The People’s Republic of Yorkshire

After the shower of bollocks that was yesterday, I decided that I deserved something nice today.

“Something nice” it turned out was a run up to Harrogate on the bike to buy buttons. I went for the straight shot on the way out, up the A61, which was beautiful – garlanded with copper beeches in autumn colours and with red kites hovering every few miles. Up nearer to harrogate, the trees thinned out a little, and there was ever more wildlife – Two cranes (or possibly herons) in-flight, a herd of deer, blissfully oblivious to the traffic, a hare darting along the grass verge. One of the lovely things about the bike, as opposed to a car (Which I am increasingly thinking of as roadcages), is the smell. Today, it was a mixture of autumn leaves, muckspreading, woodsmoke and curing bacon at nearly every farm, inn, or isolated cottage I passed, and, upon reaching Harrogate, coffee and baking cakes.

My first stop was a rather lovely independent wine shop where I asked for directions, and made a serious mental note to come back when I had more saddlebags and knew what I was buying.

I parked in Prince’s Square, after four circuits of the one way system (Really, Harrogate, you don’t need a one-way system), stuck the parking ticket to the handlebars with a fervent prayer that nobody would steal it, then ambled off to Duttons, wherein I spent enough money on buttons that it was frankly a bit shameful. On the other hand, I did get buttons for my upcoming red suit (Silver, with a red and green enamel heart design on them), my navy blue waistcoat (Square silver piercework ones, similar to the gold ones on my cream waistcoat), my grey double-breasted waistcoat (Fairly plain brass rope-twists) and a small bag of black concealed buttons for Best Friend. So I’m basically set for quite a long time, and don’t nee to buy any more, especially considering the plain fly-buttons and the extra silver piercework buttons that’re on their way from Ebay.

After that, I returned to Prince’s square, sat down outside a coffeeshop in the basement of an expensive tailors’ workshop from which I could see my bike, ordered a bucketful of frothy coffee, and phoned my grandparents. For context – My grandmother was a biker, and rode well into her sixties until her bike gave up the ghost, and she’s been really excited about me carrying on the family tradition (She was a biker, her son -my Uncle- was a biker, I believe her Dad was a biker, rumour was that his Dad was a despatch rider in the Great War…) since this generation so far lacked anyone taking up the mantle. She’s midway down the route of dementia now, but we can still have proper conversations about basically three topics – Dogs, motorbikes, and the Labour Party.

Whilst on the phone, I saw someone get within three inches of reversing into the front of my bike, so sadly the conversation was curtailed as I got up to hoick the bike out of the path of the reversing people-carrier. I then noticed that, if I wanted to get home before sunset, I’d have to get a bit of a move on.

Not willing to get too much of a move on, I got back on the A61 northbound, then turned onto the B6161 at Killinghall and took the long way home over the moors, where there was an impressive array of livestock, all looking rather picturesque under the low, pearly clouds and setting sun. I definitely spotted charolais, limousin, angus, belted galloway and holstein (or friesian) cattle, and cheviot, herdwick and what might well have been whitefaced woodland sheep, though all the whitefaced sheep breeds look really similar when viewed at sixty-odd miles an hour through a midgey-splattered visor.

That road has some exciting curves, and exciting hills, and occassionally both at the same time. Some of them I took in a knee-down-optimum-line-accelerate-through fashion, and some I slowed down to twenty and crawled through. I also found out that at much above a 16% hill, the Marauder really struggles to climb unless it’s in a low gear. And also that it really makes up for it’s lack of acceleration beyond forty by having huge amounts of torque at the bottom end. It’s just a lovely, responsive, happy little bike. And, for some reason, the speedometer sporadically stopped working for about fifteen miles in the middle, and there’s no way of knowing how many miles it’s really done, since the odometer skips both hundreds and thousands when it goes over a bump too fast.

On the other hand, I know that it’s done a hundred and fifty miles with me, seventy of them today.

Here’s to more nice little runs out.

suzukichan

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Loop

So, today I got an email informing me that tomorrow’s tutorial was on the second floor of a building that had no lifts and that I know from experience has heavy doors all over it. It’s also about a quarter of a mile away from the registration point for the tutorial, uphill, and across a busy road.

The email include the flippant line;

” We are very busy tomorrow and you have no students with mobility issues (assuming I haven’t missed anyone!) which is why you are across the road from the [Main Venue] ¬†You will have to get there now via the [Very Far Away] building – this is because the side entrance facing the [Building Where You Register] is having a refurb, reopening in January 2016.”

Oh, thank you, admin person. Thank you for saying “Unless I’ve missed anyone!” at the last minute, instead of asking at the start of the week, in an email that I recieved right at the close of office hours, when it was just slightly too late to kick up a fuss about it. And, indeed, where tomorrow I’ll have to set off so early that I won’t be able to phone ahead to get the room changed, because the university won’t be open.

I mean, it’s not like you could have asked the disabled students’ office to check with me if I had any mobility issues, or even just to take a wild guess that a disabled student with multiple named conditions might have mobility trouble.

Pretty sure that this actually falls foul of the Equalities Act. Also fairly certain that I don’t have the stamina to protest it.

There’s only four tutorials per year, and now I’m going to miss the first one. No way whatsoever that I might have found it useful, anyway, what with my executive function issues and my complete lack of confidence in this course, and my needing a fairly close rapport with tutors in order to get work done.

So, that’s my academic year off to a blinding start. Not to mention that I’ve been in a horrible state for much of the week, have self harmed more than I’m comfortable with, and am probably going to miss next week’s Sisters Of Mercy gig because I’m too panicky.

Fluffy flotsam

Actually, today came good.

  1. Did my taxes first thing this morning, so am now up-to-date on the 2014-2015 financial year.
  2. Picked up my prescription without any hassle.
  3. Got, if not a good result at the GP, at least a non-horrible result, and Dr L2 is really nice.
  4. Best of all, got a post-illness kilometre PB – 14.07 freestyle. Doing 39 racing turns in a row will make you dizzy though.

Hot Milky Hygiene

Dr L2 was really nice, believed me, trusted that my graphs were accurate… And gave me depressingly unhelpful advice. She also said there was no sleep clinic nearby who could take me.

The advice I’ve got – Start my “going to bed” regime earlier, about 10pm rather than near to midnight, and don’t read after that point. Make my bedroom be purely for sleeping in, not for anything else. She seemed to think that my exercise regime was doing me good, so to stick to that. And to stop taking nytol, which I would rather not be taking anyway. She also advised that I get up every morning at about 9am, as I have been doing anyway.

Let me point out what this means in reality.

This means coming home from my swim, and immediately turning off the lights and lying in the dark. With no chemical assistance to get to sleep. I’d shown her the graph which showed that, sans-nytol, I fall asleep about an hour or an hour or a half later every night, leading to occassionally going to bed in the early hours of the morning. This could mean lying still, in the dark, wide awake, until sunrise.

I am pretty sure that this will nuke my mental health, with nothing to do overnight but either ramble through my favourite daydreams (fun) or descend into one of my more usual depression-anxiety-horror spirals.

Well, it’s a month. I can do anything for a month. And this will make an even more interesting graph. Next appointment is on the 11th, also with Dr L2.

For the curious, here’s the whole first month’s graph:

firstmonth

Oh, and I got a Stanmore update – Dr R did nothing in February, other than to mark down that there’d been a fuckup, and Dr L2 reckoned that they wouldn’t be able to refer me out-of-area until they’d been to the funding committee, and made a case for why I personally deserved funding.

So, yeah, all of the time between July 2014 and now has been wasted. She’s promised to get someone to phone me back, soon, about progress with the funding committee.

I have been in pain, howling, life-wrecking, sanity-shredding pain, for the fourteen months since seeing the hypermobility clinic. In those fourteen months, I’ve become almost entirely housebound, and have only very recently started going out again for anything other than completely essential errands. Those fourteen months, in which I’d been clinging to hope by racing to the door every morning to see if my Stanmore admission had been confirmed, have just been wasted.

Fuck everything with a sharp stick.

Ask Lots Of Questions, Don’t Eat The Bullshit

I’ve commented before that most zebras seem to be somewhere near the middle of this Venn diagram, and that I think I’ve only ever met a couple of zebras who weren’t on it at all, especially if I broaden “scientist” to include all kinds of research-and-stats-based jobs;

zebradiagram

(Go ahead, zebras, put yourselves in the diagram. I’ll be amused.)

As much as it could really be that there’s a genetic disorder that strikes only bisexual autistic physicists who cam in thier spare time to fund their research and are writing a novel about the whole experience, I think it’s much more likely that it’s more to do with the bias on who gets diagnosed;

All of the above states predispose the zeb to either asking questions, or to having a healthy disregard for social expectations.

The scientist zeb has a background in assembling data and testing theories, so is more likely to work out that all the Just-So stories add up to one overarching condition, and the medic zeb might even have heard of EDS in the first place.

The autistic zeb is more likely to spot the pattern of symptoms in the first place and to insist on taking them seriously, plus probably already has some knowledge of the inner-workings of the medical system, so will know where to stick the claw to get the treatment or diagnosis that’s needed.

The sex-working zeb has already got a foothold in the door of ignoring social mores and pursuing something which society tells them not to, so is more likely to keep asking the doctor the questions that need asking. And they’ve probably got plenty of people-skills, to make sure that they get answers.

The artist or writer zeb is probably better at explaining their symptoms to a doctor than the average ineloquent sod, and the zeb that works with their hands (including the musicians) is more likely to spot the early signs as their work starts to get sloppy and their wrists start to hurt, prompting them to seek diagnosis earlier than someone who barely picks up a pencil.

Finally, the LGBT zeb has already probably found one community that they weren’t born into (see any number of articles on the LGBT community, which is inherited by finding, vs most communities which are inherited by birth or proximity) so will be quicker to find the disabled community and to integrate into it, therein to find other zebs and put a name to their own condition.

(I’d be remiss at this point if I didn’t also posit that, due to the idea of zebra-senpai and just how friendship groups spread, I’d be surprised if there isn’t a self-selecting bias there based on the kinds of people that I and my firends are friends with anyway.)

So here’s a brief “What to expect if you’re expecting to be diagnosed with Ehlers-Danlos Hypermobility or Joint Hypermobility Syndrome”.

  • You’ll have been to your GP complaining of pain, lots of pain, or will have turned up in A+E with a mysterious dislocation. Either way, (In the case of the A+E scenario, after having reduced the dislocation and sent you home with painkillers) your GP will want to take a lot of bloods to rule out autoimmune conditions (Sarcoidosis, rheumatoid arthritis) and infections. The bloods will have come back “all normal”, so you’ll be sitting in the GP’s office, munching co-codamol by the handful, and they’ll prescribe you an anti-inflammatory (Usually an NSAID), a painkiller to take when the pain gets too much (Usually an opiate, probably either more paracetamol-codeine, codeine itself, or dihydrocodeine), will forward you to rheumatology, and will put you on the list for physio. They’ll send you home.
  • The painkillers may or may not work, and you might have to go back a few times, often over the course of more than a year, to get settled onto a regimen that suits you. Talk to your doctor – Try different combinations of every-day (Prophylactic) and on-demand (PRN) medications. Try different families of anti-inflammatories, try steroid injections, try topical creams. Try opiates as slow-release pills, as patches, as injectables, as syrups, as sub-lingual melts. Try higher doses of weaker opioids, and lower doses of stronger ones.
  • The rheumatologist will ask more questions – This is where you’ll be most likely to do the Beighton Warp and get asked about things on the Villefranche list; How do you sleep, how’s your eyesight, do you get migraines, how are your bowels, do you bruise easily. They might want to do a fairly close examination – I was down to my pants and having the skin over my hips stretched, my legs moved around at odd angles, and my back and shoulders really flexed and put through their paces. Thankfully, most rheumatologists are used to patients in pain, so they’ll do this in a warm room, with a comfortable table, and will be amenable to stopping and taking breaks.
  • At this point, you might get a diagnosis, or you might get sent on to a specialist hypermobility service. The big point of the hypermobility service is to confirm that it is hypermobility syndrome, and to get access to more specialist treatment options if they exist in your area (Specialist physio, for starters) and to suggest referral to services like Stanmore’s hypermobility unit.
  • You might be referred to the appliance or occupational therapy departments who’ll fit you up with splints or braces as-needed, will install grab-rails in your house, and will in incredibly rare cases possibly fund you for a wheelchair. I have never known ANYONE get the NHS to get them a wheelchair though, so if you need one, and can afford it, just buy it. It’ll save you grief in the long-term.
  • You’ll also be getting physio, on-and-off, to deal with the pain and the losses of function. This is where the problems often are. The rheumatologist and the hypermobility specialist will say “Physio, once a month, for the rest of your life, to keep your exercises up-to-date and monitor your progress, and probably spot any minor problems before they become major ones.” The local physio department will say “Six weeks of physio, then, sorry, you can’t just keep coming back, we need to treat people who will get better.” then discharge you.

This brings me to the biggest point about getting a diagnosis and treatment;

  • It’s only the people at the bottom of the pile who will be unpleasant. Your GP will call you a faker and try to convince you that you have a personality disorder, NHS Direct will be convinced that it’s not a dislocated shoulder, your local walk-in service nurse will tell you to go away and be in pain somewhere else – But rheumatology and the specialist hypermobility service will have nothing but sympathy for you. thye’ll listen, they’ll believe you on the worst and weirdest of your symptoms, and they’ll often apologise for the behaviour of their underlings. If you can get past the GP, and have a rheumatologist of your own, you’ll do fine.

This, incidentally, all explains why most zebras who know that they’re ebras tend to be highly-motivated and highly-educated; They’ve got to get themselves diagnosed with a condition that doesn’t present in bloodwork, has symptoms ranging from “My knees hurt” all the way up to “I need to be fed intravenously”, and which in all likelihood their GP has never heard of beyond a brief lecture at the start of first year saying “You’re never going to see a patient with any of these conditions…”.

I firmly believe that the NHS needs to have a complete restructure of how it treats patients with rare conditions.

So, what do we do, as zebras and friends of zebras? Look back up at the title.

Go to appointments with a notebook and a pencil. It makes doctors nervous and commensurately less likely to fob you off with “go away”. Plenty of “Can you just repeat that, so I can write it down?” “Right, so if I phone [service] and say you sent me…” “Why is that an appropriate treatment? Why does [problem] not worry you? WIll it get better on its own? Why not treat the symptom whilst I have it then?” And write down everything.

Provide moral support to friends – If they want you in their appointments, go with them. Doctors are less likely to be patronising and aggressive when there’s a witness, especially if the witness looks concerned; “But [friend] is in pain, and [drug] is helping them. I was really worried about them. Why can’t they keep taking [drug]?” “I can confirm that it really is weeks on-end, I’ve been with them the whole time” and possibly the most cutting and guilt-inducing “Thank you for looking after my friend”.

Arm yourself, and get used to quoting chapter and verse – Memorise the exact details of both seminal and recent papers on EDS, on management of long-term conditions, on drug use and responses to other therapies. Learn what interacts with what, what’s controversial or not supported by enough evidence. Don’t just be a parrot either – You need to understand what you’re citing. if you don’t understand, don’t go out on a limb – You’ll sound more intelligent and confident if you stick to what you do know well, rather than if you try to bluff knowing more about a topic than you do.

Independently check everything that you’re told. X is better for you than Y? Go home and find the study that says so, or says otherwise. Z will go away on its own in a week? Find out from other people with the same problem. Just question everything, and let it be known that you’ll question everything, and eventually doctors will stop trying to fob you off.

But the short version is very definitely just “Ask lots of questions, don’t eat the bullshit.”

The Onion of Accommodation

Accessibility is both fractal and contradictory, and that’s what’s been giving me a metaphorical headache atop my literal migraine lately.

Writing in short paragraphs (or bulletpoints) and using single-clause sentences increases accessibility for people with any kind of cognitive issues.

Writing in concise formats and keeping the thought processes linear is also often difficult for people with some cognitive issues.

Replacing short flights of stairs with long, shallow ramps improves accessibility for electric wheelchair users.

It also makes it harder for people on crutches, since they’ll have to walk much further, instead of the comparatively short stair ascent.

Having the lights and volume turned down low helps people with migraines and sensory processing problems not get overwhelmed by information.

It also makes it harder for partially-Deaf or visually-impaired people to take part.

Using a constantly-turning euphemism treadmill allows people to not have to be faced with upsetting language in their activism.

But it also excludes anyone who doesn’t have the cognitive ability to keep up, and often results in people being branded as bigots when their intent is good, but their terminology is old-fashioned.

My local pool is fantastic – But it has no meaningful failities for disabled people. The disabled changing room isn’t accessible from the poolside (You have to walk, in swimming kit, through a freezing-cold corridor and push and pull open at least two heavy doors), and doesn’t have a locker. The ramp is steeper than 1:12, and there’s no disabled parking.

Against this, though, it has a pool hoist, and every single member of staff is willing to help and keeps in-mind the disabilities of the regulars.

Are they a dreadful institution that should be boycotted until they install a non-dangerous changing room for disabled people (and preferably a sauna), or are they doing their best with limited facilities, and thus should be patronised by disabled people so that they can justify to the council that they need funding to improve?

Reminding the public that disabilities are often painful, life-limiting and distressing gets across that we’re not just lazy scroungers, but conversely it makes the general public less likely to rely on disabled people as employees, partners or friends.

Reminding the public that a life with disability isn’t automatically a miserable tragedy boosts morale in disabled people, but also leads to “inspiration porn” and the idea that it can’t be all that bad to be disabled if disabled people are actors and pilots and successful novelists.

Balance is probably key, as ever.