Urology

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

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

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

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

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

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!

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