Es tun mir Weh.

So, i definitely seem to be shedding marbles at an alarming rate. Yesterday I ended up ran completely ragged – Numerous errands, dinnertime swim, housework – then had a horrible migraine that was just stopped in its tracks by Zomig (Which is basically magic, apart from that after taking it I’m completely useless and sleepy).

Then I had a horrendous anxiety attack just as I was going to sleep, and woke up this morning feeling like death. Physically sore everywhere, with that horrible floppy pain in my back that always comes before a really nasty episode of back pain, and suicidal.

So I did the most intelligent thing I could think of, and went for a swim.

Usually, this clears my head and makes me feel better and brighter. Instead, after about 400m I had to get out because I just couldn’t shake the horrible, sick feeling of not wanting to exist. The water was too syrupy, the other swimmers were annoying obstructions, even when they weren’t, and the thought of having to exchange a couple of words at the lane-ends, even to sort out swimming order, was just too much.

I got out, came home, collected the dog from my next-door-neighbour (who is used to my occassional headlong dives into wordless sorrow) and now I’m lying on the sofa and trying to work up the energy to watch Red Dwarf, or something, until Dearest gets back to keep an eye on me.

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Nothing But The Climb

Yesterday’s swim was both fabulous and slightly mournful. I was sharing a lane with a girl of about fifteen, also swimming seriously, not racing, just working hard and keeping her breaks down to a few seconds. When she stopped, periodically, it was evident she was being coached from the stands. Fair enough – I spent enough of my youth swimming at antisocial times with a piece of paper and a stopwatch acting as my coach, and having someone telling you your set really helps.

Upon getting out (Two kilometres, and she’d kept pace the whole time) and getting dried, I ran into the coach – her Mam – in the changing rooms. She said that I’d looked really good, and that my lung capacity must be awesome, since I wasn’t breathing very often in the water.

Not being all that sure what to say, I decided to go with the truth; It was a bad habit, and even if it wasn’t a bad habit, it was a sign that I wasn’t working hard enough (If I was going flat out, I would need to breathe every four, or maybe every two, pulls).

I decided to ask if the young’un was training for County – She was, but wasn’t quite making her times. So she was training first thing in the morning, and last thing at night, on top of the formal training sessions. And then her Mam said something that broke my heart; “She’s just a bit too old to get selected.”

It’s a thing, in swimming. Swimmers get retired young, younger than pretty much any sportsmen other than gymnasts. If you’re not hitting your time targets, progressively faster ones, by your early teens, you’re quietly dropped down the priority list and, well, retired.

Her Mam then went on to give her a small lecture about why my techinique was better than hers, and why she should be trying to breathe less (Debatably, not a good thing. Also, my technique has more than a decade of rust on it, and is modified for hypermobility. Pretty sure that my freestyle arm pulls aren’t physically possible for a non-hypermobile person to copy). I winced a little bit, because parents trying to coach, when they themselves don’t swim, is a terrible thing, and does nothing but add pressure.

The problem was, with the training routine that they had (Assuming that she was getting enough rest and not overtraining – But she didn’t seem to be overtraining) was that her Mam was right. She probably wouldn’t suddenly start making county-class times, since even with perfect technique she was running around the same times as a crippled recreational swimmer (No matter how fit I am, or how fast I was, I’m not swimming at county level, probably not even at county level in my Masters’ group). And it’s just unspeakably cruel – She’s not even in her late teens yet, and she’s being put on the scrapheap as if she’s got no hope.

And that’s what’s going to utterly wreck her love of sport and competition, if something does – That idea that, unless you’re one of the top dozen in the county, you don’t get to compete, and that competing for your team is “loss”. Good grief, I’ve known people for whom competing at county level was a loss and a disappointment.

I don’t know whether it’d help or not to point out that Masters swimming exists, that if she can just keep on training until she’s 18, there’s a massive, friendly world of swimming out there, with competitions and rec swims and people who will always push you to do your best… Or if that would sound like “You’ve failed, already, go and play in the geriatric pool”.

Honestly, though, it’s probably not my place. All I can do is offer to split the lane, give advice when asked, and generally model that you can be happy swimming four times a week without having to compete with anyone.

Sigh. Competitive sports are a cruel mistress, and I have to remind myself of that – It wasn’t my physical health that knocked me out of competition, it was my mental health, and it was pretty much a mental breakdown brought on by the combined pressure of the team, sixth form, work and my other hobbies all vying for space. It’s a shame that by the time most people are mentally old enough to deal with the pressure of competition without going crackers, we’re too old to be physically competitive.

On a less grim note – I contacted the NABD this morning, to ask about borrowing a bike for the CBT. The response was a phone call about two hours later, saying that they could probably lend me a bike for the day, and the three months after it, provided that one was available then. Either way, the bloke on the phone encouraged me to try my CBT in August anyway, since the worst that could happen would be that I failed.

It’s nice to talk to people who are really encouraging. They seem to genuinely care about their members and prospective members – On which note, I am definitely joining.

Fighting Autumn

Basic training is now booked for the 22nd of August, with the same school as last time.

Hopefully, the weather will have held up (We have been getting some nice indian summers the past few years) and my original plan of “Take CBT, pass CBT, buy bike immediately, ride as much as possible, two lessons a month for six months – either on my 125 or Direct Access, then take the full test for the first time about six months after the CBT, then again every three months until I’ve passed it.” will go into action. It’s going to be expensive (One 3-hour lesson is £80, so to do this I’m going to have to drop my other hobbies, like “Eating” and “Washing In Hot Water”) but I have no vices* so I’m allowed just the one.

Right now, as much as Direct Access would be useful, just to open up which bikes I could ride, I’ve got no real ambitions beyond a 125. They’re cheap to run, Ubiquitous Japanese Bikes have basically-interchangeable parts, I won’t be assumed to be likely to race off by other road users, and they’re not going to rip my arms off.

Though one day I will have a Honda CB400F, and it will be crane yellow, and I will love it to pieces.

Paper planes

This is one of those awkward posts that I don’t really know how to make, but I want to make it anway.

There is a movement, mostly online but in the real world as well, called Fat Acceptance. It’s generally speaking, a good thing. Fatness is linked far too much to ideas like lack of moral worth, or unattractiveness, or as a shorthand for “people that we don’t like” – Think Augustus Gloop, Vernon Dursley, or basically any Dickens villain. It’s unfair, and it has far-reaching consequences – Much like having a Geordie accent gives a lot of people the immediate idea that you’re going to be thick-but-friendly and probably inherently criminal, being fat can draw the stereotypes of slovenliness or greed. Doctors, also, famously, often attribute health problems to be caused by fatness, rather than being incidental to, or being an existing condition that’s affected by fatness, or fatness being a symptom of the existing condition. It’s infuriating to see other zebras, who are clearly hypermobile, being told that their initial problem is their weight, not their hypermobility.

(Not to forget that hypermobile people sometimes become fat due to being made sedentary by pain and having their diet restricted to high-calorie junk food by lack of mobility or gut problems)

One of the tenets of fat acceptance is “health at every size” (HAES), which reminds us that people can be healthy at, well, any size. To a certain extent, this is true. I know enough people who tip the scales as “overweight”, but upon losing weight they feel awful, no matter how carefully they do it. Likewise, if I’m more than a few pounds outside of a fairly tight range of weights (on either side) I either feel bloated and sluggish, or fatigued and sore. People can be healthy at many sizes, but not every person can be healthy at every size.

Some of the stereotypes attached to fatness are also attached to disability – The idea of being lazy, or of having “brought this upon yourself”, or of being unintelligent, or sexless, or of not caring about your appearance. I could draw an interesting Venn diagram there, and I bet that more things would fall into the overlap than into the discrete sets. So, of course, being both fat and disabled will draw a double-portion of unhelpful stereotyping.

There’s also a lot of natural commonality between fat acceptance, and body positivity in the disabled community (cripple acceptance?) – Both are to do with accepting having a body which society doesn’t usually consider desireable, both involve accepting the body’s limitations and modifying clothing or behaviour to make them more accessible (There’s a parallel to be drawn between anti-chub-rub thigh-guards, and jackets cut short to accommodate sitting in a wheelchair most of the day).

But one place where HAES and I disagree is on the subject of hypermobility.

Hypermobile people just have terrible connective tissue. Our collagen is soft and stretchy and doesn’t do a very good job of holding our bones together. As such, we have to be light. Not just “not overweight”, we have to be thin. If we want to put on muscle, we can’t put on too much muscle, because the weight of it will put too much stress on our joints. In the words of one consultant “You’re going to have to be the fittest person you know”.

Note that as well as overall fitness, we’re talking about total weight. It’s not rocket science – We only have a certain amount of connective tissues, and they don’t “scale up” neatly like muscles do when we get bigger. Much like putting a 5kg weight on a spring will stretch it out faster and further than a 1kg weight, or how a heavier weight will be more likely to rip through a suspended paper towel than a lighter one.

A doctor is not just being fat-shaming when they say that, in the context of hypermobility, a patient has to lose weight if they want to improve their quality of life. I’m not saying that there’s a moral imperative to be healthy, but I would strongly suggest that it’s always worth trying anything that’s not got a massive side-effect burden if there’s a chance of it improving things.

And that’s what’s toxic – We need to decouple the general “Health as moral imperative” and “Concern-for-health as shorthand for aesthetic qualms” and “Societal use of fatness as shorthand for all ill-health” from the very real reality of “More weight on damaged joints will damage the joints even further, quickly. Otherwise, the very reasonable cause of general fat acceptance can end up obscuring the also reasonable cause of “In the case of this specific illness, this medical advice should be followed”.

I wouldn’t say this, but I’ve seen other zebras say “I need to lose weight, for my joints” and be bombarded with messages of fluffy negtivity, saying things like “Your doctor is just fat-shaming you”, “The only reason to want to lose weight is because the media wants you to” and the downright untrue “Your weight won’t affect your joints”. And I don’t want my fellow zebras to accidentally make themselves more ill, when they wanted to try something to help themselves recover. Any attempt at showing solidarity to the original zebra (Even something as innocuous as “Good luck, hope that it helps, remember to exercise gently at first”) can get you piled on with cries of how oppressive you are and how much you’re hurting people by suggesting that having less weight on a painful joint will make it hurt less. I’ve also seen it described as disablist to say that one of the most effective palliative treatments for hypermobility is exercise, even though that’s just true. Your connective tissue won’t get stronger, but your muscles can, and strong muscles can stabilise lax joints better than weak muscles.

I worry for the community if magical thinking ever outweighs observation and experience. No ideology, however well-intentioned, is worth risking someone’s health for.

The Chariot

Despite having a really rough time at the minute, I’ve decided that I’m going to try to book in to take my compulsory basic training again at some point before autumn, on a private day, and with the proviso of “I will go slowly when I need to. I will have lots of cups of tea. When I need things explained five times, you will do so.”

I may get in touch with the NABD as well, and see if they’ll send a representative to help me out on the day with thinking of how to adapt both movements and the physical motorcycle itself to fit me better.

I’m swimming regularly – My health is a lot more stable than it was in May, and my energy levels are higher, even if I am depressed and hopeless – so I’ve proved to myself that I can keep small deadlines and work myself hard for periods of time. All I need to do is focus, and get it done. The instructor even said that there had been a previous client who had come back half a dozen times, always nervous, never quite able to get out on the road, bad sciatica that made her unsteady, and then one day she’d had a “click” moment and had been off so fast andd fluently that he was having difficulty keeping up.

I could have that sort of moment. I’ve definitely had them before. Three years of rambling at sculpting and making no progress, then made a couple of tweaks, and suddenly I could. A year of sewing functional-but-uninspiring junk, and then something clicked and I started turning out things I was proud of.

If I’m not riding again within a year, I will eat my hat. And I have plenty to choose from.

The Hundred Days

There’s a lot of metaphors for depression, but right now I want to talk about it as if it’s water. You’re standing on a beach in spring, it’s not warm, but it’s a bright day and you’re enjoying the sunshine, in shirtsleeves and bare feet. Sometimes, when you’re walking around, you accidentally put your foot in a rock pool or the sea itself, and your foot is suddenly cold. It shoots through you, and instead of feeling just the right temperature, you feel cold. Not just your foot, your whole body. And it takes a while to warm the foot back up, even when you’re sitting back on your towel. You remember getting your foot in the water, you feel cold, for a lot longer than you’ve actually been wet for.

If you fall in the sea, you are immediately cold and wet – You don’t remember how nice and normal it felt when you were dry, but when you get back out, you shiver for ages after you get dry again. You look around fearfully for signs of it starting to rain. You’re cold, and the slightest breeze feels like it’s going to send you straight back into shivering in a towel rather than enjoying your day.

I’ve been fragile all year this year, pretty much since my suicide attempt at the end of September, and being in more pain and panic than usual as my coil malfunctioned and I ended up needing hospital treatment, along with the hormonal wreckage that came with it and knocked my usually-stable feelings about my body and gender off their axis, and the re-election of a government that’s actively trying to kill basically everyone I love, and any number of family and friend related things which I refuse to detail here since they’re not my story to tell. It’s been a shit year. I’ve self-harmed probably more than I have done in years, I’ve had more down than up, and I’ve finally accepted that there’s no point in going back to any kind of mental health services, since I’ve tried every family of anti-depressant on the market and they’ve mostly made me worse, and tried all the therapies I’ve been offered, which have either run their course, actually done me harm, or been inappropriate due to not being able to understand that physical health conditions are a barrier to the “Have a nice cup of tea, go for a walk, then have a bubble bath” school of thinking.

Not to mention that by the time I’m at the point of referral, a cup of tea is basically ash in my mouth, a long walk is a tour of all the bodies of water I could drown myself in or trains I could thrown myself under, and a bubble bath is somewhere to make the veins more visible.

And now I can feel the seasons changing. It’s early, but it’s already feeling darker and more golden outside, and that’s bringing on the start of my seasonal problems. It’s as if I missed summer this year, never quite getting the mood increase that goes with sitting in the sunshine and spending all of my time at the pool. This might be the worst part – Where I feel the last of my energy sapping away, the desperate clinging to ritual (Swim every day, make tea with real leaves, eat cereal with oat milk, go downstairs to watch TV) as all desire to do even that tiny amount of stuff drains away and I go into complete hibernation until late February. It’s terrifying, knowing that for the next six months or so I will be piloted around like a drone, with no way of making it better other than the familiar refrain of “Just hang on until after Christmas, you always pick up in the new year”.

Being at the mercy of my own terrible brain chemistry, that can make a long train journey into a fascinating daydream, then turn a long-awaited break in the monotony into nothing more than a horrible chore that I want to hide from, isn’t fair. Especially when I can’t sensibly take refuge in my physical or mental abilities, whether because of pain or exhaustion or simply not being able to concentrate.

This isn’t a life. Stealing two dozen bearable days in a year, in between either conciously recovering from or plummeting headlong into utter bleakness, and being physically trapped in my house by pain, isn’t humane.

I don’t know what to do. I can’t go on.

Just So Stories

Before I was diagnosed, I had a lot of things about me that were just odd. Really unusual for either someone my age, or just humans in general, and they all had “explanations”.

I call them the Just So Stories, since they work a bit like Rudyard Kipling’s stories of the same name – They give a reason for things being as they are, with no factual basis, but they sound plausible to a child because they’re internally consistent. And since EDS, before it becomes painful and symptomatic, is made of a dozen tiny non-symptoms, there were plenty;

My nose was always crooked, even before breaking it multiple times as an adult, because a nurse had to break it to fit a feeding tube when I was a baby. (Actually, it’s what a deviated septum looks like from the outside, which is really common in EDS)

Likewise, one nostril was bigger than the other because of being on a ventilator for so long. (Actually, it’s all part of that EDS deviated septum)

I had striae basically from birth because I was premature, and then because I grew so tall. (Actually, it’s another external manifestation of tissue fragility. No matter how slowly we grow, our dermis rips like wet tissue paper)

I failed to finish meals and then ended up eating between them because I was lazy and easily distracted (Premature satiety and sudden ravenous hunger are common in EDS due to problems with the stretch receptors in the stomach, and delayed gastric emptying.)

My veins were all very blue and visible because being on a lot of IV drips as a baby made them rise up to the surface (They’re not that near the surface, but EDS skin is unusually translucent. You can also see the margins between muscles and tendons as light and dark patches)

I had growing pains right up to my mid-20s because I was so tall (Stop right there! True “growing pains” aren’t growth-linked and should stop by age 12. They’re also more common in hypermobile and active children anyway. The pain I was feeling was the pain of walking on hyperextended knees and often subluxated hips.)

I had back pain my whole life because I’d fallen off a horse when I was young, and never been to a doctor (Actually, it turned out to be three slipped discs and a trapped nerve, due to the connective tissue around the spine being so weak).

I walked with a slouch because I was lazy and undermotivated (My spine is unusually curved, giving me a dowager’s hump from my mid-teens, as well as scoliosis. All common in most EDSes).

My handwriting was terrible because I was deliberately being difficult (I have no sense of proprioception, and writing for more than two or three lines has always made my hands cramp and wrists subluxate. Pretty much diagnostic for EDS).

I was always constipated because I found going to the toilet boring, and it was a reflection on my character that I didn’t have the patience to digest normally (Slow gut transit, with the associated constipation or impaction, is common in EDS and usually shows up long before the joints start getting too painful.)

I was always covered in bruises because I was clumsy and careless and didn’t look after myself (Again, fragile tissue. I could brush my hair too hard and bruise my scalp).

I was always exhausted, and suffered from terrible insomnia, because I thought it was “cool” to stay up late (EDS messes with the adrenal glands, so insomnia and disturbed sleep, or odd sleeping patterns in general, are de rigeur.)

I was a terrible runner but a great swimmer because I wanted to be different (Or we could take another look at those hyperextensible knees and the pain that goes with them).

I said that getting teeth pulled was painful because I was hysterical (It’s now been proven a few times that, like a lot of  zebras, I really am completely insensitive to *caine anaesthetics, so I really did have four teeth removed and three root canals with no anaesthesia before the age of eighteen. And people wonder why I’m frightened of dentists until they prove that they’re not pliers-jockeys.)

I was depressed and lethargic because I had no sense of perspective, and there was no such thing as depression in the trenches (Actually there was, they just called it shellshock and they sent people back to Blighty for it. And the same EDS-realted adrenal fuck-ups that cause sleeplessness also cause anxiety and depression, which will be made a lot worse by everyone around you telling you that you’re not in pain, not exhausted and not depressed, when you clearly are.)

…And that’s just a few of the ones I was told, and in some cases which I was forced to believe, even though I had direct knowledge that they weren’t true – Particularly the ones about my mental state. Really, no teenager will subject themselves to sleeping for about three hours a night for five years just to seem “cool”.

If you have a child who seems to have a lot about them that’s odd, stop relying on just-so stories. Don’t assume that everything has a trivial cause, or tha things are “just so”. If the child is suffering, just take them to a doctor. If the child has a lot about them which doesn’t cause immediate problems, but which is obviously “not right” (Again, children really don’t usually develop whole-body stretch marks before puberty) take them to a doctor.

it’s not a sign of weakness, it’s not being a bad parent, it’s just that sometimes being safe is better than being sorry.