Social breakdown?

Aren't there enough people commenting on all that.

Media propaganda? Character assassination? Political bias? Governmental inadequacies?

Or should I come closer to home. A Farley news update? The childrens whereabouts? My familial concerns? Memories from times gone by? The house? The car? The bloody care agency (says it all really)?

Or is it enough to write a blog about writing a blog?

There are probably as many reasons for writing a blog as there are blogs. For me it's primarily a means of communication. To make me feel like I'm still a part of the world outside.

It helps that I enjoy writing, enjoy the whole process. From the first glimmer of a thought to the expanding of ideas and even the editorial parts like checking comprehension and correcting my grammer. It's a satisfying process.

Also it helps me to make sense of my world, to order my priorities and vent my frustrations. A way of self counselling that does not involve sharing with a stranger or leaving myself vulnerable to my own self criticism by blurting out indiscretions. Of being angry and outraged even when it's inappropriate, or my own bloody fault, and no one gets upset or shouts back. I can edit in or out any parts I am not comfortable with after they are on the page and no ones any the wiser. I can be as wrong or as misguided as I like and the statement still stands.

There is probably a medical name for people who think they are always right even when they know they are wrong!

So, knowing that, it is hardly surprising to find that this blog is mostly about my world, my family, my problems.

And nobody else's.

H x

Pity Fest 2011

2011-02-14T14:08:00.001Z

Today I've woken up and I'm just a little bit poorly.

Not enough to win any 'who is the poorliest' competitions (oh is it just us who has them?) but enough to feel sorry for myself.

No where near manflu, not even a cold really. Bit of a sore throat, bit of a headache, bit of lethargy, achey, really thirsty, but mostly just feeling sorry for myself.

This morning I really didn't want to get out of bed, not just a bit tired but enough to want to cry instead of moving. In that situation the best thing for me to do is just get on with it without whinging. See! Not really all that poorly then obv. It helps that it's bath day. Would I still have gotten out of bed if it wasn't a Monday? Probably not.

I'd still quite like to get back under the covers and it's past lunchtime now. The bath helped. At least I'm not curled up in a corner (hypothetically speaking) any more, or moaning quietly (or not) about how unwell I'm feeling. That moment has passed thank goodness. So I am a little better.

Oh yeah . . and Happy Valentines Day! This is the day when good friends, partners, lovers, girlfriends, boyfriends, and husbands or wives get to celebrate their love for each other, if they're lucky, and dates back to the death of St Valentine in Roman times. Will you be celebrating? We are off out for an intimate dinner for two and will be exchanging small gifts too (well I am for sure - won't know if my beau is til later). Illness will have to be disguised and not mentioned til tomorrow. I'm not that sick that I can't postpone my whinging for twenty four hours.

My temperature is 98ºF. Is that high? Not really. On the way up though maybe? OMGGG!! I can't be sick this week there's too much to do.

Listen to me moaning. What a hypochondriac!

Am I turning into a man?

H x

Rain And Reunions

2011-02-11T11:40:00.000Z

Yesterday it rained ALL DAY - and today looks like more of the same. So it was lucky that the only going out I had to do was as far as hospital transport. I never thought I'd be glad about that!

An urgent appt had been qiuckly arranged as the day before I'd refused the alternative of sitting in A + E for six hours while they faffed around. Surprising how flexible hospitals can be when it suits them!

Anyway it's all sorted for the time being until five weeks time then we'll see what happens. Time will tell.

Also, next week I have a post op check up after my little disaster at Christmas. It will be interesting to get their interpretation of the events that unfolded. I never did write a blog about it did I? Oh well. Stuff happened that docs said had happened before but made the nurses run!! Frightened the life out of me and happened twice more overnight. Hence the explanation. "It's happened before" is not much comfort to me. I want to know why, at the very least they owe me that. I hate hospitals with good reason. Why is nothing ever simple?

Tomorrow I have an old school friend coming down from Yorkshire to stay overnight. It will be fabulous! She and I only got in touch again about two years ago despite our daughters being good friends for years. The connection wasn't found until, by chance, her maiden name was mentioned just as she was planning to move north, but we've stayed in touch since and have a mini-reunion planned for Saturday evening with an oriental theme. My responsibility is for the starters so I scoured the frozen food section of Sainsburys and now I'm really looking forward to it.

We have rarely had overnight visitors due to lack of space but now that our daughter is away in term time and the eldest has left home it is easier to fit in small people. As long as they don't mind me getting naked in the lounge at bedtime. Until the house is altered there aren't many choices and anyone who is embarassed can always leave the room.

There are two other friends coming too and we are eating at one of their houses so we'll have to get OH to drop the food off earlier. I won't even have to warm up my frozen party food. Sneaky huh? That was not my primary reason of course but as a by product it's a pretty good one. Love my friends :o)

And of course Friday night = pub night (if the rain eases off).

That will do for today.

Have a good one.

H x

Lucky Day

2011-02-09T16:20:00.000Z

Had a stroke of luck this morning.

We were expecting an early delivery of appliances for the new kitchen. Early as in from 7am in the morning, not early as in before the work starts, although either would apply because as you know, it hasn't started yet. At QUARTER PAST SEVEN they rang to say they were nearly here and I was still in bed. You never saw me dress so fast! My own fault. I knew they were coming and tried to sleep through it.

In the end it was another forty-five minutes before they actually knocked on the door. That's lucky . . . but that's not the best lucky bit yet.

I had planned, once the delivery was here, to catch a train into town and get a new metal watch strap adjusted and post a couple of parcels. However, I also needed to make a couple of phone calls first so I hung around for a bit. My thinking was that the shops would not be open that early anyway so first I rang the district nurse's office. It was still too early for the office to be open and I planned to leave a message. There's never anyone to answer the phones . . . usually. The nurse was not happy. "You need to ring the hospital" was the advice given. So, reluctantly, I rang.

"You need to come in" they said. They would! It's never simple.

That's not the stroke of luck either, funny enough!

Meanwhile, in between waiting for the hospital to ring back with transport news, the structural engineer for the house turned up with his tape measure. So I took the opportunity to berate him over the balls-up with the kitchen. While he was pleading for his life the conversation took a fortuitous turn. He walked into (literally) the boxes of appliances and asked about them. Turns out none of the emails I sent (likely story) enclosing the measurements of the appliances have reached him. So while he was here we measured the individual items and took out the instructions and photocopied the front page of each containing the relevent information that he would need. Now there is absolutely no excuse! Or so you would think.

And just to be double sure I emailed them as well after he'd gone. Well bits of paper can go missing you know.

How lucky is that?

H x

Who Am I To You?

2011-02-08T11:03:00.000Z

This morning I am in contemplative mood.

It has occurred to me that I am a whole bunch of different people depending upon my situation and the company I'm keeping. And I don't like all of them.

Is this true of everyone?

In one small group of friends I am an older (only slightly) experienced advice giver. They ask and I wisely dispense my snippets of wisdom (they probably then go away and snigger at the daft old bat). Never afraid to be embarassing or cover an intimate topic often in far too loud a voice. Oops!

In another I am quieter. It's a larger group and I struggle to keep up with the fast moving conversation but they are lively (for old uns) and I really enjoy their company. Often they meet in difficult to access , noisy places but I kinda like that I'm not the sole focus of attention for them. Just another member of the group. They know that I'll ask if I need their help, and sometimes I just can't go, but I prefer that to feeling like I'm holding them back. They just forget I have wheels. Isn't that brilliant!

A more recent friend(?) uses me to dump her problems and rarely asks about mine. It makes me feel useful and I have a strong need to help rather than be the recipient all the time. Though I'm not sure how long this will last. We all need at least a little give and take, don't we? There's only so much dumping I can stomach.

With my immediate family I am the matriarch, the head of the household, the decision-maker, the disciplinarian and the accountant (although not the provider). All household policy passes through me, whether by democratic vote or by pschomanipulation - don't knock it if it works! A strong presence with the children's best interests at heart -even though I sometimes get it completely wrong.

In the wider family I am mostly submissive. Not seen, not noticed. There are too many loud characters already to compete with that, I gave up long ago. Clashing dictators with overopinionated egos dominate the skyline. Easier to sit well back and watch the dust fly. Then escape quick as possible before you get dragged in to the conflict. Makes me feel queasy just thinking about it.

It strikes me as very peculiar that I can be so quiet and invisible and yet loud and forthright in the same day. Confident on the outside yet shaking in the middle. Never quite knowing which of these characters is the one I most identify with. The one that's the real me.

Jury's still out I guess.

H x

Just News

2011-02-07T20:08:00.000Z

Today is Monday.

In the absence of anything positive to say I'll just stick to the news.

Last week I . . . . .

. . . . .went to outpatients for a check up after my op at Christmas to find I have two different infections running concurrently that cannot be treated together so I have a month of abx to look forward to. Lovely. That also means that I now have a post-op check up, check up to look forward to. It just keeps on getting better.

. . . . . filled in the financial assessment forms for our Disabled Facilities Grant and the spec has been sent out to tender. Once the quotes come back - as far as I can tell - we should be ready to send it all in to the grants people and that's it. Ready to roll. I can't wait - not!!

. . . . . ordered a takeaway for my mum, two sisters and bezzie friend one evening. I thought it would be nice to get together more than twice a year as we all live within a three mile radius. Working full-time or part-time sucks all your spare hours, especially when you have a family too. It's not my situation now but it has been in the past and I totally get that. It was a mistake. I won't do it again. Nuff said.

. . . . . planned a trip to Ikea (well technically it was planned for me but I was def invited) but it never happened. So many times this year I have suggested Ikea and been blown out that I'm starting to suspect a conspiracy. But surely not . . .

. . . . .sat on the sofa cuddling with my sons while watching TV together. Nothing outstanding you might think until you learn that getting onto the sofa takes a drop of fourteen inches across a gap of six inches and a big ol' heap of gravity. Getting off however takes two or three people working in harmony. Still well worth the effort though. You can't beat a sofa snuggle with the people you love.

. . . . .spent two WHOLE days washing, drying, washing, ironing, drying, ironing until it was all done. Until tomorrow then I'll start all over again.

Just another average week and still no date for moving.

Don't know if that's good or bad though. Bah!

H x

Apathetic

2011-02-02T19:38:00.000Z

My moroseness persists.

Having given in to the pressure applied by foul means, the house adaptation is racing ahead with or without us, mostly without.

My blog activity is down to once a week as a direct result of this. Who wants to read doom and gloom when it feels like that's all there is?

Actually I wonder now if this was the plan from the beginning. Get us onside and looking forward, then deliver a devastating blow to try to incapacitate logical thought. Worked on me anyway. How many times have they delivered this same news and seen the effect it has on families. Am I paranoid? Maybe, a little.

Tomorrow we will be subjected to a financial assessment. The house does not belong to us, will never be ours but still we will be expected to contribute towards the cost of the work. We will never own any part of the extension work nor will we ever gain any financial benefit in the future but still we are contributing several thousands of pounds. Then the house will be re-evaluated as a four bedroom larger house and the amount of rent we pay will increase accordingly. Even though we paid towards the work and technically own a piece of it, we will continue to pay rent ad infinitum for it.

Nice, huh?

I'm empty. Lethargic. Indifferent.

Not a great blog. Sorry.

H x

Our House

2011-01-27T18:49:00.000Z

Twenty years ago (almost) we moved into this house with two small children and a new baby and it was in a very poor state.

The walls ran with brown grease. The kitchen was particularly filthy and several walls were so bad they needed re-plastering. The ceilings were cracked and hanging down, as was the wallpaper, and every room in the house was in need of redecorating. Every carpet was minging, ripped and sticky and had to be removed and disposed of. The previous elderly tenants had refused the council entry and, after the wife died, the husband just stopped cleaning - himself or the house.

In the kitchen there was a cracked butlers sink, that leaked and that was it. No cupboards or shelves, no appliances and no heating throughout the house apart from a coal fire in the lounge and a coal fired boiler for heat and hot water in the dining room.

Meanwhile in the garden there was bindweed, brambles and all manner of car parts and sundry bric a brac half buried. The grass had grown to shoulder height and broken glass littered the whole area. All the fences were broken down and rotten and in some places patched with barbed wire and wooden pallets. It would be three years before the garden was safe enough that children could play out unsupervised

Middle son was five weeks old.

Luckily it was early summer. We had a few months to polish up rusty skills (fortunately learned in childhood) like how to chop wood and how to keep a real fire burning overnight. Skills that would be essential come the winter months and pretty important right from the start if we wanted to have hot running water.

A few weeks after moving in, new kitchen cupboards appeared, a bathroom was installed and (luxury indeed) an immersion heater - as back up for the boiler - kicked in.

That first year was hard. With the children to see to and a baby who was failing to thrive as well as the house to sort out, we struggled. Money was tight, or non existent, OH was made redundant and three wasp/bee nests in the garden and loft urgently had to be cleared.

Nevertheless we made headway. We painted and cleared and papered and patched. Every six months or so another room emerged. Woodwork was repaired or replaced, heating installed, patio's laid, walls were scrubbed and scraped, children were shuffled from room to room while we worked well into the evenings as they slept.

And eventually over time a home emerged from the ruin that was. A place that was ours (whilst still being technically their's), that was comfy and cosy, warm and familiar. That we were proud of, that we'd worked hard on keeping nice, that we'd scrimped and saved and spent money we often couldn't afford on.

And now the housing association want it back.

They tricked us into a safe place by offering to build on an accessible kitchen. They gave us a catalogue to look through and asked that we choose what we needed. They offered colour charts and tile charts and various floorings. They offered to help with the plans and we all sat down together and shook hands and agreed. Then they went away and plotted to do as they please.

Today my home was taken from me. They came mob handed, at short notice and bullied me into agreeing to do what they wanted.

Oh we still have the house but we've lost our home.

That's how it feels.

H x

"You Know You Want One!"

2011-01-25T12:25:00.000Z

At the risk of repeating myself . . . .

. . . "It's not fair" . . . (in a childlike whiney voice).

Yesterday I went to a very sad, but becoming all too common, family function but that's not really what this is about. After the churchey bit was done we all adjourned to a little tea room that had opened especially for the afternoon. As all good, self-respecting tea rooms would, they laid out afternoon tea comprising mugs of soup, triangle sandwiches (triangles - well posh), and little cakes *licking lips*.

Regular readers will know that cakes = bad news.

It all started off so well. A mug of leek and potato soup came my way and, even though it was watery and not brilliant I finished it. Isn't it funny how easily we slip back into our small child status. Even though many years have passed and we have grown into mature adults with families of our own and responsibilities, still we revert to our default position in the family. Finish your soup dear, so we do, do you need a tissue, don't use your sleeve, have you been to the toilet, and so it goes on. Some of the family are quite loud and extrovert. Maybe I should say louder and more extrovert than me. So my position becomes quieter and more insignificant. I shrink back into my little box. On this I blame the events that follow.

"Finished your soup?"
"Have a sandwich dear. Have two".
"Take a plate, get a serviette too".
"Would you like tea or coffee?" Isn't it so much easier to say yes please? No need to explain that actually I don't drink tea or coffee and I don't want water because the toilet is not accessible and anyway I have a catheter thank you.
Easier than, "Go on you know you want to really."
"You must be starving."
"Someone get her a plate. Can I up cut it up for you?"
"Would you like the crusts off?" and so on and so forth.

"How are the children?"
"How is your husband?"
"Are you working now?"

I sound so rude, so ungrateful but I'm not. I love seeing my family, especially those who we don't see often. Family events like weddings and funerals are a great opportunity to get together and reminisce about when we were children and a chance for our children to discover more about where they came from. Every time we say we must get together more often but no one ever does.

At some point during the afternoon the cakes came out. I know I can't have cake, but I'm an addict. Telling me I can't have it and then waving it around under my nose is just not going to work. Among family, where I'll do as I'm told, at a funeral, where defences are weak. I took a cake.

It was a cherry bramwell, with snow white, glistening icing and a sweet, shiny, red cherry on top. I took a bite and savoured the sweetness of sugar with the succulent almondy filling and then it was gone. It was good. But the tray was still there. Carrot cake slice was next. Disappointing I thought. Carrot cake should always have icing made with cream cheese to compliment the sweetness and barely any walnuts to be found. I took another to be sure. The sweetness was divine.

There. A sum total of three cakes. Not too bad for me.

This morning my head is exploding. So far I have maxxed out my pharmaceutical dosage for all except tramadol and I'm saving that for bedtime.

Sugar is the enemy.

It's not fair.

H x

A Grilling!

2011-01-23T14:11:00.001Z

These twenty questions originally appeared over on Ciao! and are dated 2007. They were offered up for others to use (I hope that still stands) so I thought I'd fill them in for a laff!

1. What is your name and any nicknames?

My full name is Heather Julie Farley, people who know me well call me Hev or H and years ago a few elderly aunts mixed me up and call me Hazel.

2. Where do you live?
In the south-east of England, in the county of Surrey, in the borough of Elmbridge, recently named as the borough offering "the best quality of life in the UK", just outside the south-west borders of London. Whoa! That's as close as you're getting. I don't want no kooks knocking on my door.

3. How old are you?
Old enough to know better I should think. In my head I'm staying 27 forever but my birth certificate claims I'm 46. Feels more like 86 some days.

4. What is your worst habit?
Interrupting when other people are talking. It drives me mad when I do it so it must really grate on other people.

5. What is your best feature?
My boobs are not bad for my age and my stomach is still flattish although covered in stretch marks. My face is not too wrinkled although I have a few laughter lines around my eyes and my eyelids have drooped a bit. How did "What is your best feature?" turn into a personal slagging off?

6. Do you have children or want children?
Yes, I have four children between 14 and 23, all of whom I am immensely proud.

7. Favorite colour and why?
Green. It is the colour of my eyes (if you can see past the grey) and the great outdoors. Also, my hair has a bit of red in it and I have masses of freckles so green is a good colour for me to wear.

8. Who do you look up to?
For guidance? Counsel? My friends, my parents, my friends, my wider family, my friends. My bestest best friend is the most likely person I would turn to in a crisis, anytime day or night and know she'll be there for me if I need her. One among many though. I'm a lucky girl to have so many good friends.

9. What is your favorite pastime?
The majority of my free time is spent on my laptop surfing, blogging, tweeting, researching options, grocery shopping. I wouldn't say it was a favourite pastime though. More like a necessity.
Given more options I would much rather be outside in the fresh air but I'm kinda limited by my mobility.

10. What is your favorite season of the year and why?
Definitely Spring. All the fresh new green shoots, the sunshine after the rain and the smell of cut spring grass after the grey dullness of Winter. It reminds me how to feel alive and vibrant and energised.

11. Thing you hate most in people?
Hate is a very strong word and one that I choose not to over use. Aggression, both in men and women, can be really frightening and a lot of people, especially the young, don't know how aggressively they come across. Incompetence, in those who should be better prepared, is something I have little time for and also childish tutting or footstamping in adults is an ugly trait. Having experienced both in recent years from complete strangers I am quite happy to not acqaint myself with it again. And lying.

12. Things you like in people?
Openness, honesty and good conversational skills. Well one of us has to be able to keep the conversation flowing.

13. What would be your dream job?
My last job working in a secondary school was a challenge that I relished. The sense of achievement every day was only matched by the buzz of being in a successful lesson with youthful exuberance and ideas bouncing off the walls.
I always hoped to do something like gardening but . . . . .
However, I can't do that so . . . . maybe something desk oriented . . . .with numbers perhaps - one day.

14. What is the most important thing in your life?
My children. Emphatically. Without a shadow of a doubt.

15. What is your favorite joke?
I am completely useless at telling jokes. My OH says I have a poor sense of humour because I don't laugh at silly cartoons. Maybe he is right?
A while back my middle son told a joke at the dinner table that he made up. It was complete nonsense, something to do with a duck, a plane and a lorry called Dennis (they're all called Dennis because it's written on the front). It didn't make any sense but in the spirit of the moment we all fell about and laughed til we cried. For ages afterwards we only had to have a plane fly over or a Dennis lorry drive past and we were all helpless again.

16. Your most visited website ?
Facebook I should imagine. Although there are others that I visit daily, Facebook usually bubbles away in the background most of the day.

17. What is your favourite childhood toy?
My all time favourite if I have to have just one would be my bear Simon. I'm not exactly sure how old he is but I'd guess around forty years. He has many bald patches now but when he was new he was chesnut brown and beautifully shiny. I love him a lot.

18. Your star sign?
Aries

19. What is your favourite food?
That is hard. Food is yummy in so many different ways. Sweets and chocolate are the things that I crave the most often but they don't like me much. It always takes ages to choose what to eat from a restaurant menu because I like it all.

20. And your least favourite?
Hmmmm! Just as difficult for the same reasons. I wouldn't choose to eat a fry up but it has happened before. That is the least favourite but I would still eat it and enjoy it. I should be twenty stones.

My Last Word
Has that helped at all? It was interesting for me to fill in and harder than I thought it'd be. I felt I'd copped out with some of the questions by giving more than one answer and more than once I deleted what I'd written and tried again.

I hope you enjoyed reading about me.

See you soon.

H x

The Car

2011-01-22T19:29:00.000Z

Wow!

Sitting in my newly adapted car yesterday was absolutely mind-blowingly amazing. It won't be ready for a little while yet but . . . . wow!

The journey was no where near as traumatic as arranging the assistance, and finding out about the level of access available, had been. Why on earth they didn't just ring the station and ask when I suggested it I have no idea - but never mind. Water under the bridge. We taxied across London, eventually (not all London black cabs are the same size - who knew?), and easily made all the assisted connections, arriving as arranged in plenty of time.

Waiting outside the station we speculated about the vehicle they would send to collect us. Travelling in Percy has many advantages for me but one of the drawbacks is that I cannot, at present, use an ordinary car. Indeed many of the wheelchair acessible vehicles around do not have the headroom inside for my (apparently) tall power chair. Would it be a minibus (ordinary? no good), or a saloon taxi (no good), a Kangoo (not tall enough) or a Caddy . Surely they'd have read my paperwork and made suitable arrangements? They must have done this kind of thing a thousand times before. Hadn't they?

When the car turned up I nearly cried. There gleaming softly in the Winter sunlight was our actual new vehicle. Fresh from it's stage one adaptation and filthy from the motorway driving. I lovingly caressed the scratch-free paintwork as I glided up the purpose built ramp into my baby for the first time. Inside the aroma of expensive leather and new oil wafted through the beautifully crafted interior and, as I swallowed down the lump in my throat, the hydraulic ramp and automatic tailgate silently did it's thing.

The owner of the new garage talked us through the combinations of possible controls and outlined all the changes to the interior still to come, as he marked out the ideal positions of various gadgetry with masking tape and chalk. In awed wonderment I hope I nodded in the right places and didn't just sit in the driving position looking suitably gormless with my mouth hanging open. Middle son flitted around photographing anything and everything that looked like it could be even vaguely connected and various mechanics kindly guided him towards similar looking arrangements in other cars.

As I understand it (which could be wrong) just about everything, control wise, that is currently in the car, won't be. The steering wheel is going - to be changed for a formula one quick change version, the gear shift is going, the seat belts are changing, the only thing staying is the panel display and even that has some changes needed. Also there are some add-ons like an extra control panel with various buttons and some more quick release buttons on the passenger side too, in case I'm too tired to drive.

No matter how many curve balls we threw there was no hesitation, the answers were there and they knew their stuff. Many things we hadn't even thought of were already being catered for, and all the questions, I am sure, they have heard over and over before. Confidence in your subject is extremely reassuring to the anxious new driver/owner.

Time passed quickly and soon we were headed back to the station with heads spinning full of all the details of the day. So full that I wasn't concentrating on the road and when we braked a bit hard I fell forward onto the dashboard. Normally, as a passenger, I would tilt back my car seat to avoid just that happening but as a driver that is not possible and I needed a little help to get back properly into my chair. "Must mention getting you a body belt when I get back" the driver chuckled.

It has occured to me that this might actually be happening and not a dream at all.

So, as I said, an amazing day with plenty to think about and mull over in the next few days. The next time I see her, and she is most definitely a her, she will be done. Just a test drive to get through and then she'll be mine. The very thought makes me sick with anxiety nerves but I would never buck shy of a challenge.

Bring. It. On.

H x

Froze Nose

2011-01-20T14:46:00.000Z

It's flippin' freezing in this house today. Not just outside, indoors too!

Three days ago I had some difficulty getting out of bed. When we woke we had lights but none of the sockets were working and although I guessed it was something to do with the fuse box the boys were unable to reset the fuses. No power = no bed + no mattress = sore ass + bedbound. Eventually an electrician got in and identified the culprit as being an old extension lead so we binned it and, once he'd gone, I could get up as usual but four hours late.

Later that same day I was freezing. It was a cold frosty start to the day and the house just didn't seem to warm up all day. Some times the cold seems to push right into the core of your bones and that's how I was yesterday. We put the ovens on for dinner longer than necessary, made hot drinks and went to bed good and early. Nothing seemed to help.

Not until OH came home that is. He turned the thermostat up full, felt the radiators, checked the timer was set right, put the kettle on again. And ran the hot tap.

"That's funny," he said, "there's no hot water either."

So this morning, after getting up in the cold again, I rang the emergency plumbers and it looks like the boiler needs a new fan. The old one had gone kaput and blown all the fuses at the same time. That means;

There was probably nothing wrong with the extension lead we threw away.
We've had no heating or hot water for three days AND DIDN'T KNOW
The electrician doesn't know what he's talking about.
We still don't have heating. . .
. . . or hot water.

Now I have two blankets on, a hat, gloves and I still have cold extremities and it could be another twenty-four hours before the part comes to fix it.

But I'm still excited because tomorrow is THE DAY I SEE MY CAR!!!!!

It's better than Christmas. Can't wait!

H x

A Problem Shared

2011-01-19T13:54:00.000Z

I'm crying again.

It took me quite by surprise.

I'm trying to work out how to get to Hemel Hempstead with Percy, and that means going by train. It's a journey I'm looking forward to, that will take me to the workshop where my new car is being adapted. Travelling by train doesn't worry me unduly. I've done it hundreds of times before, though not always with great success. That is kind of part of the great adventure. Not quite knowing whether it will work out but in the back of my mind knowing that one way or another it will.

But not this time apparently. This time it's just too important to not know.

The 'help line' is not being terribly helpful.

SouthWest Trains will only book my access up to Waterloo as I will have to break the journey there to travel across town by taxi. There are no other options that I can find. That's fine. I suspected that would be the case. Underground services are pretty thin on the ground where wheelchairs are concerned. They also won't book the second part of the journey because they are concerned about the quality of access at the destination.

I don't mind that they. I'd rather they told me if it was a problem than risked a dodgy transfer or promised access where there was none.

The second part of the journey (third if you count the taxi) will be with London Midland who also have an assisted travel helpline. They think that access is not a problem. Their representative has quite happily booked assisted travel for me from Euston to Hemel and back with no question at all. Even my insistence that the access be double checked met with a confident 'no problem it's definitely fine'. At the end of the call a hastily added ' they'll get you off the platform somehow' did nothing to reassure me that all would be well.

Online, Hemel Hempstead Station facilities are vague. They have disabled parking, access to ticket office, access to toilets, access to subway under station and access to coffee shop - but no step free access to platforms! So, if you, like me, are in a wheelchair, you can park, pay for tickets and have a wee and a coffee but not travel on the train! Useful - NOT!

This morning, after worrying all day yesterday, I decided to make a few more enquiries. London Midland, I have discovered, have a whole new level of unhelpfulness. Their information about individual station's access comes from the same website I'm looking at, verbatum. In answer to my rising levels of anxiety and frustration I am referred back to the same Assisted Travel Helpline that assured me there was no problem and 'they would get me off the platform somehow'. In a twenty stone chair and with an average 28 steps (it turns out) depending on the platform - I think NOT.

South West Trains to the rescue.

They have booked the journey for me (I haven't bothered to unbook with Midland - I can't face it) and allowed an hour to taxi across town. With the help of the company I'm visiting it has been agreed that I'll get off at Watford Junction instead and they will pick me up from there.

So now the problem is solved pretty much. So why, when I finally get off the phone am I sobbing?

Wtf?

H x

One Month Before Heartbreak - Take Two

2011-01-16T18:26:00.000Z

This weekend, 14th - 16th Jan 2011 is dedicated to the Broken of Britain website who are hosting a blogswarm over this weekend called One Month Before Heartbreak.

In one month's time the governments consultation period for the proposed changes to Disability Living Allowance will end and, I presume, decisions will be made about the future form of this benefit. Changes like forcing all recipients to undergo medicals and removing the mobility component for people living in residential care. The aim of this blogswarm is to raise awareness of the difficulties the changes currently being proposed could bring.

A few days ago I wrote a post entitled New Improved DLA which was intended to be my contribution but things change. It was written without much research or forethought and having just read it back, it in no way reflects my experiences with the benefits system so far. I was trying hard to stay positive.

I have spent some time reading a few of the posts that have appeared and have completely missed the point of the exercise. I am sorry. I hope that I have not damaged the cause in any way and by way of recompense.

Here is my story.

Where to start. Do I write from the beginning of my experiences with disability? Or from where my own disability began?

Really there are two separate stories here. The parent carer and the person with a disability but maybe we can do both. So, from the top.

Twenty three years ago when my oldest son was born I had not heard of DLA. Disability was another planet. Another race entirely. For more than ten years afterwards we struggled to understand his behaviour. No one ever suggested he had a disability, even when my son was excluded from his third nursery. We were sent by the so-called experts to parenting classes, family therapy, dieticians and homeopaths all the while believing we were somehow at fault. Shunned by other shocked parents and frequently discussed in loud voices in the playground, we fought the education system for ten years to have his difficulties recognised.

Only once my third child was born with his more obvious behavioural, physical and learning difficulties was it suggested that there could be some link with Autism. Then the battle to get funds began in earnest. It took another five years to convince the benefits agency that it was possible to have a disability and not know it. Five years of being turned away, appealing, reviewing, re-applying again. All the while attending hospitals, urologists, phsychologists, physiotherapists, dieticians, and trying to keep a family life going for ALL of us. Even once the award was made it was overturned on alternate years and we would be forced to once again reapply for both boys. At the same time battling for appropriate schooling for both boys, appropriate accommodation, transport and desperately hanging on to the little respite we had, as well as running a family home, walking the dog and working part-time.

Eventually, in 1995, I had a partial nervous breakdown and THEN it got easier. Respite became available, diagnosis' were suddenly clear, social services showed up, schools had places after all.

DLA however was always a trial. In the last twenty or so years I have filled in those damned forms more than twenty times. And been turned down sixteen of those. Now that the boys are both over 18 they have their own separate support to fill the forms in and last time my eldest decided he would rather go without than face the fight again. He is in a much better place and works full time, he'll be fine.

Then in 2001 I had a mini-stroke. Doctors thought it was bought on by stress but I believe it was actually the lifting of the huge pressure I'd been under that somehow bought it on. Things were becoming a little easier as the children got older and I'd changed jobs to a less pressured environment. Life got back to normal (for us) and another job change bought me back into education in a job that I loved. My eldest got into university with an amazing points score and life was good. Just the right time for my (our) world to go tits up.

In 2007 I had a much bigger stroke and then another. Social Services, I have to say, stepped in very quickly. There was no way the children could be left unattended and neither could my OH stop working for an indefinite amount of time. Incapacity Benefit soon became my normal state of affairs but it still took me a full year to get DLA for myself despite using a wheelchair/powerchair full time and needing personal care on a regular basis and eventually (after protest) getting the highest level of award for lifetime.

Maybe I have been lucky. I can understand people who know me thinking otherwise but I still see my glass as half-full. My children are all amazing individuals who are now mostly capable of (almost) independent living at some point. I choose to think that no matter what changes the government propose it will all come out all right in the end. One way or another. Perhaps I am deluded or living in cloud cuckoo land but that is preferable to me to worrying myself sick over something that I feel is going to happen anyway in one form or another eventually.

I do hope that the pressure being brought to bear over the issue of changes to DLA make a difference in the long run. Not that all change is bad per se but perhaps the government could do with listening more closely to the people who will be most affected by these changes and making it more easy instead of harder.

H x

Yesterday News

2011-01-15T15:21:00.000Z

There were four loads of washing waiting for me when I got up this morning and the house looked trashed. It's partly what I expected after being out at the pub yesterday evening. The boys were home alone with no explicit instructions on tidying up or clearing away and that's what you get.

For teenagers they are good. With written instructions the jobs get done, no wingeing, no argument, but without . . . no chance!

So it has taken me a while to get staight again but now the fourth load is in the machine and I have managed to hide for long enough that the OH has started the mammoth ironing pile. So I'm staying hidden.

Yesterday, after a dentist check-up that I passed with flying colours, I had lunch out. Near the dentists there is a nice cafe that we have used before, and a really nice (girly) gift shop. The food is typical cafe stuff - sausage, egg, beans, chips etc in any combination - but it's clean, the service is great, the prices are good and I know I can access a table easily. It was nice.

Spending time with my OH is something we both try hard to fit into our schedules. It's important to us and we need it to keep our relationship going. Sometimes, during particularly rocky patches, we have sat a while in silence but by the time we are ready to come home a compromise has always been reached. At the moment it is even more important that we re-establish new connections as we are back on the way up.

Also yesterday afternoon a call came from Motability. There has been a very important turn of events in the car saga. Following the call at Xmas the car has been moved a week early and my attendance is now required at Hemel Hempstead. How exciting! So, next Friday I am off on my rail travels again, accompanied by middle son, to see if I can get there by train. This time I think I will have to cross London by taxi as Euston Station is not on a tube line that I can access. I'm sure it will be fine. Each time I travel it gets a little easier psychologically. Train travel is, from my point of view, infinitely easier than transferring in and out of a car . . . but not for much longer.

Can it be possibly true that this thing is actually going to happen?

Pictures to follow next week.

H x

Clean and Clear

2011-01-13T09:00:00.000Z

It's so not fair is it.

I was so-o good over Christmas. The only time I ate anything sweet was the Lemon Meringue Pie that middle son made and it was de-licious. No chocolate passed my lips, no sweeties off the tree, no mince pies or christmas cake. And it was easy (well relatively).

As long as I keep off the sugar it has no hold over me. I have no desperate cravings for it as long as it is not in my system.

I had no sugar for around four weeks before that too so I was on a roll. Boxing Day came and went, so good. The New Year passed me by, no sugar.

Then . . .

On the 3rd . . .

. . .I got a bit low and I let my guard down. The Quality Street called out to me, the large Baileys gift I'd recieved was chilled and ready. How could I resist? Chocolate digestives, hand-made shortbread, chocolate eclairs, candy canes on the tree. I binged and ate the lot.

One day, that's all it took.

I'm so disgusted with myself.

Why can't I be like 'normal' people and just eat one? Oh no not me, I have to eat everything in sight. If the tablecloth was sticky I probably would have eaten that too.

Anyway, I've paid the price. Two days later the headache came in with a vengence. Now I had a choice. I could carry on eating sugar and chocolate etc and give in to the craving which would delay the withdrawal but make me totally miserable to live with.

Or

Suffer for a few days then start again afresh. Breaking the cycle is no easy option believe me. But I did it and this morning my head is clear again for the first time in over a week.

Addiction has a powerful pull but I can do this. I can forgive myself for not being perfect and start again.

One day at a time.

H x

All Change!

2011-01-08T11:52:00.000Z

My house in a situation of flux this weekend. The holidays are firmly over.

Youngest is back to school and fast approaching his first GCSE exam next week, not that you could tell by looking. I'm sure there is a flurry of activity in his head somewhere, it's just that there's nothing on paper yet. Like a swan, paddling furiously under the water and gliding smoothly along on the top. At least I hope that is the case!

He's furious at me for making him go to bed at a reasonable time, get up and go to school (even though I woke after he did). So furious that he isn't speaking to me so really I'm kinda guessing that that is why.

Middle son, who didn't want to go back either as the college's first day back was his last day of the week, made a right old fuss when I suggested skipping college til after the weekend. You'll get arrested he screamed at me as he slammed out the door. But not before blaming me for taking or moving his wallet, coat, phone, college pass etc. As it turned out he needn't have bothered because after two hours they sent him home anyway. It takes him longer than that to travel there. Ha!

Prodigal Daughter has trotted off back to uni yesterday morning leaving a trail of debris in her wake. After us agreeing to post on the few pieces that wouldn't fit in her case, she left a mountain the size of a small car. Items she didn't want to carry included her winter coat, heavy study books, a slanket and sundry dvds, as well as the washing she couldn't be bothered to separate. Am I being a bit harsh? It becomes a habit after a while, ingrained from years of being ignored. I did enjoy having her home for Christmas this time but she said three weeks for her was plenty and looked forward to some quiet study time. I know what she means it can get noisy with everyone at home.

Eldest Son said he was glad to leave at Christmas after four days. In his own inimitable style he declared that Christmas was barely tolerable and he was looking forward to a soft bed and good food. Thanks for that mate!

He knew he'd upset me (there was no doubt) and rang two days later to apologise. Not sorry for what he'd said though, just that I was upset. However he still came back for New Years Eve so he couldn't have been that uncomfortable. His social skills have definitely slipped. Living on his own means that there is no one to remind him of his faux pas'. What can I do? He is who he is. At twenty-three he can do or be whatever he pleases. He's a good looking man til he opens his mouth and tells you you're probably beautiful on the inside.

Oh yeah and I'm back on antibiotics for the first time this year.

So there we are. Back down to four at home, trying to get the place straight again and still awaiting news of the house and car.

Change, sigh! It'll be the death of me.

H x

New Improved DLA

2011-01-06T12:52:00.002Z

This morning I've had an email from a group representing disabled people with a request to fill in a survey about Disability Living Allowance. They have asked that the link be passed on and anyone who has an interest can fill it in. Just click here.

It appears the government, in their inestemable wisdom, have decided to review the current system (a picture pops into my head of Ron Moody as Fagin, rubbing his greedy, grubby little hands together). There have been some rumblings on the jungle drums about this subject but I had no idea where to look for unbiased information that was easy to digest. Government pages are notoriously difficult to understand (for me anyway) and full of jargon and long words. Definitely not for bedtime reading.

The survey was lo-ong, detailed and in no way anonymous. But I did it and it got me thinking. And the thinking goes like this.

The government are doing this to save money (no brainer) and they need to save money because the last lot cocked up. My feeling is that there probably are people out there dodging the system. Exaggerating, or lying basically, to get extra money that isn't theirs to have. Banking on an overstretched and flawed system not having the resources to catch them out. Maybe these people were ill once and got better or maybe they are playing on an injury long since healed. Does that make them mentally ill? Taking money under false pretences and persuading themselves that that is ok? Doesn't that entitle them to some money anyways? There should be a smaller drop in income to be had to ease out and back to work, a transition phase perhaps. More different levels of payment to encourage people to own up when improvements are made and a way to make it easier for your money to go up if the situation deteriorates. Flexibility, or a different catagory, to enable people with fluctuating levels of ability to dip in and out (how could you prove this?). And wouldn't it be great if every other page of the application said 'What can you do in this situation' instead of focussing on the negative the whole time.

Yes, in that line of thinking changes do need to be made. The system has to have more different levels of payment, be assessed on ability not just dis-ability and be able to adapt much more quickly to keep up with the changes in peoples lives. Does that mean trusting that the general public will be honest? Or asking overstretched doctors to provide updates in certain cases? Or more likely, and cynically, a bit of both.

Being as I have no idea how the current system works beyond filling in the forms I don't feel qualified to comment, just to say that it is a shame that the dishonesty suspected of a few will always spoil the trust between system and the needs of the many adding inconvenience and suspicion on both sides.

Fiddling the system probably applies to all benefits in one way or another but DLA is different. DLA should be the one benefit that you are either entitled to or you're not. Maybe I'm being way too simplistic but how can there be doubt as to whether a person is disabled? The clue is in the title. And why would a person wish to be labelled so if that is not the case? That's beyond my comprehension!

So to sum up. I don't know the details of what the government are proposing, and I don't know exactly what the answer is but I do think there is a need for change and that not all change is bad.

There I've said it.

H x

Water, Water Everywhere . . .

2011-01-05T18:03:00.000Z

What a start to the New Year! This year holds such high standards of promise but after such a dismal few days I've come banging back down to reality with a bump. Pah!

On New Years Eve the cold tap in the bathroom got stuck (so technically last year really). Wide open and gushing water the only option was to turn off the water supply at the stopcock. As we are tenants we had the option of ringing the landlord (who happens to be a housing trust) for an emergency repair and got on the phone sharpish. This was around 10am.

After lunch I was the only one left in the house and, as the dishwasher had had to be pulled out to access the stopcock, was trapped in the dining room, a fact that only occured to me after they'd all left for the afternoon. So I rang again to find out if they would be much longer. I made sure they knew my circumstances and was assured that I was on the urgent list but that they were extremely busy.

At four thirty I rang again. The guy manning the emergency line said we were all emergencies and was very cool about my lack of facilities. I made it clear again. I'm in a wheelchair, have four children (all home for new years eve), can't flush the loo, use the dishwasher, do any laundry (an every day necessity with six of us at home), use the shower etc. No water for tea, coffee, or drinking of any kind (had sent out to the shops for bottles but they didn't need to know that). But was again assured that someone would definitely call that day. By this time I have my doubts. It's New Years Eve and we reckoned they all be at the pub or on their way there by then.

My carers came and could not empty the commode, could not help me to wash and in the end put me to bed grubby. Prodigal Daughter went off to her New Years Parties unwashed and lank haired and disgruntled at us for the lack of facilities at this hotel. The boys all used the toilet, in a way that only men can do, and eventually we were forced to turn on the water briefly so that the flush could be used. Then turned it off again.

New Years Day I was up good and early - funny enough so was the guy on the emergency repairs line. It took me four tries to wake him and a good five minutes for him to slow me down enough for him to get a word in. By lunchtime it was all fixed. The plumber had been the same one on call all day the day before and hadn't had a single call out. It's enough to make me spit feathers. Honestly!

Then yesterday, a call came to say that my aunt had passed away after a short illness. I had known she was in hospital but had not been able to visit her myself and I think she preferred it like that. She always struck me as a very private person and although she had often been invited, and didn't live far away, had never come to any of our family gatherings. She was the youngest sister of my mother's family and out of the original fourteen siblings there are now only three (or four if you count the one who ran away to America that no one knows is alive or not).

It has hit the remaining three hard, two passed away last year and two the year before. They must be thinking, somewhere amongst the grief of loss, who is next? I know I am.

And so life goes on . . . . .

H x

How To Avoid Indiscretions

2011-01-02T13:22:00.000Z

Voicing my emotions is a bit of a stumbling block for me (understatement of the year). Writing them down seems easier! Why is that? I would have thought that committing something in writing makes it far more permanent and harder to retract. Surely putting it out there for the world to see should be harder, shouldn't it?

For whatever reason, in my head there are a swirl of conflicting emotions this morning that are begging to be written down.

Maybe it is easier because I get an opportunity to edit, that in live conversation just does not apply. Or because I get to choose exactly what to share and not trusting to discretion of the other person. I can have that indiscrete chat with my blog page without censorship then just not post or delete those parts that I deem a step too far. It's easier to go over and de-personalise. Remove names, blur details, de-exaggerate perhaps, change adjectives, alter grammer. Things I can't do in the spur of a conversation.

I blame it on my processing speed. And a touch of tourettes! Thinking and speaking in the same moment has never been a strong point. The amount of times I have jumped in with both elephant feet and spoiled the surprise/excuse/alibi is more than I can count. Fortunately (or not depending on your side of the fence) it is usually myself I am dropping in it more often than not. Ask me a direct question to my face and you will get a direct answer (not always the one you want either), and in the case of a huge secret, even with both hands clamped over my mouth it's hard to keep it in. Thank goodness my memory is so pants that I forget almost everything I'm told before I can blurt it out.

Anyway, I digress. My blog this morning is just a quick one as the family believe I am grocery shopping and are becoming suspicious of the tap tap tapping of the keys.

Emotions . . . what was it that I needed to write so desperately? Hmm! Something was bugging me! Hmmmmmm?

No, no idea what it was that bothered me so much.

Oh well! Back to the shopping.

H x

The Year of Promise

2010-12-31T15:44:00.001Z

New Years Eve.

Do I look back at the year that's gone? Or ahead at the promise of things yet to come?

I know which way someone I know will be facing. Moaning ol' git that he's become (in the nicest possible way). Nothing yet to complain about in the future. No gripe to be had with the unknown, no grudge to hold. So looking back is his forte, his guilty pleasure. Looking back and holding on to every little wrongdoing, every mistake made against him, every fault that rankles and repeatedly squeezing every little drop of irritation out of it. Sad . . ! Each to their own I guess.

Me? Today I'm looking ahead (tomorrow that could change). At the shining promise of the New Year yet to come.

The preview for next year looks a bit like this.

Already January is hotting up. There are two trips to the theatre in the offing, free tickets to the panto, which this year is Snow White and the Seven Dwarfs, and we bought Middle Son two tickets for Hairspray at the same theatre for Christmas. Two girls nights out, and a meal with friends (two if you include New Years Day), two hosp and a dentist appt.

Later on in the month we maybe moving into alternative accommodation for the start of the long awaited house adaptation. Either Jan or Feb any way. Nothing is definite just yet but things are creeping ever forward towards the day. The kitchen design is pretty much decided. Range, accessories, units, style, tiles, flooring, and we have a floor plan too now. The bathroom tiles are decided (but not yet sourced) as is the spec for the lighting and electrics. See, things are coming along.

And, although the two moving days will inevitably be traumatic, I am quite looking forward to the final chapter. There's nothing quite like flicking through a few catalogues to get my juices flowing. Shopping mmmm!

Then in late March I am assured that the new car will arrive. On Christmas Eve, one of my favourite gifts was a phone call from Motability. My contact was very pleased to be able to tell me that all is progressing on time as predicted and the car will go to it's second phase on January 17th. All the hydraulics and the bodywork will be done by then and then it's time for controls, electrics and electronics. This will mean me going to see it for the first time for measurements and fittings sometime late January/early February ish.

And that is all before Easter. Phew!
See, exciting times ahead. Who on earth would want to look back?

Wishing you all a Happy, Exciting, Healthy, Wealthy, New Year. Cheers!

H x