Sunday, September 30, 2007
So, as we've established, apart from knowing that I wrote a blog post, Thursday is gone from me. I wish I could tell you I'd been out, got smashed and had a wild, madly passionate orgy with hugely sexy, beautiful men with muscled, oiled bodies but I think someone else must've had that day even though it was really meant for me. Honest it was. Shame. Those men sound really rather nice. I suspect my day was much less interesting and that as is typical when I'm a bit knackered I wandered my way round the interweb going back to the same page twenty seven times thinking each one's the first, and probably slept. Lots.
I'd been to the dentist and then trailed round the supermarket on the way back so it was really lovely to go to neighbour's on Friday evening. It was a real neighbourhood gathering as neighbour chick who lives in the next road was there too and we were joined by neighbour's cousin. Neighbour cooked roast dinner, yum! As it so often does when women get together the talk turned to sex, and after we warmed up on the various merits of Johnny Depp versus George Clooney, it got quite dirty. We all had wildly different ideas about what was acceptable with neighbour chick insisting 'she wouldn't put a penis in her mouth, ewww' and howling with horror at me for making dirty jokes about 'dirty bum sex' and insisting everyone needed at least one toy. I'm still horrified I was the only woman in the room who owned a sex toy, now that's shameful.
We had dinner really early evening so it was crash out in front of the tv and read around blogland before bed at some ridiculously early hour.
Saturday brought high drama to bendy towers (well, some dramatic license!) the noise of a helicopter overhead became overpowering drawing most of the neighbours outside to find the police helicopter hovering almost directly above our houses. Some of us were more affected by this than others, lying on the floor with our hands above our heads and whimpering 'they've come to get me' but of course soon recovered with a bit of a slap from the others. Once all stupid jokes were out of the way neighbour and I went outside where we saw a policeman with his dog heading round the back of the houses. Just as he disappeared from sight Ziggy's friend Zelda appeared looking rather concerned at the numbers of policemen swarming around. Neither of us knew where Ziggy had disappeared to since he'd not turned up to see me the previous evening and he wasn't home to meet Zelda so she'd had a momentary panic when seeing all the policemen outside his house. Ziggy is notorious for having random and crazy things happen around him, but he's far from a criminal.
Zelda came in to wait for Ziggy and we both straight out to the back where all the other neighbours were watching what was going on. The policeman was searching through the back alleys and some of the back gardens with the dog, so clearly someone had been very naughty.
With characteristic comic timing Ziggy turned up just as the policeman had gone, despite it being late afternoon still part drunk from the night before and part just thinking about whether to start again. It ended up being just thinking about it as later on we all smoked some dope and heckled through both shows of the X-factor. You've gotta love car crash tv. Simon Cowell is still my shame turn on, though I've thought about it and it can only be the power thing.
Today has involved the by now obligatory slog to buy chocolate, and eating it all as well. Ah well, never mind, at least the first part is vaguely healthy. In a vague way.
And I still can't remember Thursday. Ah well. It'll come to me I'm sure. Maybe next Thursday.
Saturday, September 29, 2007
So, bite guard collected, all of 60 seconds to fit it, make sure the edges were smoothed down enough, and a the totally unnecessary effort for me in clambering in and out to the consulting room, only to wake up this morning and find my gums are bruised and my front teeth are painful and wobbly. Well worth the effort I'd say. I think bite guards and I will now part company. After all, it's not like either the bite guard or losing my teeth will help my pulling power. I shall stick to jaw dislocations. Sigh.
Thursday, September 27, 2007
I do have a local rheumatologist, who on the one occasion I met him seemed quite nice but has the most horrendous work load and as Dr Grumble has just described so well, those pesky government targets only apply to new patients not those of us who need to be seen on a regular basis. No target to be met means waiting lists that can be endless. Situation summed up by this exchange yesterday
Dr FC : "Are you still seeing Dr X"
Bendy Girl : " who's Dr X? Oh no, I don't think so, but maybe in time, is that my rheumatologist, ooh I met him once?"
So instead, I have freak clinic. A consultant who wears all sorts of hats. Maybe years ago he would've been called a general physician, but these days he has to be called all sorts of other fancy things instead, though admittedly freak doctor is probably not top of his CV.
Instead of seeing this as a bad thing like so many I know do, as not being able to see a rheumatologist locally, I see freak clinic as a good thing. Dr FC was the first consultant I saw after I was diagnosed. I was scared and scarred from so many previous negative interactions with doctors. He treated me with the respect and dignity I'd never known before from a doctor. He was willing to help me when no-one else would. He was willing to learn about a condition he'd never come across before, and had only a vague idea about from text books. Once he started learning about that condition through my body he was willing as he put it "to throw everything he'd learnt in medical school out of the window when I came into the room". The most amazing thing about Dr FC is that he believes whatever my body presents to him. However bizarre that may seem. Understands that it might be pretty difficult for non-bendy people to say dislocate a rib by sneezing, but throw that collagen defect that causes EDS into the mix and anything's possible.
So yesterday was a big day at freak clinic. Smiles all round. When Dr FC started to see me just after I was diagnosed I was sporting the dangerously skeletal look, with slurred speech and a drooped face for good measure. Unable to support myself. (on my feet, not financially!) Now I'm at a healthy weight. With very noticeable boobs. Not a hint of slurred speech and only a droopy eye when I'm so tired I shouldn't be awake anyway. Walking well for someone on dislocating hips.
On the way in the lovely nurse who always tells me how glamorous I look even when I looked like Nicole Ritchie on a fat day told me I looked glamorous and voluptuous. Dr FC just wanted to know how I'd done it. I said it was as simple as it was impossibly difficult. I had a choice. I could either get really fat and end up in a wheelchair full time just getting more ill and more fat, or I could do what I'd done. Dr FC tried to control his laughter. The nurse in the corner didn't bother. Dr FC wanted to know how I'd done it though, and as everyone in the room was laughing so much by that point all I could really say was that I'd done it because I'd seen it as having no choice, the alternative was so unacceptable to me.
How was that I started by sitting on a wobble cushion for just 30 seconds a day, at first that was all I could manage. I built it up really slowly. After all, it wasn't like I had anything better to do. That was the bit that made it sound simple. It wasn't. Every second was a fight against excruciating pain and a body that wanted to do anything but what I wanted it to do. No physiotherapy. No occupational therapy. No pain clinic, they wouldn't take me on when I was at my worst, and when they would I was managing so well they got in a strop, not being keen on patients who've already done everything they would suggest and more. Dr FC knows that. He was there through all this. Just him, my GP, and me. With the true EDS specialist at the end of a phone if we needed him and a 10 minute appointment once a year. They've had their funding cut too. Being rheumatologists. Besides, there's plenty more people out there needing to be diagnosed.
Thing is, I might have done all this myself, but I'm pretty sure I couldn't have done it without the support I've had from Dr FC and my GP, and I know they've been scared. They did their best to hide that fear from me, but I always knew. It's got to be frightening being the person in overall charge of a patient with a condition you know nothing about, unable to get that patient any of the help they need, while those who control that help the social workers, the occupational therapists, at times the physiotherapists turn their backs on you and ignore the situation.
So I suppose that makes it even more gratifying when, despite everything that person gets so much better. Yes, I should have had access to rheumatology locally, at minimum every six months. I still should have that, but I realise that I can't see my rheumatologist because he's too busy trying to meet government imposed targets that tell him to see all new patients like yesterday while the fuckwits in the Dept of Health fail to realise these new patients are mainly grossly overweight and moaning that their back/knees hurt, instead of those of us who actually have complex conditions that need medical management rather than someone to say 'no shit. lose half your bodyweight then you might find your knees hurt less'. I can do that without going to medical school or needing a six figure salary, but then the department of health never like to include real patients in their stupid surveys.
I made the best of things with the help of Dr FC, I couldn't have done it without his support and the support of my GP. My GP couldn't have supported me without Dr FC and neither of them would have felt confident without the specialist to call upon, but we've all done it in spite of, not with the help of. My big concern is that with the changes going on in the health service there won't be a Dr FC for the next person who needs him, and that would be even more tragic than the lack of rheumatologists.
So in answer to your question Dr FC, I'm not really sure how I've done all this, but I do know I couldn't have done it without you and I thank you for that. You are part of my how.
And yes, after everything I think you should say sod the GMC and go ahead, write "patient now has big boobs" in the notes. We've all worked damn hard for me to be here with any boobs at all.
Wednesday, September 26, 2007
I'm going to write up the appointment separately when I'm less tired, but in contrast to all the crap that gets spouted about the NHS, I have nothing but good to say about this consultant and his clinic. I didn't even take a book or magazine to read because I know its so well organised that by the time I've given my name, been weighed and had my blood pressure taken, I won't have had time to drink much of the cup of tea I buy on the way in to the appointment before I get called in to see the consultant himself. On the occasions I've seen his registrars they've been superb too. This time was no different.
I was still knackered though, I had to get something done about my hip afterwards, it was stuck in a funny position after I'd fully dislocated it a couple of times on monday. Toes and I went and pootled round some cheapy shops ending up with me collapsed in a heap on the pavement outside the butchers. Toes made me laugh so much I dislocated my hips and flopped down, starting the whole laugh at each other til we couldn't stop cycle off again.
Throw in a hair cut, a trip to the vet and a rather heated committee meeting this morning and that's the week so far.
Tuesday, September 25, 2007
Its going to be a long day, wish me luck!
Monday, September 24, 2007
After too much dithering about was it a good idea and could I be bothered, I decided to force myself to go to citycentre with Toes, Ziggy and various others for a night out. It was indeed fun in the insane way only nights out with those two can be, and unlike the last time I went to citycentre, which is longer ago than I care to remember I didn't get a man's boot thrown forcefully into my face. Which as I'm sure you'll always agree is always a bonus on a night out.
We started off having something to eat to celebrate Leah's birthday (Toe's ex ex girlfriend) in a bar in a laid back more studenty area of town. I drove there to meet the others, arriving a bit of a shaking wreck having done exactly I tell you, exactly as my sat nav told me to do...and ended up a shaking wreck around the citycentre, miles from where I wanted to be, stuck in bus lanes and at one point only realising I was not in the right hand lane of a one way road when a very angry driver beeped his horn at me....alot. Damned sat nav. Last time I listen to that thing. This of course is the same citycentre that Roland is a traffic policeman in. So at least my distressing inability to find my way out of a paper bag amused someone.
Having taken 50 minutes to make a 15 minute drive stressed out as I'd been told by Toes just how late I was, I was thrilled when I got to the first bar nearly an hour after the time I'd been told was an hour late and found none of the others there. With the exception of Toes they all currently work for another friend of ours who has a most unusual approach to business so they'd kicked off the weekend at lunchtime and had been drinking brandy and imbibing illicit substances all day, which is fine as it's only smoking that's now banned. I phoned Toes when I got to the bar and they turned up pretty quickly.
I'd not really thought about how much a problem access was going to be, other than a concern about how crowded places might be, and would I be able to sit down. This first bar should've warned me of things to come. There was no disabled loo that we could see, and I couldn't get to the back of the bar where the women's loo's were without either Ziggy or Toes helping me up the steps to get there. It wasn't a problem particularly at this first place, but only because I've got such lovely mates.
We had a meal at this first place, which for some of us was nice and for others so horrible it was inedible and then decide to head into citycentre proper to try and meet up with Toes works night out. This time the drive was easy as Toes knows his way around far better than either I or the satnav so we found somewhere within my 'being dragged along distance' to park relatively easily.
We got to the bar where all Toes work friends were...and the bouncers wouldn't let us in. Both Toes and Ziggy have what you'd call a fabulously eccentric dress sense, and it did not meet with the bouncers idea of what they wanted in their bar on a friday night.
We ended up going to a club night one of Toes friends was putting on, or something. It was in a basement bar. Access via a concrete staircase. By the time we got there I was having a raggy doll moment and being held up by Toes and Ziggy, who completely pissed tried to explain to the bouncer that I wasn't pissed, just had mobility problems as he swayed as much as me! Fortunately Toes was less pissed as he had to carry me down the stairs. And back up again to get out later on!
We stayed in the basement bar for a few hours where there was plenty of room to sit down, hang out and talk. As usual all the best conversations happen in the queue for the toilets where I ended up chatting to a gorgeous gay girl about corset tops. Although it was a nice enough bar the music wasn't up to much and I wanted to revisit my youth so we headed off to a final bar which although it's a total dump has a great atmosphere and loads of cheesy pop to dance to.
Again Toes had to carry me in this bar as it was up steps, but skipped off once we got in there as we'd caught up to his work friends. That's when it got really bizarre. In walks this girl. This girl who looks just like me. Uncannily like me. Which when you're 4'8 is pretty unusual. To the point I've never met anyone truly my size before. And nor had she. We just kept staring at each other. Although I wasn't the only one she was staring at, and her stares were being returned. Bless him, Ziggy's totally smitten and they're off on a date later this week. It's so lovely.
We'd gone to this last bar for the cheesy pop and the dancing and that was exactly what we did. The dance floor of this place is in a basement with a floor that's always soaking wet from spilt drinks and the sweat running down the walls. I got down there on my own feet with Ziggy going backwards in front of me holding my hands and helping me down, but after dancing to a few tracks there was no way I was getting out under my own steam. Ziggy and the girl who looks like me were dancing away together and kept disappearing off, it was so sweet! The atmosphere in there was really fun despite a group of girls openly laughing and pointing at us as if we somehow wouldn't be able to see how offensive they were being because we were small. The men however had far better manners and were far more interested in pulling than anything bitching could offer.
I may not be able to walk properly, but being bendy one of the few things I can still sometimes do is dance, or more realistically writhe in time to the music, usually using something to prop myself up on. I have a horrible feeling this looks like some sort of lap dance to anyone who's not me but pretending that's not happening means I can dance in public until I can't walk any longer. The trade off this time was about 15 minutes all together spread out over an hour for two days unable to walk or leave the house and three full hip dislocations in fairly quick succession today, one outside the butchers shop leaving me on the floor in a heap for five minutes while Toes just made me laugh so much the chance of my being able to go anywhere got worse and worse. I thought it was worth it.
I'd danced, or rather wiggled around enough to have to be held up by Toes, and Ziggy was gutted as his pixie girl had been dragged away by her friend so we decided to call it a night. Toes carried me back up to the ground floor and then I decided I needed a wee before driving home. As you do. Except it turned out there weren't any female toilets on that floor. And they looked blankly at us when we asked for a disabled loo. Didn't have one. They just stared and insisted I'd have to go back downstairs or upstairs. Toes and Ziggy started the usual explanation about mobility problems which didn't seem to be needed as my legs were going from underneath me and I obviously wasn't drunk when I spoke. The women on the door agreed to close off the men's toilet for me to go in there, so Toes went in to check it was empty before coming in with me whilst the bouncers waited outside to keep any men out. It was disgusting. It stank. I felt sick. I didn't have any choice. There was no way I was able to face any more stairs and even being carried was too much by this point. I couldn't wait until I got home so this was the only choice, but it was disgusting, made me feel sick. Especially as while I was in there trying not to touch anything I could hear pissed blokes outside trying to kick off on the bouncer that wouldn't let them in and Ziggy trying to explain to them why. Degrading.
We walked back to the car all arm in arm, then stopped and in a car park stuffed our faces with the McDonalds we'd all craved, a dirty guilty pleasure at the time but the wheat only adding to my misery as I suffered over the weekend.
We had a top night out.
Friday, September 21, 2007
Neighbour went to do a supermarket shop this morning. She doesn't drive so I said I'd collect her, as long as I didn't have to get out of the car as I'd still be in my pj's. Pajamas and walking boots being a look I perfected some 10 years back whilst working on summer camp. Perfected meaning I wore one pair of pj bottoms and hiking boots until the pj bottoms fell apart. Literally. Whilst I was wearing them.
I'm much more of a classy chick these days. My 'going out' pajamas are really more of the tracksuit style with trouble emblazoned across both my arse and tits. Because obviously that's what all 9 year old girls should wear (I had to check the label to see how old I am today)
It all seemed very straight forward. Fall out of bed. Fall downstairs. Try not to break anything. Wake up for half an hour. Collect neighbour. Stay in car. Stay in car. Stay in car. That was where it went a bit pear shaped.
I decided I was hungry and wanted sausages. So on the way back from the supermarket we stopped at the butchers. Neighbour went to collect something for me from the chemist while I went into the butchers to get some gluten free sausages. Still in my pajamas. While I was waiting one of my old lecturers from university came in and we started to catch up. As you do. Well, maybe not, but round here that's quite normal. Apart from maybe the pj's. Which did go down a bit too well with the butchers. I was having a good old gossip with my old tutor when neighbour came in and so we all decided to head off to have a cup of coffee.
On the way there I explained to neighbour who was looking a little bewildered as to why I was so nonplussed about going for coffee with my old professor in my pj's that actually this man had seen me in far worse states than I was currently, including but not limited to, having had to tip me out of bed still drunk in the morning to try and get me to a presentation lunch partly in my honour whilst I lay there begging not to have to move.ever.again. and having had to conceal my food from the waiters in the Savoy while I moaned that I was going to vomit onto my plate and begged for mcdonalds. The most productive thing I was taught at university was that men want to marry the woman who they can take to their company do, have talk to their boss, have every man there fantasise about taking her home and fucking her up the arse the way their own wives won't let them and know she'd only ever be that dirty for you. I was 19 when this was explained to me by another, much older tutor and it's shaped my view of men ever since.
University was great. I learnt how to wear pajamas at all times, and be a slut. The things one is supposed to learn. Not usually taught as part of the curriculum however.
Before anyone asks. No, I did not sleep with any of the lecturers at my university.
Thursday, September 20, 2007
The figure, calculated by the University of Leeds for the charity Carers UK, is up 52% since the last estimate, calculated in 2002
The weekly rate of Carer's Allowance is £48.65. It can only be claimed by those providing a minimum of 35 hours care a week. Makes a mockery of minimum wage and any statements of how much carer's are valued as this works out to £1.39 per hour, and that's only if the minimum 35 hours are stuck to. Only those over 16 are eligible to claim carer's allowance meaning the estimated 175 000 child carers in the UK are not entitled to even this small amount of money. You cannot claim carer's allowance if you are in full time education with more than 21 hours per week of supervised study, or if you earn over £87 per week (after certain deductions such as income tax)
If carers were to stop what they do, even for just a day the NHS and social care system would collapse. But they're worth only £1.39 per government calculated hour, nothing if they happen to be under 16.
Wednesday, September 19, 2007
This print hangs on my bedroom wall, there to remind me of who I am. It was shot about six years ago. Since then my appearance has changed so dramatically so many times that when I look in the mirror I no longer recognise the face let alone the body that I see looking back at me. Curly hair. Brown eyes. Those have remained constant. The only ones.
I'm not sure when it was, maybe four years ago I started to gain weight. Unusual for me, someone so noticeably petite and conscious of appearance. In the 'real world' I'm that person. The one who eats a constant stream of junk food. Who's friends find it hilarious. Who strangers see fit to make bitchy remarks about. Loudly. Audibly.
So to gain weight was unprecedented. Particularly at a time when I wasn't exactly eating. Anything really. EDS affects the inside as well as the out, bowel and bladder no exception. I was vomiting on a daily basis. At times uncontrollably. Projectile. But gaining weight. Initially on my breasts. Then my stomach. More and more swollen. To the point that friends and family thought I was lying to them and concealing a pregnancy. I wasn't. I hadn't had a period for four years.
I stayed uncomfortably swollen for months, the heaviest I'd ever been, sick, miserable and eating next to nothing. Then seemingly as suddenly as I'd started to gain, my weight plummeted. I went from an DD cup bra to an A cup pausing only long enough to buy one C cup one the way down. For someone with a wicked underwear addiction that was probably the most surprising thing of all.
Being that thin was horrific. (the photograph was taken once I'd started to gain weight) Why anyone would aspire to it I'll never know. I'm always cold but that was something else. I later found out the few people around me hadn't expected me to live through that winter. I couldn't sit in the bath without extreme pain I was so thin it bruised my arse. I was permanently on antibiotics so vulnerable was I to infection. Tearful. Constantly Confused. Frightened. Disorientated.
On the rare occasions I went anywhere a disturbing amount of women told me how fabulously thin I was. How great I looked. How jealous they were I could be that thin. Others continued with the usual bitchy comments delivered in tones meant for me to hear. It seems so thin you might die truly is a look women and girls these days aspire to. Think those who are thin have some sort of secret they don't. I'll let you in on it. It's called genetic disorder near death experience. Women, get a hold of yourselves. It's not big, not clever and it's certainly not attractive. I usually get more than my fair share of male attention. When I looked like that I got none. Unsurprisingly. Men do not find the 'I'm so thin I'm about to die' look attractive.
Last time this started to happen I hadn't yet been diagnosed. It was of course put down to my amazing ability to make my body do almost anything in the name of attention seeking. I did once comment that if I were able to control my body in the way alleged by so many doctors I would be making a fortune from it rather than 'seeking attention' from what were typically overweight and unattractive middle aged men.
After I was diagnosed and was lucky enough to be taken on as a patient by one of the superb consultants who still looks after me now more sensible reasons than attention seeking were looked for. Particularly when this consultant saw a photograph of me taken only a couple of years previously and asked who it was. Could not believe it was the same person. A variety of tests were done. Ideas thrown around. One hormone level was high. That explained the lack of periods and rapidly growing breasts. The vomiting and swelling we figured out was due to internal laxity. The digestive system after all is a type of muscle (I'm sure it's more complicated than that medically) but, in my case it's lax and weak. It doesn't like to work. Put anything inside that requires my stomach and bowel to actually make some effort, it gets upset, throws a hissy fit and goes on strike. Swells further and further out. Both my GP and consultant have double checked for an extra heartbeat when this has happened as I go from flat stomached to looking pregnant. Within minutes. Just to be sure. They only ever hear my heartbeat.
Eventually, gradually I gained weight. A long hard battle fought to reach a healthy weight. It has taken me three years. That makes it sound simple. It was anything but. (taken earlier this year)
Now after all that hard work I'm concerned the cycle may be starting again. My stomach is frequently swollen. My breasts have enlarged at a worrying rate. My periods regular but lighter than they were. I can't stop eating. I am constantly hungry. I feel as though my body is playing a sick joke on me. I can't see how I could be pregnant. I wasn't pregnant last time this happened. I have that same strong sense that something is about to change that I felt last time. I'm just hoping that this time it will be a positive change.
Monday, September 17, 2007
I did briefly toy with the idea of trying to climb up the lower shelves and help myself, but I knew that was asking for trouble. I had visions of trying to explain to the paramedics what I'd been doing. Well, er you see, there's this blog I read. And I thought I'd buy a magazine for the bloke that writes it. Oh yeah, cos I was sending him a parcel. He's a soldier you know. Yes, dislocated hips. And shoulders. No, probably you're right. Not the best idea
So there was nothing for it but to ask someone to reach the shelf for me. I considered the bloke in the shop clearly buying sweets for his kids, but he looked like he'd explode if I so much as spoke to him, so I asked the girl behind the counter. "Can you get me a top shelf magazine down please" Whilst giggling. Like a maniac. I don't look terribly threatening, or apparently as though I'd be into any kind of porn as she giggled a lot too and climbed up on to the lowest shelf, asking me if I had any idea what the magazines were. I didn't. Sorry Middy, I've just never got in to porn. My friends think I own the only computer free from porn left in existence. Unfortunately the girl in the shop didn't know anything about porn either apart from my explanation that it was being picked out to send in a care package so she chose the one with the free dvd. Then we realised they all had free dvd's. And blanked out covers. I hope we didn't pick you donkey porn.
Donkey porn aside, it was easy to put a parcel together with a few treats and now that it's free to send parcels to named forces personnel, inexpensive. I mentioned this earlier to Roland, who as a policeman was rather chuffed to hear about this and immediately offered to send Middy a parcel too. Now, I've no idea how long Middy's on holiday for, but I do know there will be some people not lucky enough to receive any mail whilst there out there. As a few other people have offered to send parcels to Middy, perhaps he could let us know how to go about this?
So on Monday I returned the call. I waited on hold. She's not at her desk. I left a message with the very nice receptionist who assured me the Occupational Therapist (OT) would phone me back.
On Tuesday there is a recorded message when I phone. Out of curiosity I listen through to the end. It tells me what to do if I need a repair to my wheelchair out of hours. Ring this other number. Nothing to do with the NHS wheelchair service then. They must've all finished work for the day. At 4.45pm. I can't be bothered to leave a(nother) message on this machine.
Wednesday morning. I try again. Speak to the receptionist. Confirm I am returning the call. Explain I am not sure why they want to speak to me. I have been referred by my GP. The OT is in a meeting. But she does want to refer me to another OT. One I have seen previously. One who previously told me I could not have any equipment for the bath as it would not fit. An OT who never measured the bath. An OT who told me I needed and was entitled to an electric bed raiser. Told me she would get me one. Then looked at my bed. Said 'oh'. You have a slatted bed frame. You can't have a bed raiser. An OT who did such an appalling assessment it later had to be redone properly by a different OT. One who did at least measure the bath, but still wouldn't provide any equipment to help. Apparently my hips were 'too bad'. I might hurt myself on the equipment they (the OT's) had provided. Such a shame the first OT had not measured the bath. When my hips had not been quite so bad. And I would have been safe to use the bath board that fitted and she claimed would not but could not be bothered to measure the width of the bath and find out. An OT who when delivering a key safe organised by someone else distressed me so greatly I asked her (politely) to leave my home. An OT who then told her manager I had refused her access to my home, had refused to sign a form, listen to her instructions and 'been rude to her'. An OT who wasn't terribly successful with her complaints against me as when I spoke to her manager about it, I pointed out that someone was not telling the truth. That considering they had a signed copy of the form their OT was claiming I'd refused to sign and that I knew the code to said key safe along with instructions for use that the OT had claimed I'd not been given it wasn't likely to be me not telling the truth.
I tell the receptionist none of this, but say that there have been problems with this particular OT in the past, and I would very much like to be referred to someone else. Please. Thank you ever so much. I would really appreciate it. Yes my height and weight are correct as on the form.
This time the original OT who left the message does call me back. Within about 15 minutes. Why do they want to speak to me? Apparently on the form filled in by the teenage receptionist at my GP's surgery which with approximately 20 GCSE's, a fistful of A levels and a degree between us, neither she nor I could understand the vast majority of, we ticked the box to say I am interested in the voucher scheme. They want to know if this is so. Er. Right. Ok. I say that I know next to nothing about the voucher scheme but I might be interested. I won't know until I know enough about it and more importantly, what wheelchair I will need. So maybe. I ask will they go ahead and book me an appointment now?
Oh yes. We'll send you one out in the post.
NHS efficiency at its best.
Thursday, September 13, 2007
As I had to go to there last week too. And I've got to go back again in a few weeks. Like I've been doing for the past year or so. As far as I know that's not a situation likely to change. I can't imagine a private practice would take me on as a patient. Not that I could afford the cost of private dental charges if forced into that situation.
Problems with teeth and gums are common to those with EDS. Although EDS is thought to be a condition affecting primarily the joints, collagen affects pretty much everything in the body. It's like the cement in a house, strong in most people, pre chewed, left out in the sun runny chewing gum in EDS'ers. We tend to have very high arched palates (something that should be checked for as part of the overall diagnostic process), narrow jaws, fragile gums, some have very overcrowded teeth, or even loose teeth. As an undiagnosed teenager affected by the hormonal changes of puberty, I was convinced I would wake up one day to find my teeth on the pillow next to me as my molars were so loose and wobbly. I could wibble them around with either my fingers or tongue. Years on my teeth have stabilised but are apparently a funny blue colour which very much excites those doctors who understand what it is and infuriates both my dental practice and myself who know it means my teeth are vulnerable to anything and everything and can require proper cleaning by the hygienist as often as every three months so badly do they stain. Even these days when I don't smoke any tobacco, hardly ever drink tea or coffee, and am effectively teetotal. (ignoring the out of date Baileys incident. ahem)
Last week I saw the hygienist who cleaned my teeth, and this week I returned to see the dentist. My gums have receded exposing the dentine and my teeth are literally starting to 'crumble' away in places, not helped by my ability to grind through every bite guard made for me within days. We are trying to find ways to deal with this. I do not have any decay thanks to my mothers complete obsession with sugar and so have never needed even a single filling. This I suspect is likely to change as I eat sweets like well, er candy these days. As I write this drumstick lollies and liquorice flyers. Bliss. I'll be sorry tomorrow though as the damn things contain wheat.
It all sounds great. Apart from the sweets. Except I can't open my mouth for examination let alone treatment without my jaw dislocating so it is an uncomfortable experience to say the least. My face is still slightly puffy from last week's clean. This time as if to illustrate a point, my jaw dislocated with a resounding pop as soon as I opened my mouth for the dentist. I thunked it back into place and supported it with my hands as usual throughout exam and brief treatment stopping every so often to pop it back in as it insisted in sliding straight back out. It was all over in less than 10 minutes and having booked another appointment for a few weeks time for an impression for yet another bite guard I went off to see the beautiful young man (which let's face it is far more interesting than my jaw dislocating in the dentist!)
Tuesday, September 11, 2007
I don't expect to win the $50, nor do I want to have the hassle of declaring it to the Department of Work and Pensions as income thus being thrown off benefits, but so I don't sob myself to sleep every night about how unpopular my blog is, a vote or two would be nice. Please?
Monday, September 10, 2007
I freely admit to not being able to add up once I've run out of fingers and toes, so maybe someone able to count past 20 will be able to help out, but even so this makes no sense to me.
That aside, as far as I can make out, Remploy, which has been assisting people with disabilities to work, primarily in their own factories for over 60 years (formed to provide work for those injured during the Second World War) is now being threatened with closure as it's factories are apparently making a loss. The chief executive of Remploy, Bob Warner claims
"The unions' interest is only in maintaining loss-making factories which cost the taxpayer millions of pounds each year. This would prevent us from helping thousands more disabled people into employment each year."
Of course the unions feel differently and
So, what's the real issue here? Mr Warner spells it out,
Er, quite. So, factories which apparently have potential profitable contracts are going to close, forcing all employees to to seek lower paid work elsewhere, meaning the balance will be made up by the tax payer. Apparently though this is just fine, wonderful even as the tax payer is paying the additional salary, pension etc to the employee and not employer.
I can't fathom how this is good for anyone. Not the tax payer, not the remploy employees, who are devastated at the loss of their jobs and for many their place of long term employment, and certainly not for British manufacturing, already hit hard in the current world economy. Now, perhaps I'm wrong, and just don't understand the economics of this. I shall ask the Devil if he might be so kind as to help me understand?
Despite being unable to count, I'm blessed with a healthy degree of cynicism, and can't help but feel all this is somehow connected to the the government's desperate drive for Welfare Reform, which as there has been such a stunning lack of understanding of the true barriers and problems faced by those with disabilities wanting to work is set to make an already difficult situation far worse. All that seems to have happened so far is existing jobs are under threat and vast amounts of money have been poured into the creation of job brokers, which as I've previously explained seem to do absolutely nothing other than create lots of jobs for er, those without disabilities.
(If you look at the links in the job broker post you'll see that every one takes you to a different job broker. All doing the same thing. Fuck all. )
Sunday, September 09, 2007
As I arrived at the bar we usually base ourselves in for such activities, locally named Dodgy Rodgers, thus hinting as to the ambiance, a man told me he liked my shoes. A strange man. A not just strange in general man, but also complete stranger to me man. I knew then it was going downhill. Fast.
I went inside to order myself a coffee. The strange man followed me. Came up beside me where I was waiting at the bar, and started to sniff me. Audibly. I tried to back away but there was nowhere to go but bar. Strange sniffing man had me pinned between him and the bar, and he kept sniffing. Told me I smelt am maz ing. I'm used to such strange men. Was born with a magnet for them, but still. This was a little annoying.
Strange sniffing man continued. To sniff that is. Not a great reader of body language this guy. I was surprised he could smell anything over and above eau de stella Perhaps this was some mating ritual so sophisticated I'd not realised. Sniff, sniff, sniff. He asked me what I smelt of and I told him, Hypnotic Poison. 'Oh', he says all disappointed. 'I thought it might be some special aroma, just of you'. 'Erm, no, fortunately' I say 'this is made by Christian Dior and comes out of a bottle'. 'An expensive '(it's all relative for Stella boy remember!) 'bottle'. He didn't take the hint.
My coffee arrived and I went outside. Looking hopefully for support from Ziggy and another friend. As if. They were helpless with laughter. The bastards. Strange sniffing man continues to labour the point that he feels the am maz ing aroma is clearly all me and not perfume. He starts to sniff me again. I am unimpressed, but this time sat on a dip in the wall where Ziggy has lifted me to, so I'm really unable to move away. Strange sniffing man has a friend. Who decides to join in. Tells me he likes my belt. Is it making a statement? 'Er, other than that I like sparkly things, no.' But I will be very soon. Trust me. To the police.
Sniffing man is emboldened. He starts to stroke me. I lean backwards as far as I dare and tell him firmly to fuck off. Stella being involved I have no desire for him to suddenly turn on the object of his sniffing affections and bottle me before Ziggy can get to me to intervene. Sniffy doesn't get the message though he does stop stroking me and return to sniffing. Asks who this Christian Dior character is and how much he costs. I consider briefly telling Sniffy more than he could ever afford to touch me, but know that is asking for trouble. Know that will invite offers of money and yet more stroking.
Sniffing man is disappointed I've told him to fuck off. Fortunately he takes it well, and not as an invitation to hit me in the face with a glass bottle. After a few more sniffs he drunkenly staggers off. I am greatly relieved.
Later I phone Roland and relate this tale of sniffing. He howls with laughter. I tell him he is my local friendly neighbourhood policeman and I am reporting it to him. He says he isn't too sure where sniffing comes in the vast array of criminal offences and as this is not a car he couldn't give a fuck. It is very funny though. You couldn't make it up. You'd better put it in your blog.
Friday, September 07, 2007
On Wednesday evening it hit me. It has been a strange kind of week for me. An amazing kind of week. The feature in the Britblogs, then the mention on the radio 5 slot. So, I should've been expecting it. Maybe in the back of my mind I was. Just not like this.
After a day spent with Roland where he'd floored me with some of the things he said, in the evening I found Vi had given me the courageous blogger award. Things reached a bit of a head with Big and I realised I had to move on. Whatever decision I'd made earlier this year, now was the time I had to be strong with myself and put him, all hope behind me.
I ended up crying so hard I was bent double. I don't think of myself as brave, I just do what I have to do. At the end of the day, what choice have I got. Really? It simply isn't something that factors into my everyday life. Sure life is a little, well, different from most. All right a lot different, but I suppose I'm usually too busy getting on with things to think about them in that light. The light that perhaps other people see me in. That this week I'd been forced to focus upon myself. By being told I was courageous. By hearing my post described as passionate. EDS as a debilitating illness. By being forced to confront the realities of my life through other people's eyes I stopped for a while and thought about things. And they hit me like a ton of bricks.
I cried and cried. At first for Big. For the letting go of a relationship. It became something much bigger and stronger though and as I doubled over in pain I realised I was grieving. Not for myself, not for now, but for the losses. For the little girl I was aged 10, struggling to walk on a newly dislocated hip, confused, in pain and frightened. Told by teachers she couldn't be in the school play if she continued to use the crutches they didn't believe necessary. I wept for the 4 year old trying to learn to write on fingers bending backwards and dislocating, struggling to make shapes on a page. The 16 year old unable to understand why others could write page after page in exams, when her wrist gave out long before her mind finished the answer. The 13 year old held down at school whilst other girls mashed fruit and sawdust into her hair and all over her. For how many adults looked the other way that day. And every other. Because it was difficult. Confusing. Unusual.
It feels good to have started letting it out. Although I still don't see myself as anything other than me. Just getting on with things. Like everyone else.
It's been one hell of a week one way or another in the life of bendy girl. Bit of an emotional rollercoaster really. Thanks so much to Vi for awarding me
The Courageous Blogger Award
For those bloggers who are battling or have battled with physical and mental illness, those who are survivors of abuse, poverty, or who have overcome other challenges in life. Those who serve in the military or work/volunteer in dangerous situations in order to provide a service or to help others. This award is for the strong, the brave, and the courageous.
Benefitscroungingscum - (which she is not, by the way!) BG, you are an amazing woman, coping with such a rare disability. You make me laugh, you make me wince, you make me angry (at others, not you!) with your trials and tribulations. The positiveness you have just oozes through your blog. Keep smiling baby!
I'm going to take my time and think about who I want to pass on my awards to, but thanks Vi, you made my day!
Wednesday, September 05, 2007
How did I break it? Well, in true toddler with a piece of toast into a video style, I pushed a memory card into the slot and got it stuck. It should have had a sign on it saying "for all stupid people with teeny tiny bendy fingers...you might well be able to push the teeny tiny card in there, but no way will it come out. not ever. you.are.a.fool.yes.you"
And that was that. There it stayed. 'Cos really, how was I supposed to know that you were supposed to put the small cards into a bigger card to put them in the slot? Humph. I did try to get it out. I pushed at the slot with my fingers. Could even wiggle one of my little fingers almost into it. It wasn't budging. I hit upon the idea of tweezers. Genuis! They worked. Ziggy, technical advisor extrodinaire, knowing my abilities well issued firm instructions. Turn your laptop off before you stick tweezers in it. Ah. Why? I asked. So it doesn't short out. Oh. Best not say I've already tried several times then while we've been chatting on msn. With no luck. But no shorted out laptop. Whatever that means. He knows me well you see. Was the person who tried to fix the pc I blew up. By falling over trying to carry a cup of tea. Tea left cup. pc blew up. Later during pc surgery we, alright he found sticky tea like substance covering all important parts. Tea kills pc's. Even when flung from across a room. We've yet to hold the funeral.
So, I follow Ziggy's instructions. After all he knows how to fix things, whereas I just know how to break them. Turn laptop off before sticking tweezers into hole at front. I can do that. It would seem I can also use tweezers to jam the memory card twice as far back into the slot. That thing was not coming out. Whatever I did. Not really a great surprise. I jammed it in so far that even Ziggy couldn't get it out.
So there it stayed. Irritating me. Slowing down my laptop. Every time I turned it on, every time it went on to standby, every time it did well pretty much anything the damn thing tried to read this stupid memory card that I jammed in there not even knowing what was on it. It was time to do something about it.
I managed to get my laptop into it's bag, and headed off to PC World. Yes I know they get an appalling press, but really they can be quite nice. Especially as I didn't buy my laptop from there.
On arrival the usual kind of irritation. Every single disabled space was full. I had to park in a bay intended for a different shop. Meaning I had to 'walk' much further than I should have done. And we all know how easy walking is for me. I wouldn't mind, but as I went past the cars in the disabled bays, holding on to the bonnets of most of them for balance I checked. Not a single car had a disabled badge on display.
Yesterday was one of my better days. No staggering. Mostly 'walking' in a straight line. A limp/gimp that could be mistaken for a very exaggerated hip swing. I tend to lean on things for support. Inanimate objects are my friend. They hold me up. With the unfortunate side effect that I tend to bend forwards at the waist to support myself, looking I suspect like I'm ready to be taken from behind. In public. Big always found this alternately highly amusing and deeply disconcerting. He suggested it might be partly where the male attention comes from. I suggested it was better than falling over.
So I waited at the customer service counter in PC world, swinging off the counter as my hips flicked in and out and grinned at the man being harassed by a rude customer. After a few moments he was done and asked if he could help me. I giggled a bit, asked him how he was, told him I was stupid, explained what I'd done and asked if he could please help, and if so would it cost me a fortune? He laughed at me, and took my laptop off into the back.
After almost 10 minutes there was a bit of a queue starting to form and I was getting a bit embarrassed. I could see the nice man struggling to extricate the memory card from where I'd thoroughly jammed it, trying a variety of different tools and eventually having to get a colleague to help him. Between the two of them they sorted it out, and came back through giving me back both laptop and memory card. I thanked him very much and asked if I owed him anything. He said no, laughed and told me not to do it again.
So thank you very much to the nice man in PC world. So far I've not broken the memory card reader, but I'm sure it won't be long before I break something else. Let's just hope it's something you can fix so easily.
Tuesday, September 04, 2007
Monday, September 03, 2007
Thanks to Clairwil for letting me know!
Sunday, September 02, 2007
Chocolate heaven, ie the local garage is about 200 meters away from my house. Give or take 100 meters. I'm appalling when it comes to judging distance or size, proprioception being something EDS'ers have issue with. Whatever, unless you work for the DWP deciding on Disability Living Allowance, it really is irrelevant. Even then it really should be. Suffice to say most people can walk there and back around two minutes, including time to dither over what chocolate they want. But we all know I'm not most people. Which is why I thought it would be a good idea to 'walk' there. In the rain.
Apart from the fact I'm clearly masochistic, and wanted to lie on the sofa and stuff my face with chocolate all afternoon guilt free, there is a reason for punishing myself like this. After all, I could just drive there. NHS physiotherapy for chronic conditions seems to be an urban myth. Sure you can ask your GP to refer you, and if lucky enough to have the kind of GP I do these days they'll do just that. Then they'll do it again, and probably again when the referrals float away into the great referral hole in the sky. But one way or another you wise up pretty quick to the fact that although physiotherapy is available, it buggers up the hospital's statistics to have patients around who
Given that I reckoned I could either figure out some way of devising and managing my own long term physiotherapy, or I could do what so many others do, which was to get really seriously fat. We're talking huge. And I like my body the way it is. Looks like Kylie from the neck down, doesn't work for shit. Hmm, maybe I'm Danni Minogue and no-one told me? Anyway, obviously getting fat would wreck any chance I might have of managing to hang on to my mobility and seriously increase my pain levels. So that's why on a sunday afternoon I took a couple of hits from a spliff and headed out the door to get my chocolate.
For the first 10 meters or so it went well. I was making good time, not wobbling too much, actually going in the right direction. All good. Then came the hill. Alright slight slope. Every step is a huge effort. My hips are so unstable they come out of their sockets just from weight bearing. I've freaked out many a doctor who insisted it was 'impossible to dislocate a hip without massive trauma' by dislocating my hip into their hand, but still, this was for chocolate!
To take a step I have to engage my core stability. Think pelvic floor exercises on a grander scale. So, I clench my pelvic floor as hard as I can and start to try to swing my right leg forwards. Most of the time my right leg doesn't feel like doing that and so swings itself backwards before I argue with it to tell it to go forwards again. Old ladies zoom past me. Snails wizz past me. Fuck, it's sunday afternoon and it's raining. I failed to factor in how busy it would be, even in small town land. Cars slow down as they pass me on their way for petrol. From behind I am unsure whether I appear insane, drunk or a child playing games out alone. Possibly all three. Keeping my pelvic floor clenched to keep myself upright has an (un)fortunate side effect of making me think about sex. I smoked a lil pot before I left the house to deal with the pain so I'm easily distracted by these thoughts about sex. I blog randomly in my head.
I'm knackered. Bugger. Still only halfway up the slope. This is no slope it's a fucking mountain. What possessed me? Am I insane? Clearly. Fucking NHS, fucking physio, bastard fuckwit doctors who didn't diagnose me. Breathe. Deeply. Chocolate. Focus. Chocolate. It's taken me 10 minutes to make it approximately 10 meters. No wonder people are staring at me.
I focus, try to pull it together, I've still got to get to the garage, buy chocolate, get back over the slope and home. My hips feel like they are full of acid and I want to weep. My SI joint is in a funny position too. Probably only to be expected with what I'm trying to do.
I carry on. Grit my teeth. Remember that I've managed to destroy my teeth by grinding them and try to stop. Realise I'm clamping my jaw down. That makes me stop. My jaw dislocating has interfered with my ability to give blow jobs and that is just wrong. The loud pop of a dislocating joint just as you're about to go down on someone is (depending on partner) potentially quite the passion killer.
Thinking about blow jobs has got me to the top of the slope. I stop. Again.
Determined I set off, easier now I'm heading 'downhill'. I get to the garage and I can't speak. Can't breathe either. There's a man kindly holding the door open for me, except I'm too far away from the door and it becomes hugely embarrassing as I just can't move any more quickly and he looks at me quizzically as I stagger towards the open door. I apologise and thank him.
Inside I hold on to the shelves for support. Can't really think. There is a loud cracking/thumping/snapping noise. It's my pelvis. Going back into place. Thank fuck. I whimper and hope I've not pissed myself as it went back in.
The kid working in the garage is bored. It's a long, lonely day and he wants to talk to me, to anyone. I look young. Really quite young and I know he thinks I'm around his age. He asks if I'm ok and embarrassed I mumble about bad hips and choosing chocolate. Really I still can't stand without hanging on to the shelves and certainly can't think enough to know what I want.
I grab a family sized bar of chocolate that happens to be by my hand. I don't know what I did want, not this, but it will do. I pay, smile at the kid, and stagger out.
Bollocks. I've got to get all the way back home. OhmygodIcan'tbelieveIeverthoughtthiswouldbeagoodidea. It hurts. My hips hurt so fucking much.
I'm holding my breath. Clenching my whole body to carry on going. The slope is longer this time. I'm more tired. It's more difficult. More cars go past. A woman and her little girl. I hear them arrange who will pass me first. I worry they think I am drunk until I thank them passing me, clear spoken.
I've got jeans on, tight around my hips and arse, supposedly to hold my hips in. It's not working. I try to have my hands in my pockets and press them against my hips, to stop the bones just swinging out as I walk. The pockets are in the wrong place and I can't push my hands. I feel tears in the back of my throat. Oh god don't let anything happen. Please don't let anyone speak to me. I can't bear to cry. Just want to get home.
I push my hands against my hips, clench up and in with my pelvic floor and push hard for the top of the slope. I'm so fatigued by this point my legs are just swinging backwards making it twice the effort. I lean forwards.
Downwards slope again. Only a few metres. I'm weaving by this time. Writing this in my head. Cursing myself for leaving the house. Admiring the variety of plants that grow along my way. All weeds. Some pretty. I decide I will take the camera next time, take photos along my way.
I turn into my road. I can feel the tears hot on my cheeks, rolling down my face. The pain is white hot, searing like a knife. My hips and pelvis so unstable, muscles so fatigued going forwards is impossible. I sway wildly, swinging in circles, legs hopelessly out of control. I hope not to see any neighbours. I would cry. How to explain to them? The pain. The pride.
Saturday, September 01, 2007
The reason for my being there that day I've long forgotten, but I'll never forget shaking all over as I read the words printed on the page. Feeling sick, the room spinning away from me as I was completely overwhelmed. As I left I asked if I could copy the magazine article, was told I could keep it, they had finished with it.
Once I arrived home I read through the magazine article, again and again. I was in complete shock. I literally couldn't believe what I was reading...someone else like me. So many similarities. Someone else who'd had multiple operations without success. Someone else who had hips slipping out of their sockets, and wore tight jeans to try to keep them in. Someone else who had been called a hypochondriac. Someone else who had been called a hypochondriac. I knew. I just knew in that moment that I had found what was wrong with me, in a journal that my doctors had supposedly read and then thrown away.
Despite that, however much I knew that this was what had been causing all the problems I'd had all along, I was terrified. Like Catherine Brown, the lady in the article I remembered being told I had growing pains as a child, and being called a hypochondriac, but then, over the years things had become far more serious than that. I lost count of the number of times one doctor or another told me that I had nothing physically wrong with me, only psychological problems, that I needed to see a psychologist, and I never understood why if I must be so terribly disturbed, mentally ill even that not one of them ever made that referral. Once there was a psychiatrist, insisted upon by the GP who later laughed when she asked me if it were better to be physically ill than mad. The psychiatrist told me he thought I was brave, and that he wasn't surprised I was depressed, all things considered, but no, not mad...definitely not mad. Maybe not, but I came very close to losing my mind.
I rapidly found the websites for The Hypermobility Syndrome Association and The Ehlers Danlos Support Group, but I was so afraid I did not even have the courage to ask for advice or support from these incredibly welcoming people. But I read. Everything. I devoured what little information there was on both those websites before I went looking for more and I knew. I just knew.
I was reeling. In a state of shock.
The following day I had a physiotherapy appointment booked. The only person who actually believed I had a physical rather than psychological condition was my (NHS) physiotherapist. Unlike the surgeons who once I'd failed to get better told me it was all in my head, and that there hadn't been anything wrong with me in the first place, screamed in front of a ward of people for good measure, this woman was both a professional and a human being. She also knew me, knew how hard I had worked at any task she had set me to do, and knew how much I wanted to get better. I took the magazine and some printed information along to the one person I trusted, and when I got into the room she had the same magazine in her hand.
We both looked at each other, burst out laughing, within seconds I was crying, sobbing, being given a hug, and tears being shed by her too, this woman who'd worked so hard to help me for so long. Unlike my GP's she'd seen her copy of Arthritis Today, read the article, realised instantly how it applied to me and had a 'lightbulb' moment. Maybe I wasn't mad. Maybe. Maybe? I didn't really dare to hope. She really had done her research and had a plan in mind for me to go to privately to see one of the leading experts in EDS. There were a few reasons for going privately, partly that I was so ill I couldn't wait, but more worryingly that we didn't feel any of the GP's at the practice I was with would have provided a referral, or if they did it would be prejudiced with their opinion of me as had happened previously. The other consideration was that even though instinctively I knew this was right, I was all out of fight. It had been so long, with so many doctors saying I was making things up, I'd lost everything. My career, my job, my friends, my relationships, and very nearly my life. Not even my family believed me.
They were however willing to fund the cost of a private appointment and travel to London, not really knowing what else to do. The appointment was arranged for the following week, and the evening before I had to see my GP. During that appointment I was so terrified by what he said to me that had there still been time I would have cancelled the specialist appointment. I was laughed at, told I was lying because I liked the attention. When I tried to stand up for myself, to explain that my physiotherapist expected me to be diagnosed with EDS, that she had made the referral it provoked further laughter. I was told there was no way I had EDS, that I was not hypermobile, that if I was it would have been diagnosed years before, that I would have had problems previously. When I tried to say I had had problems, I was sneered at and told no, serious problems. As I went to leave, every step on dislocating hips a painful struggle I heard further laughter, and the mocking words 'but I'm willing to be proved wrong'
I was terrified. I thought it must be true because this doctor said so like all the other doctors said so.
I must be wrong.
I knew I wasn't. Not really. But I must be. Because this doctor said so. And so did every other doctor.
Later that evening I had to endure questioning from my mother about what I was going to do if (with that tone of voice that said I mean when but I'll say if for now until I can say I told you so later on) I didn't get a diagnosis the following day. I didn't know what I was going to do if I was wrong about this, if my physiotherapist, the only person I trusted, the only medical professional who believed me was wrong about this. I didn't say it but I thought it would probably be the end if I didn't get diagnosed. I knew I wouldn't be able to withstand the pressure of the 'psychological problems' label, with no support from my family against that, and nothing but gut instinct and a body that didn't work getting worse and worse every day to tell me that I was physically rather than mentally ill, I didn't think things looked good if I didn't get diagnosed. I decided that if that were the case then there would only be one way out.
Fortunately that wasn't necessary. I was diagnosed. I couldn't quite believe it. Too many years of being told it was all in my head. They're used to that, those rather special doctors for us rather special bendy people, but even so what happened to me made them go rather pale.
But this is the important bit, the really secret special part. Ssshh. Don't tell anyone. The part that got me through, that kept me going all those long years when no-one believed me, when my body just kept getting worse but the doctors kept saying it was my head instead and even I was thinking that I must be mad if everyone said so. Especially the doctors. You see I always believed that one day I'd find out the truth, and I'd be able to turn around and say, 'see, I told you I wasn't making it up, I was telling the truth all along' and that when that happened everyone would be as pleased as I was, because well, didn't they all want me to not be crazy?
The secret of course is that I was the only one pleased to find out. Everyone else would rather that I had stayed a crazed attention seeking liar because that meant they didn't have to face up to their own mistakes. Because that GP wasn't the only one who really didn't want to be proved wrong.