Friday, January 20, 2006

Whale in London

There's a whale in London. In the River Thames. If you go to the BBC's web site you can watch live coverage of a bit of grey blubber amidst the greenish choppy water. Woo.

Someone from the Marine Connection (a whale and dolphin protection charity), said "The last thing we want to do is stress the animal out."

What are the chances of that happening, then? Its already got it's own web coverage, a host of boats carrying pursuing 'concerned' whale conservation people, as well as the rest of the media too bored or tipsy on a Friday afternoon to cover any serious news - and I just betcha that someone, somewhere in our capital is busy making up some crappy t-shirts for the tourists.

Meanwhile in Fangworld, Mr Fang has badly broken and dislocated his little toe, and is trying to out-crip me with his cries of pain, general limping, and requests for painkillers. To his credit, he's gone into work today because they are busy, but has been signed off for two weeks and will be competing with me for the sofa and the telly remote until the end of the month.

I might have known this was coming ever since he got pissed on Christmas Day and took himself off to the kitchen (leaving me with my parents and Grandpa in the living room watching 'Singin' In The Rain, at top volume since Grandpa's hearing aids were faulty...) to try and do wheelies in my wheelchair.

Looks like the game's up. Take me to the river.

Monday, January 16, 2006

Farewell, My Spoon

I am learning to cook, properly, that is, with raw ingredients instead of opening packets and tins. Now I can get my wheelchair in the kitchen, experiments are occuring that may mean I am able to sometime cook Mr Fang's dinner when he comes home. Tonight we're having parmesan rissotto followed by creme brulee. I can't decide whether to make the brulee with Baileys or bananas, but such are the burdensome decisions of a cook.

Happily my newly found enthusiasm for cooking has been precluded by buying things - a few books to get me started, namely Hugh Fearnly Whittingstall's Meat Cookbook, Gary Rhode's Keeping It Simple, and that scary Scots lady Gillian McKeith's 'You Are What You Eat' cookbook. (I must be at least 60% biscuit, then...).

Don't ever watch her show, though, unless you get a secret thrill by seeing fat people being told they are going to kill themselves with junk food by a small angry blonde woman armed with a tub full of rancid poo. It's enough to put you off nutritionists for life. The book talks a bit more sense, although she has come under critcism in the press for expecting people to source too many bizarre foods and go shopping too often. I don't care about that stuff, though. I am a novelty dieter, so all this specific blabber about rare seaweeds and sprouting sprouts just means more playtime to me.

Even better, my favourite new toy is a small cook's blowtorch. Nobody would buy me one for Christmas, so I bought one myself with my birthday money as soon as I could reach the shops. Mr Fang has already confiscated it, and it is currently sitting on a high shelf he thinks I cannot reach. Unfortunately he has forgotten my 'handy grabber' gadget from the occupational therapist, with which I shall be able to rescue it with ease.

I'm sure will all turn out well, and he will relent after the fabulous creme brulee I will be serving tonight as the surprise dessert - as long as I don't burn down the kitchen first. As if.

Friday, January 13, 2006

New (Average) Feet! Part 2

The most painless appointments I’ve ever had are the ones with the Orthotic department – the ones who look after your feet. Lax connective tissue means I have a perfectly decent-looking foot arch when my feet are off the ground, but nothing to speak of when I put weight on my feet. As the bone structure in my legs is a tad, um, customised, this gives me all sorts of falling-over and potential injury problems. Our local department is run by a dour and homesick Scottish gentleman, who nonetheless is a pleasure to deal with as his focus is actually making things better for you rather than ‘observing protocol’ or ‘watching budgets’.

Orthotics is tucked away beyond various twists and turns of characterless hospital corridors like some long lost secret island. You only find directions to it if you look in very specific and varying places on the walls (and on one occasion, the floor) for the small, eclectic signs. After the fifth or sixth turn, the general buzz of hospital noise abates, and you don’t see anybody anymore.

As I wheeled along these silent corridors, I came upon a table placed in the middle of the floor that I could not negotiate. Beyond this was the final corner that would lead me to the reception area. Unfortunately the table was so placed as to alert you to a large, square hole in the floor, possibly access to some sort of basement area, with torchlight streaming upwards from it in such a manner than it reminded me of some kind of hellish pit. I could go no further and there was nobody about.

‘Hello…?’ I called down the hole, a little cautiously, lest a devil in the shape of a maintenance person should rise up from it and drag me down into it. They don’t give them any people skills training, you know. My enquiry was met with silence. ‘Probably busy devouring some poor patient’, I thought, turning around just to check one wasn’t sneaking up on me from behind. I tried another, bolder sounding hello, followed by an equally loud curse seeing as there was no one about. ‘Bugger, bugger, bugger, how am I supposed to get past this?’ I asked loudly, to nobody in particular. The pit remained silent. ‘What a stupid place for a hole’, I continued, even bolder still. ‘Right in the middle of the bloody floor getting in the way…’, I then gave way to some heavy sighing and rolling of eyeballs, in the hope such displeasure could somehow magick someone to my aid. I turned around to check my back was clear once again, and there he was, my dour Scottish orthoticist, standing behind me staring at the hole with a similarly grim look.

‘We need another room,’ he said, and disappeared back the way I had come, stopping briefly at the end of the corridor to summon me to follow before disappearing down another at the speed of a white rabbit down a hole. I followed as best I could, regretting there wasn’t time to tie a piece of string to the table leg so I could get back to somewhere I knew if I lost him.

After several corridors, we arrived in what looked like a GP’s reception area with posters about flu jabs and asthma clinics and magazines – but completely empty. In the middle of this room was a cubicle not unlike the ones you get at social security offices – heavily fortified to protect the staff from violent attacks. The cubicle was filled with women talking loudly about Celebrity Big Brother.

‘Oh good God,’ muttered the Orthoticist under his breath, before advancing on the cubicle and requesting an unoccupied room due to the fact his disabled patient couldn’t negotiate a hole in the floor to get to his department, and he needed to just see if the insoles he’d made me would fit in my shoes. ‘We’ll be two minutes’ he said to the horrified ladies, who looked as if he’d just asked if would be ok for us to pee on their rug. ‘We can’t let you use a doctors room,’ they chorused ‘the doctors don’t like anybody using their rooms.’

‘Ok thanks’, he replied, completely ignoring their warnings ‘We’ll be in that one over there for two minutes’, causing them all to take off into a rather satisfying flap. Before they could fly at us like demonic monkeys out of a gilded cage, we hastily picked a door and opened it, whereupon he briefly fell over a small storage heater. Before you could say ‘Fly, my pretty ones’, a woman was at my back, still chanting ‘The doctors don’t like anybody using their rooms!’

Seeing as the storage heater and now my wheelchair prevented her from getting any further into the room, we simply ignored her cries and got ready to fit the insoles. ‘If some people had brains they’d be dangerous,’ the Orthoticist muttered to no one in particular, whilst I just grinned and gave her what I hoped was a friendly wave. She repeated herself one more time before going forlornly back to the cubicle. A door slammed.

Just as he predicted, our appointment lasted all of two minutes as he fitted the insoles into my shoes. They fitted perfectly first time. My knee alignment feels somewhat like I think other people’s knee alignment might feel. It’s a strangely, stable sort of normalness feeling. The insoles are a pretty blue colour too.

I’d like to tell you of the dangerous adventures I had after leaving the room, back past the cubicle of celebrity-obsessed GP surgery guard-women, finding my way through the strangely quiet yet menacing corridors, and heroic avoidance of dangerous holes in the floor, but I would be lying.

New (Average) Feet! Part 1

The hospital loves me. I went to another department yesterday for something completely different. Nothing particularly sinister, though. The main reason I am having all these visits recently is, after moving house and getting a full diagnosis last year, that they are ‘aware’ of lots of symptoms I have that may need monitoring, investigating, and ‘little adjustments’ in the bracing, pill popping, hormone ingesting (there, that’s got you thinking…) department.

The most painful of these is what is happening in various internal regions of my person. As well as connective tissue wearing out around my joints, internally, things are also taking a bashing, not helped in the least by an overall tendency to bleed more easily that the average person. This has led, lately, to possibly alarming symptoms that once investigated, turned out to be benign. Again.

Typically, people in the connective tissue disorder ballpark have all sorts of symptoms of, oh, stuff and things, most of them also seen in your more standard issue human body. It may be one of the reasons we fail so spectacularly to get diagnosed – to a doctor, the carpal tunnel system symptoms you are manifesting usually do not mean you are any more ‘special’ (eek!) or unusual than the next person – it’s just that someone without fragile connective tissue might get them after a long spell typing without taking the recommended breaks, whilst you might get them after chopping a few carrots.

This has happened to me.

The trick for people in the helping professions is to recognise something more might be amiss, based on the equation of effort-versus-effect, and this is sometimes difficult to do without wondering if the person before you is not simply a frenzied moron who likes to exaggerate everything.

When you can’t even chop a carrot for your dinner without the fear of not being able to brush your teeth the next morning, or have carrots for dinner two days in a row, you know you’re different – yet the actual symptom isn’t any different from that of an average person. Yet the manifestation of the symptom itself isn’t life threatening, and like everyone else’s, will subside with the proper treatment and rest. Consequently, your attempts to convince the doctors of this small but vital difference in your individual circumstances may sound like some kind of hysterical paranoia they cannot understand.

When you like carrots, but the consequences of your chopping them up for dinner every night could, in the long run, lead to irreversible degenerative changes in your wrist joints, it’s time to be alert, checked up, dosed up, and monitored. Or have a carer chop them, of course, so that your wrists are preserved and you can wipe your arse yourself in old age, but that means diagnosis, and proof, and other such tiresomely bureaucratic things.

It’s a shame that the human race has a general tendency to freeloading – if it didn’t, one might be able to say ‘I have (insert applicable symptom)’ and simply be offered the requisite support without having to spend years chasing other human beings with the sufficient gravitas to prove that the unhappy individual did, indeed, require such support several years before it actually arrives.

So, you see, once you have that magical piece of paper from the specialist, it may suggest to the doctors providing your care that some more serious consequence might be afoot. In short, impending arthritis, a rupture, a collapse of a vital organ, or a piece of body being in the wrong place. Whilst they have no compunctions about telling you you’re a hypochondriac and to bugger off when they assume you are a normal member of the human race, the piece of paper saying you are not makes all the difference.

It is, in fact, refreshing to have moved house in the middle of all this referral business and not to have to go back to the particularly unpleasant ones with an ‘I told you so’ look upon my face. One might think the opportunity to get satisfaction in this way would be something to be wished for, but quite honestly, now it’s had a year to sink in, it would be just too depressing.

Did I ever say I’m not bitter?

This was just going to be a short blog entry about getting new pair of insoles from the orthotic department...

Wednesday, January 11, 2006

A Happy Doctor

I am gobsmacked. I've had a lot of hospital-ly to-ing and fro-ing happening at the moment, and have just got back from an (NHS) appointment where the doctor was:

a) Cheerful and jovial
b) Let me get a word in edgeways
c) Discussed some 'was if's' and 'maybes' without that kind of medical paranonia that patients may sue or take it as gospel
d) Offered to send me a copy of the consultation letter without my asking (Hoarding consulatation letters is useful because they help when applying for stuff)

and lastly

5) Is retiring in three months time


Maybe the secret is to catch them in some kind of golden time when they know their escape is imminent. He gleefully remarked that for nearly four years the hospital management has known they were going to lose several top consultants around the same time, but despite urging from these specialists, had set up no contigency plans.

'So I gave them as little notice as possible...'

Goodness gracious me.

Sunday, January 08, 2006

Fix It Yourself



A reckless desire overtook me recently - to take my manual wheelchair apart. This is usually the job of the wheelchair service, but I sense a general lack of enthusiasm from them to keep it well maintained. If something major goes wrong I might get a new part, but for general maintenance, as long as it rolls forward a bit then no other investigations are attempted. I've had it for 6 years now and it's looking a little battered, and it seems to be more and more difficult to use. So far I've blamed this solely on my degenerative wrist joints rather than poor general maintenance. The maintenance guy, lets call him Gavin (a huge, scary, bow-tie wearing 'comedian' of a chap who when he's not working takes crip kids to Lourdes for 'cures' - in a bus I suspect, has rainbows painted on it), does come out once in a while and tighten a nut or two, but each time he's told me nothing major was wrong. He always tells me on pain of death not to attempt any maintenance myself. If you don't look convinced enough, he will tell you tales of poor crips who have broken this vow and the 'orrible penalties they suffered. Our sort aren't meant for initiative, and god forbid we'd be right in saying the equipment we use every day isn't performing the way it used to. And by the way, have I ever been to Lourdes? Consequently, I've been blaming my poor old wrists for all the trouble I've had and desperately seeking some other way to get the chair looked at.

Suddenly, last week, desperation took hold and I went to bed early with the instruction manual in a determined mood to 'fix' the dratted thing once and for all the next day. I figured that reading something technical late at night might mean the complicated bits stuck in my mind the for next day. I reasoned that this was the way I used to revise German vocabulary at school – and some of it used to sink in. I'm not a technical person really. If left to my usual creative methods, I might arrange nuts and bolts to look aesthetically pleasing, but not actually enable the chair to work. Anyway. I got down to some serious study figuring a little technical insight might remedy any gaps in my un-technical outlook.

The castor assembly seemed an easy first thing to experiment with. They've not been performing well, despite the wheelchair service guy declaring the rubber wasn't worn enough for new ones to be ordered. If you spun them round when the chair was off the ground, they only went round half a turn, which I was sure was wrong - when I got the chair they moved easily and took at least two full rotations before they stopped.

Early next morning, after peering at the castors, it became apparent that old matted-up hair was playing a part. Hair appeared to be wrapped tightly round the castors, an offence for which I can no longer blame my dearly departed German Shepherd dog, Jacob. It’s all mine. Confident of getting it right, I set to work getting them off the, um, spindle, and was greeted by a horrific sight.

As I said, I've had the chair 6 years. In that time, my hair has been, in chronological order, bright red, blonde, a chocolaty brown with ill-judged white blonde slices, and finally, auburn. As I began to strip hair off the spindle, it became more and more apparent that hair build-up had been impeding the castors movement, layer by layer, year by year, since the day of delivery. By the time I reached the red hair layer (circa 1999), the air was blue with my cursing. How can you run a repair service and not know this kind of thing happens?! Or not care to look when some poor crip’s hands are getting sore from heaving hair-raddled castors around town? After a bit of oiling for good measure, I put the whole thing back together and hey presto! Spin city! Result.

This made me more foolishly confident. I took a quick peek at the back wheel axle assembly. In it's introduction, the manual said the chair would run more easily if the user's weight was placed over the back wheels but this had to be judged carefully as it would make the chair more liable to tip backwards. ‘So what’, I thought. ‘The position on this chair was first set by people who don't even know how to service castors! Bugger it all, I'm gonna set 'em to a speedier position. It doesn't look too difficult. Some of the instructions that aren't in Swedish are in English...’

There are several different settings on my chair, a swedish made Etac Elite. I got to work carefully, noting a little too late the pictures featuring the order of the axle nuts went in were rather blotchy-looking so it was difficult to see what went where. "So what," I thought again, making my first big mistake – if it was complicated, they'd make the instructions bigger and clearer - wouldn't they?

I am my own worst enemy at these times.

Taking it apart was easy. Mark this. It is the signal that things are going too well. All the little nuts slid off the bar smoothly, into a little unordered heap on the floor. Somewhere far, far, away, a warning bell tolled, but I was too busy working out which setting would give me the leanest, meanest, fastest speed to pay it any heed. Undoing the other side, I identified the correct setting to turn me into the next Tanni Grey-Thompson, and eager to hasten new victories, picked up the first of the nuts to fix them back onto the bar. It was at this point I realised they all had quite a distinctive shape.

Forty-five sweaty minutes later, I found a picture in the manual that clearly showed the order all the shapes had to go back on the bar. I'm not holding grudges here, but they weren't in the English version... I had to read the French, German and Swedish instructions to find the blotchy, photocopy-quality diagrams were a little clearer across the different language versions. I put everything back together with a sigh of relief that was only cut short when it became obvious something was horribly wrong with the camber of the rear wheels. The camber is what makes the back wheels stick out at an angle at the bottom, rather than go down purely vertical to the ground. It improves handling, and you see it to extreme on the big slanted wheels of sports wheelchairs. My wheels had camber, but instead of the distance between them being wider at the bottom, it was wider at the top! My chair took on a kind of 'bunged-up' look, as though it was holding itself in. Eeek! How did that happen? I knew I'd put everything back in the right order, and another forty-five minutes of sweating and looking at the Swedish instructions seemed to suggest the camber nuts had to be positioned in a certain position to give wider camber at the bottom. Taking it all apart again I re-did it, and all of sudden it began to look alright, spurring me on, when really I should have stopped and thanked my lucky stars I didn't have to wheel round in a constipated-looking wheelchair, too ashamed to call the wheelchair service and admit my crime.

By this time it was around 2.30pm. That gave me 1 1/2 hours before Mr Fang came home for our planned supermarket trip.

You’d think I’d give up gracefully at this point, but my overblown sense of triumph in righting the wheel camber meant I was hungry to fiddle some more. Picking up the manual once again, I found a relatively easy job in removing some of the stops that held the rims (the section manual wheelchair users hold to push the wheels) away from the wheels. I had no idea if having the rims closer to the wheels meant I could self-propel any easier, but ‘a change is as good as a rest’, I said to myself, and before you could say ‘Sunshine-Bus-To-Hell’, I had the rims off on the floor. Shortly afterwards there was more cursing, because all the neatly stacked little piles of stops I’d removed and set on the coffee table got knocked off somehow and rolled under the sofa. Hard floors make things roll further, y’know. Sprawling on my stomach, I struggled to collect them, and whaddya know, I managed to find all of them bar one.

3.30pm. The ‘little job’ I’d mentioned to Mr F that morning had taken me most of the day. My clothes were covered in dust from crawling around on the floor. My blood pressure was most certainly up, and I had need of a shower. I maintained a faint hope my day’s activities had upped my metabolism somewhat, so’s I could justify some kind of biscuit reward, for in the heady rush of ‘fixing’ I had forgotten to eat anything all day. Where was that last hand-rim stop? Think, Fang, think – it’ll be in the last place you expect it to be. I shifted my weight slightly, whereupon I realised I was sitting on it. Hurrah!

Half an hour later, I was back to my usual unruffled self, ready for the supermarket trip. Mr F remarked upon my work, noting the chair rolled along much more smoothly. He pushes me in the chair out-doors, whilst I take over once we are inside on smooth floors. We negotiated a kerb at record speed.

‘It was a mere trifle’, I lied. ‘Easy if you know how to read a service manual.’.

The devil must have been listening to my gloat, for the next moment the whole world turned upside down, and suddenly all I could see in front of me were my feet and the sky, shortly thereafter filled with the concerned face of Mr Fang. ‘Ermm… you certainly made a difference to the weight distribution’, he said.