Normal people.

I eventually decided that I would go to the support group meeting today, and that I’d make a bit of a day of it – Go in early, pick up some beads for making a necklace with, sit in a coffee shop with a book for a while, then go to the meeting.

This, bien sur, went badly.

I started the day feeling a bit depressed and antisocial, as I often do – I woke up in pain (Hips screwed up, back aching and weak, head pounding) and after taking a bit of morphine and having a nice hot shower I didn’t feel much better; Mostly deeply apprehensive about the absolute clusterfuck that always seems to happen when I try to leave the house on my own. I wanted to do nothing more than keep taking morphine until I was completely docile, then spend the rest of the day listening to Robin Trower and feeling utterly sorry for myself. Dearest was out at work, but finishing some time during the afternoon, and could pick me up if I wanted or needed to come home early, so I decided that the most sensible plan of action was still to go out as planned, with the option of getting a lift home from Dearest if needed.

So I went out. I got on the bus, took my time crossing town to go to the bead shop, then went and sat in the coffee shop next to the university with a big carton of iced coffee and a book. I then realised that sitting on a coffee shop on a fine spring morning, people-watching and reading a novel was something that I used to do fairly regularly. And right now, it was the highlight of my year. Lo, the burst of self-loathing and fear set in, and I panicked. There was no way I could go to the support group, I was a boring, pointless human being that should just hurry up and starve to death.

I finished my coffee, sent a text to Dearest saying “Yeah, fuck this, text when you’re finished work and I’ll meet you at the car” and then started walking up towards the group anyway, planning to show my face for a few minutes, then leave as soon as Dearest texted me, which would be in about half an hour.

So off I went up to the rooms where we’d be meeting, a converted church and its surrounding buildings. There was actually a wedding party, presumably from the town hall, in front of it, having pictures done with a gorgeous old Routemaster bus that’d been repainted into black and white. By the time I got to the front door I was shaky and hurting all over, and there was someone outside pointing people around.

“Are you here for NA? Narcotics Anonymous?” he asked. I replied that I wasn’t, that I was there for the Ehlers-Danlos Syndrome meeting, which he denied all knowledge of.

“Please” I asked “Can I sit down inside anyway? I think I’m about to faint, and I’m quite scared”

Now, by this point I was obviously grey and having muscle spasms, and in a lot of pain. I had my stick on me, I’d just asked the way to a disability support group meeting, and I am not ashamed to say I was actually beginning to cry purely from physical exertion.

“Definitely not here for NA?” He asked “Just I have to lock this door.”

“No,” I said again “But please, can I come in and sit down and have a glass of water? I’m going to pass out, and I’m in a lot of pain.”

He slammed the door in my face. A couple of seconds later, I blacked out.

Whilst lying on the floor semi-conscious, I heard three voices; first a man’s- “Oh look, another one down on the ground”, then two women talking together, one saying “If I ever get as pissed as her, God, kill me.” and then a tiny toddler voice of “Mummy, why is that man lying down?” which got no reply that I could hear. I faded in and out of consciousness for a bit, and then finally came to enough to drag myself upright and get into my bag to get out some salt, morphine, and pickled ginger. For whatever reason, eating something when I’m in pain is always restorative, and the salt was to mediate the blood pressure drop that’d caused me to faint.

I sat up, then stood up. The wedding party was still going on. There were at least forty people within sight who’d seen me faint and struggle back to my feet. This time, I decided to try the second door, down a small side-passage and in the more modern building. I was greeted by someone who I later found out was the centre manager (And who’d parked her car in the disabled bay, with a jaunty “I’ll move it if anyone needs it!” which I pointed out was “The rallying cry of the complete arsehole”, which at least raised a laugh).

I explained to her what had just happened – that someone else in the centre’s staff had just slammed the door in my face and locked me out, leaving me to pass out in the middle of the car park, and she apologised profusely.

“Oh, well you know, they’re just so used to dealing with the addicts and complex cases and service users, they get a bit like that.”

I raised an eyebrow. “Well, I do look more like an addict than a cripple” I said. She looked abashed.

“No, no, of course you don’t. They just have to spend so much time talking to junkies and schizos – who just need to be told “NO” – that they forget how to talk to normal people.” Of course, if a ‘junkie’ or a ‘schizo’ is about to faint from pain and exhaustion, you should just slam the fucking door in their face, apparently.

Thankfully, with the bits of tarmac in my face and my skin flushed already with morphine, I don’t think it was obvious that I was increasingly, depressingly angry. I nearly turned around and left again, but instead I quickly ducked into a toilet and cleaned myself up and calmed down.

I got into the meeting room and was greeted with open arms by the coordinator, LSB, whom I’d met before, and she sat me down next to the woman she’d just been talking to and introduced us. We got to chatting (The official theme being “Coping day-to-day”) and it was really nice – We swapped stories, the frustrating bits, the good ideas, the things we both wondered about (Did you know that the NHS now offers Silver Ring Splints as well as Oval-8s? I didn’t know. No use to me, but use to someone. they also do a thing called Personal Budget, which allows you to pick more of your own orthotics and stuff) and generally had a nice chat. After half an hour, LSB got us to move around again and talk to some other people – this time a small group; A woman in a wheelchair, and her husband, and a mother and daughter who were 2/3 affected in their family (the two bairns being 11 and 4, and both bendies). All with similar stories, all sharing and generally having a bit of relief in being around people who really got it. There was a bit of a gasp from all involved when we played “Guess each other’s ages” and I turned out to be 28 (the median guess had been about 17) and it really is true that bendies tend to look young for their age. The girl seemed actually really pleased to see that we were all around and happy and socialising normally – I imagine that it must be terrifying to be that age and not sure what adulthood is going to look like.

I got the text from Dearest, and I said “Oh, go on ahead, my day’s improved”.

I spoke too fucking soon.

Then, an invited speaker stood up to take the floor – A doctor, and the husband of one of the attendee zebras.

He was everything that is wrong with medicine, with people trying to lecture without knowing how, and with people being unwilling to admit when they have no idea what they’re talking about. He was patronising, incoherent, offensive, incorrect, and too fond of his own voice. he also name-dropped having met Prof. Graham and Prof. Bird in a way that people who are genuinely confident in their research wouldn’t. He also called us all “Lovely ladies” and “Nice girls” a lot, and said that women were “Crazy for one week a month anyway”, which is not a good way to get people onside. Later on, he was really touchy-feely (as in, grabbed and hugged from behind) someone whom he’d just met that day, and who pretty obviously didn’t want to be touched by him, and who kept trying to pull her (heavily braced) hand back from his. My hackles were pretty instantly up.

Firstly, he claimed that we were all ignorant and that we didn’t know what EDS was. Then he tried to explain genetics;

“A woman’s chromosome is longer than a man’s chromosome. And the bit that makes EDS is on the long bit, that the man doesn’t have, so it’s very rare that it affects men.”

My hand went up;

“So are you saying it’s a single gene, and sex-linked? Have we found a single gene for EDS-HM? I thought that nobody was sure what the mutation was that caused it. I know we’ve found one for EDS-4, but isn’t that why there’s no genetic test for hypermobility, and that’s why we get a diagnosis of exclusion?”

He just sort of looked at me blankly, then said “It does have something to do with gender. It can skip a generation, or lots of generations. DNA doesn’t forget. You see, it’s autosomal, and that means that even if neither of your parents have it, you can have it. You never see a blue-eyed Chinese person.”

I tried asking my question again, using various different formulations of words but all trying to ask the same thing; Why did he think that EDS was sex-linked, but didn’t have the same mechanism as any other sex-linked disease (Where, generally speaking liestochildren, males are more likely to be affected than females, due to only inheriting one X-chromosome and thus not having duplicates of those genes – meaning that any recessive gene would be expressed.) Of course, if it was a single dominant gene on the X-chromosome, males would be unable to inherit it from their fathers, but still have a 50% chance of inheriting it from their mothers. This is all irrespective of the fact that, at least according to basically every paper published, EDS is caused by a variety of mutations on a variety of genes, differing depending on the type (Classic, HM, Vasc, Kypho, etc), whether it’s a spontaneous or an inherited mutation, and a bundle of other factors.

I got no answers. This would have been really, really useful, if he’d had something useful to say.

He then started claiming that GPs weren’t doctors. Now, I know that they don’t, usually, have PhDs, but he wasn’t interested in clarifying that, he was only interested in saying over anddd over again that they weren’t doctors, and that someone would have to teach them about EDS. And then telling us that we couldn’t teach them about EDS since we didn’t know what EDS was because we were ignorant (And, well, in a roomful of 23 EDS patients and their friends, you can’t make that generalisation – We are usually a fairly motivated and educated set of patients, since we have to be in order to get a diagnosis).

He then tried to explain what EDS was, and “that it all started when you were in your mummy’s tummy” and that it was something like a roulette wheel, where the reds were the tissues and the black were the bones, and the white bit was EDS. It all got a bit confused, very quickly.

He then said that the only way to “prove” EDS to a doctor was just to be sure in your convictions. He pooh-poohed the idea that most of us had, which was that the best way to prove it was to show them a fresh dislocation, or a hyperextension. By the way, this doctor didn’t have and form of EDS, though he had had polio, and since that had also been called a “malingerer’s disease” that made him an expert. But what authority he actually had to contradict a roomful of people telling him their own findings, and to tell them to stop doing the thing that works when talking to doctors and to start doing the thing that we used to do that would get us told to go away and stop being hypochondriacs… Yeah, no.

He then asked what the first presentation of EDS was; Considering that this was a room basically full of hypermobile people, the answers were “pain” “bendy” “fatigue” “clumsiness”, with a couple of brave “gastropareisis” and “constipation” thrown in. He again contradicted everyone, and said “It’s skin. It’s always the skin, because it’s connective tissue and it’s the biggest organ in the body.” – Of course, a lot, maybe most, of hypermobile EDS people don’t have much skin presentation at all. And earlier on he’d been trying to say that it was something like spinning a roulette wheel as to which symptoms you’d display and which you wouldn’t.

He then reassured us that we “Weren’t like those psychiatric patients with something wrong in their heads.” and that we “Weren’t like the crazy people, we were normal people”. At this point, he started staring at the oozing ten-inch-long cut on my forearm, which had had the scabs knocked off it as I fell earlier. I wasn’t about to put my coat back on (the room was boiling) so he gave the rest of his talk directly to my obviously self-harmed forearm, until I cracked under the weight of shame and left the room for the world’s longest toilet break.

When I came back, everyone was back to niceness and talking about arranging a fundraiser. That was more like it.

So, all in all a bit of a mixed day.

And about the EDS support group

I’ve just realised that I never mentioned anything about the weekend – The EDS group, and my tutorial.

 

The group was actually really refreshing – I felt like the least middle-class person there, in fact like the only person there who was below the poverty line, which made me incredibly uncomfortable (All the stuff about middle-class vs working-class discourse very much holds true), but it was nice to be around other people who understand the nature of the beast and to be in a forum where there’s going to be discussion of EDS-related issues in a sort of structured fashion. Sadly, it’s all arranged via Facebook, so I’m not going to be as much a part of it as I could be, but it’s a start. There was also a bendy there who was at least 65, so I’ve also met my first older bendy, and that was quite a hopeful thing – On the one hand, I’m as ill as her, on the other hand, I know that it’s not guaranteed to be one long downhill slide.

 

Tutorial was also good – My tutor is really impressed with my work so far, and is going to make accommodation for me in the exam. I’m getting the Disabled Student’s Office to visit my house next week, to sort out exam arrangements and things. And I’ve bought a book and soon to get a boardgame about German grammar – I’m actually kind of sad that I’m coming close to the end of my formal German education again; It’s been three more years, after the first three at school many years ago, and I just feel like I’ve barely scratched the surface. I want there to *always* be someone setting me little problems to translate and write and play with.

Anyway, my right hand is tearing itself to pieces, so I need to take a break and maybe start on the Baclofen. Wish me luck.

And so, we wait.

My speech to text programme is basically saving my life right now, since without it I’d not be able to communicate at all.

 

I spent yesterday in bed, slipping in and out of conciousness (80mg of morphine, 6mg diazepam), incapable of function thanks to the sedating effect of the analgesics and the antispasmodics, but still in pain. Eventually a friend came over and picked me up, relocated my hips and shoulders, then my partner came home and fed me and spent the rest of the night looking after me.

 

Currently watching a programme about mobility scooters, and they’ve just mentioned “palliative care”. A woman in her sixties, saying that it feels wrong that she’s only recieving palliative care, and that that means she’s got nothing to look forward too. Another is in her thrities, more like me, vey depressed by her condition, but desperate to keep trying. I’m recieving palliative care too – the best they can do is keep me comfortable. Getting better is all down to luck, and remembering to do my exercises, and not getting too despondent. There’s an older chap as well, and he basically regains some indepenence by getting his mobility scooter, and that makes me kind of happy- That there IS something that can be done, sometimes.

 

Anyway, tonight (I’d nearly forgotten) is a meeting of the EDS society. If I go, it’ll be my first one. I’m currently a bit terrified to go, but on the other hand, it’ll be good for me. Probably. I don’t really know. I’ll report back, anyway.

 

Tomorrow is my Open University German tutorial as well, 9am at the local polytechnic. My tutor knows that I might not make it, but she’s agreed to send me the handouts and do an online tutorial for me if I can’t.

 

For now, I have homework to do.

 

Oh, and a bit of good news as well;

Image

Just a reply saying “We’ve got your complaint and we’re going to look into it” but it’s a start.