““The strips were sorted into colours. One end of the rag was pushed through the hessian with the aid of the clothes peg. The other end pushed in about two strands of hessian further along. Patterns were varied but because the mats could be a fair size and we didn’t know what and how much “rags” would be available, an assortment of different colours were missed together…The similarity between a clippy mat and our lives became evident. There are bright areas and dark areas and subtle shades in between”. “


– Rita Henderson


I think she’s right. I had a bit of a cry yesterday morning; I found a memory card which basically records the last year and a half. Copper beeches in autumnal colours outside of my best friend’s old flat.  Getting ready for a trade fair, Victorian dress and combat boots, with a full-sized railway trunk of clothes balanced on my shoulder. Photos of a walk through Leeds before dawn, with ice in the canal and snow on the groud. Myself in a wheelchair, in Weimar in the dog-days of summer. Leaning on a car, on crutches, at new year, the furthest I’d travelled in months.


Hard to look at. But I’m getting used to it. Swim three times a week. Exercises every day. Take my medication. Hope.


It’s been around thirty degrees lately, so I’ve spent as much time in the water as is physically possible. My lovely local baths, built in the 1920s and conveniently less than a hundred yards from my front door, have been my salvation all week. And it’s a good habit to get into, of going swimming as often as I can manage it – Two or three times a week at best, to go with the reccommendations of the hypermobility clinic. And with it being so close to home, I can feasibly go for a ten-minute swim, or a half-hour swim, or decide at 21.00 that I want to catch the last session of the evening, and be in the water by 21.15. It’s a proper “old fashioned” pool timetable, as I would describe it; Closed to the public for all but a couple of hours a day, since the water is taken up by swimming lessons and the competitive teams and a synchronised swimming troupe. There’s an adults-only swim every weekday at 12-13.00, and again on Monday and Tuesday at 21-22.00, with a ladies-only session in that slot on Thursday, and a general-access laned swim starting at 20.00 on Monday and Sunday, finishing at either 21.00 or 22.00. I daren’t go to the un-lane swims, as honestly my relentlessly swimming laps is probably antisocial if people are trying to bob around in the water and float.


There’s also a disabled swim on Sunday afternoon, which I might go to, but that’s a whole kettle of fish.


I’m disabled – there’s increasingly no getting around that. I walk slowly, get fatigued quickly, am never far from a bottle of morphine or my splints. But in the water it’s pretty much invisible – I still swim with the same technique as I did ten years ago, and although I’ve lost a lot of the raw power that I had, the techical ability is still there. I casually overtake healthy, ablebodied people trying their hardest, at my comfortable cruising pace. I am genuinley more fluent at moving in water than I am on land.


And this upsets me sometimes. Having to get out of the water, and have new friends that I’ve made find out that, in the real world, I’m crippled (And sometimes they’re fine with it, and sometimes they’re really awkward) Having lifeguards remark “You’re so agile/graceful/strong in the water; You’re like a different person!” (And they all do this, every time) Getting the pitying eyes as they’ve had to syringe my medication into my mouth, strip me out of my swimming kit, and towel me off like a child (This happened yesterday, it’s still raw). The emotional whiplash between the respect, fellowship and admiration that people have for me when I’m in water – People asking me for tips on improving their own technique, complimenting me on a good session, or even just swapping exhausted smiles over a waterbottle as we cool off at the end of a lane – and the abject pity, revulsion and fear that people have for me and my body when I’m poolside – What happened to it? Is it going to break? Can it understand me? What does it get from coming to the pool? When it can barely walk, so obviously there’s no way it could swim.


Sometimes I feel like propping my crutches up on the diving blocks, then turning in a 68s 100m freestyle is a revolutionary act. Nowhere near my personal best (55.5s, short course) but still enough to remind people – And especially myself – that my life is something other than pain, confusion and hospitals.


Speaking of hospitals, I have an appointment at StJ’s rheumatology on the 24th of September (Booked before my UCLH appointment, to be a coda to it). Let’s see if I can get that far without needing more doctoring.


Well, it’s been a quiet week on the medical front – No new appointments, and now as far as I can see I’ve got none booked in. So I’m kind of winging it, with nothing to structure my life at the moment. Today, the representative from my university’s disability-access company came around, and fitted me up for a couple of ergonomic workstations – One over my bed, which will be a ramp for my torso and a lap-desk to let my laptop float over my legs, and the other for the chaise longue, which will be a sort of old-fashioned tray table. And a wireless keyboard. And now that’s done.


This isn’t how I would have chosen to live my life, but after a while the routine of GP/referral/specialist/physio/care plan/GP/referral… becomes THE routine around which life gets based. Everything else is secondary to it, because seeing the correct doctor is more important than basically anything else, and almost anything in life is more flexible than NHS timetabling.


But now I’m kind of free of it, at least for the moment. I’ve done some sewing. I’ve found a couple of operas that I want to go and see (La Traviata and The Bartered Bride being the ones that really stand out). I’ve started making a batch of kimchee. My next-door neighbour has given me an old mechanical till, which I’m in the process of trying to figure out how it works and thus how to repair it.  It feels nice to be just being me, but on the other hand it feels like the elastic band that had been driving me through all of the trials and tribulations recently has just sort of snapped.


My current “plan” on the health front is to do my exercises three times a week, to use a Powerball for 10-20 minutes a night (to work on my wrists and hands), and to try to swim once a week.


And of course I still have German to do and paid work to work at. So maybe I will be busy.

Far Side Of The World

London, as expected, was one long punishment. It was made up for by UCLH being brilliant, and by the restaurant that served amazing coconut chutney and dosas.


So this is a post of two halves;


First, THE BAD;

The night in the hotel was terrible – I had the choice between an incredibly room that would get no cooler than 22 degrees, and having a load of even noisier desk fans pointed at me. I slept for an hour and a half, finally getting to sleep at around 4.30 before waking up to watch the cricketers warm up at 6 (England vs India test, day one. Alastair Cook looked about as fed-up and over-warm as I felt, poor boy), checked out by 7am, and sat on the lovely breccia specimen in front of the hospital until about 8, when I met up with A who was going to help me through the appointment and getting to my train afterwards.

Yesterday was basically the hottest day of the year. It was thirty degrees by the time I got out of my appointment at eleven, and only got worse. I ended up hiding in the British Library cafe for most of the afternoon, in basically a dead faint under a table, and then in the First Class lounge in King’s Cross for the rest of the time. As we got from place to place, I did literally faint about every hundred yards, including once which resulted in me having to curl up in the foetal position around a dislocated hip in the middle of the new King’s Cross concourse (Gorgeous building, by the way). By this point, I needed the wheelchair, and the porters were not only unhelpful, but all of the worst stereotypes of interacting-with-the-disabled; Treated me as if I was insensate and incapable of making decisions, talked to A about me as if I wasn’t there, ignored my telling them that they had to be careful when crossing rough ground (And managed to injure me by trying to bump the wheelchair over the platform-edge studs).

But I got home safely (No porter waiting at Leeds, even though they claimed there’d be one), crawled into bed, and woke up this morning feeling like death – Spending so much of yesterday dehydrated means that today I feel utterly, utterly sick.



Huge progress has been made, and I have been reassured greatly.

1 – An angry letter is being sent to CA, from the hypermobility clinic, telling them to take me back on for physio, and instructing them to give me a full programme of exercises to take home.

2 – I’ve been given licence to think of swimming, sauna and sports massage as Sensible Therapy rather than Decadent Indulgences, so I’m going to start doing that a lot more.

3 – The importance of pacing has been stressed, again; To not only stop before it hurts, but to stop long before I want to. Her exact words were “Write out your 52 week plan, then have someone less-motivated cut it down, then cut that in half, then cut that in half again. Then stick to it.”

4 – Dr P didn’t want to “test” me. My big worry was either hurting myself in demonstrating dislocations, or in baing hurt by being roughly manhandled. She was absolutely spot-on on the issue of consent, always demonstrated movements on my “good” side before trying them on my “bad” side, reassured me on things which I had which would be an advantage (Well-preserved foot arches, strong ankles and thighs, lots of muscle over shoulders and chest) and generally focussed on positives rather than negatives.

5 – I’m being given a “Physio pack”; a novel-length set of instructions, which I have been told to take photocopies of to every new physiotherapist, OT, GP and medic for the rest of my life.

6 – I’ve been told to pick and choose what information I listen to, base on instinct. Dr P said that I seemed to be good enough at critical thinking to know which bits of information from medics I should ignore, and which I should value. Making myself the co-ordinator of my own treatment seems to be a good idea, in her view. I agree.

7 – I’ve been referred to a local pain management physio, to help to manage my treatment here. I was offered one in London, every two weeks for ten weeks, but as I said, I couldn’t afford to pay something like £300 every fortnight to commute in.

8 – I was offered one-off physio for 2 hours in London, which I have kept open as an option.

9 – I have been put on the waiting list for Stanmore’s inpatient programme; One to three weeks of intensive physiotherapy, pool time, and generally alternating between hard exercise and bed rest. With doctors and orthopaedics and physios and nurses on-hand at all times to make sure that I don’t make myself worse. I’ve been told that it’ll be a long way in the future – Probably around a year’s time – but in my view that just gives me time to get myself into mint condition before I go, to really make the best of it.

10 – I have been told to look at Michael Phelps, or Stuart Broad (Two famously hypermobile athletes), and to aim to be in that kind of shape within three years. Dr P doesn’t seem to think that that is a particularly lofty goal, and thinks I’m in the best possible position to get into that kind of shape.

11 – Dr P thinks that whoever told my family to start putting me in the water at an early age basically deserves a medal (So, erm a very belated thank-you to Dr Wilson!) because it’s probably what’s kept me in good condition.

12 – I have been reassured that my symptoms sound all very, very normal for someone that’s hypermobile, and that the pattern of “Always been in pain, but it all really went shit-shaped after I stopped being a national-level athlete” was a story that she heard every day, and that the moral of the story was to keep exercising.

13 – She was genuinely upset for me to hear the number of times that I presented with hypermobility-related symptoms, and had my concerns dismissed.

14 – I now also have exercises to make my fainting-upon-standing less likely (Stuff to build up the blood pressure by moving the legs, and to squeeze the vagus nerve).

15 – And finally, honestly, just having someone acknowledge that being in pain every day is tiring, depressing and morale-sapping was a relief.


I have a lot to get on with.

Pain, and her many handmaidens

I am in pain as I write this. My right wrist has a hot ache, which runs up to the base of my fingers and cuts through my palm. Both of my elbows are stinging – Familiar tendonitis, startlingly unpleasant and made worse by the action of typing. My index fingers feel as if they’ve been caught in thumbscrews, and stretched and snapped. My back, from the base of my skull to the tip of my tail, is sore, with particularly tight, crushing pains at the nape of my neck and across my lumbar vertebrae. No matter how much I move, it feels as if I am being folded and twisted and wrung out. My right hip feels as if it’s being torn out of the socket, bent around backwards as far as it can go – Of course, it’s actually crossed in front of me, Indian-fashion, the most comfortable position for a femur to be in.


1) Pain comes in many different qualities. I have tried to categorise them a size (The physical area they cover), pervasiveness (How easily the pain is ignored, or how much you can continue with your life whilst in the pain), intensity (How much it hurts), immediacy (How suddenly the pain appears, or increases/decreases), duration (how long does it last for) and finally the very subjective quality or pitch (Is it stabbing? Shooting? Electric? Crushing? Twisting? Burning? Tingling? I always think of it as pitch, because I feel pains as either high- or low-pitched; An ache is a bass rumble, the electric zap of a migraine is a high treble, a dislocated hip is a contralto howl, a dislocated shoulder is a mid-tenor at full voice). Trying to categorise pain on a one-to-ten scale is meaningless.


2) Not everyone reacts to pain the same way, and not everyone reacts to different pain in the same way. Someone may hiss out-loud at a cut finger or a touched blister (Size: small, pervasiveness: high, intensity: low, immediacy: high, duration: less than a second, pitch: high), scream at having a tooth pulled, but go completely vacant and soft at having a shoulder dislocated. Or indeed, the same dislocation might on day one cause nothing more than a grunt, and on day two result in the same person curling up into a ball and sobbing.

Because pain is, by its very nature, subjective.


3) Damage causes pain, and pain causes damage. We all know that if something hurts, we should probably stop doing it,  but the corollory to that is that we should stop pain becaus ethe pain itself is damaging. Pain increses cortisol, increases the heart rate, makes muscles cramp and spasm, which can damage tendons and ligaments and tear the muscles themselves.

Pain decreases appetite, meaning that you don’t eat enough and thus don’t have the energy to repair damaged tissues as cleanly. Pain makes it difficult to sleep, which means that the muscles don’t get time to relax, and can cause themselves more damage.


4) Pain still has effects, even when you’ve taken analgaesia. If you’re in enough pain that your blood pressure is spiking and you feel faint, it’ll take more painkillers than just the amount needed to block the immediate pain to deal with that. You might still be light-headed or dizzy  or making descisions as if under a lot of pressure, just because of the residual effects of the pain.


5) The double-bind of pain. There are certain people in the world who do this;

-If I’M not crying out in pain, it’s because I have amazing willpower.

-If YOU’RE not crying out in pain, it’s because you’re not in much pain.

-If I’M crying out in pain, it’s because I’m in the kind of pain that you can’t even imagine.

-If YOU’RE crying out in pain, it’s because you’re weak-willed.

-If X is the worst pain I’VE ever felt, it’s because there is something special about X pain.

-If X is the worst pain YOU’VE ever felt, it’s because you’ve not been exposed to the really bad stuff.

-If I say “X is no worse than Z”, where Z is something like a bee sting, I’m being brave and noble.

If YOU say “X is no worse than Z”, then you probably haven’t really felt X.

Even people with very good intentions will do this. People who are trying to get across that their pain is more severe than yours will do this, even when it is perfectly valid to say that their pain is worse than yours. People who are trying to reassure you will do this. People who are trying to suggest that they are better than you will do this. Basically, everyone does this. I know I’ve done this, and it’s taken a LOT of training to stop myself, since it’s something so ingrained into how we determine status.


6) Believe people when they talk about long-lasting pain. Just trust me on this, it’s hard to explain how constant pain can become a normal part of daily life, but it can. It’s not something that you “Get used to” or “Get over”, but it’s something that you can get on with life whilst having. It’s not less painful, just because it’ been around for a while.


7) There’s a difference between chronic and recurring-remitting pain. Broadly speaking, chronic pain is chronic, recurring pain is episodic. Both have flare-ups, but chronic pain tends to be neuropathic in origin and thus never *quite* goes away, whereas recurring-remitting can be gone for hours to weeks before returning in full force.


8) Be gentle with yourself when you’re in pain. This should be obvious, but you know when you’re in pain, and there’s a strong, instinctive urge to just lie down and rest? Or to sleep? Or to let someone else finish building the wall or carry the bags or make the tea? Take notice of it. Take painkillers as soon as you feel a twinge, allow yourself to write off the day, and do something low-energy. Listen to the radio, watch TV, daydream. Cultivating a fairly in-depth inner world is the way forward, because then you’ve got somewhere to go when your body hurts too much to even think about reality. If you need to meet work or academic deadlines, tell the people in-charge of them well in advance that you sometimes have pain days, so that when you are in pain you need only send them a one-line email or a quick phone call, and they’ll know what to do.


9) Learn the difference between safe pain and unsafe pain. This isn’t a perfect world, so sometimes you’ll have to push through pain to get things done. Work out which pains you can “defer”, and deal with by resting properly later, and which ones need to be adressed immediately. All pain can cause long-term damage, but only some of it will immediately put you in danger (The pain that precedes muscle weakness and falls, for example). Learn, and it’s very personal to you, which pain can be temporarily ignored for the greater good, and which can’t. There is a sliding scale between “Pain that I will ignore in order to do a fun thing” and “Pain that I will only ignore if the alternative is being hit by a train”, and where you put those lines is up to you.


10) I can’t think of anything else right now, but there’ll probably be a part two later.

Onwards and upwards.

Yesterday I had my first significant migraine in ages. Full on aphasia, dry-mouth, visual disturbances, sudden exhaustion, and in the end I just passed out for three hours on the settee. Mid-evening, the heavens opened, and with the sudden massive rainstorm (And enough morphine to floor a bongo) my head cleared.


So, today is a pretty good day.

After a long talk with a faraway friend, I managed to get into work today and make a few quid – Not enough to live on, but enough to mean that I’m going to postpone starving for another day or two. Going to work is always a huge achievement for me, especially after long breaks, so I feel like I’ve done really well, even though I didn’t do brilliantly in actual monetary terms.

I’m also now up-to-date on my German too.

So, two of the huge things hanging over my head are now, notably, smaller. The anxiety that I had been having over the upcoming week has been winnowed down to just one, which is to say “Will I get to this appointment, and what should I expect?”

I’ve also now got all but one of my first- and second- degree relatives’ Brighton numbers, with my direct maternal line turning in 6/6/7 (I’m the seven), my m-uncle and m-grandfather at 0 and my m-cousin at 3. So it’s pretty obvious where the bendy comes from. The lack of data for my paternal side feels much less relevant now that I know that there’s almost definitely bendy on the maternal side (Oh, and three cousins have needed to have their hips pinned or otherwise corrected as children). Effectively, I’m now no longer worried about having to go and have an awkward conversation with my half-sisters, whom I’ve never met.


Three days until I travel for London.


I had a rather lovely dream last night about having finished the doll I’m sculpting, and having cast her in concrete instead of resin. Meaning that she was a lovely cool-pack for when I had migraines and overheated. It might be a good idea, really.

Today, relatedly, was a migraine day, though I did get to finish my German homework (Or at least, finish the written draft of it). Tomorrow, I’ll record it, and that can be the end of it.

Four days to go until London, and I am cacking myself. On the other hand, more of my family have been handing in their Brighton scores, and they’re REALLY interesting. If I can get everyone’s permission, I’ll post them (anonymised) on here – It’s a really interesting tree.

The Fear

Today I’ve been basically drowning in anxiety since I first woke up. As such, since my response to anxiety is to sleep more, I’ve napped for most of the day and thus got nothing done.


In a week’s time, I’m going to the hospital that decides what treatment I need. That decides whether I get benefits. That decides whether I can continue to recieve painkillers. That decides whether I get rehabilitation or palliative care. That finally nails down and names whether I have joint hypermobility syndrome, or Ehlers-Danlos, or Marfan’s, or something else.


Part of me is terrified, because of a childhood of being told that there was no WAY I’d be allowed to be ill, that they’ll take my painkillers and orthotics away and tell me to just grow a pair and deal with it. Because there’s “those poor disabled people” and then there’s me, who is obviously not ill and just wants attention or sympathy, or is lazy.


A few weeks ago, on holiday, I had this exact same feeling, whilst I was curled up in pain from a dislocated hip. I had convinced myself that the pain was psychosomatic, that I wasn’t really in the kind of pain that merited morphine, and that I was an idiot and a terrible person. My best friend knelt by my bed, took my hand, and bent my fingers back, one after the other, showing me that it didn’t hurt me. Pinched the skin of my forearm and stretched it up, so that I could see the night-light through it. Asked me how long the pain in my back had carried on for (Fifteen years). reminded me that, unless I had the power to physically destroy collagen with my thoughts, I was hypermobile and in pain because of it. He got me persuaded to take my morphine, and a diazepam to stop the spasm, and lay with me holding my hand until I was able to sleep.


I think I need to remember that if I was “not ill enough”, I wouldn’t get that degree of sympathy from someone who has as low a tolerance for theatricality as my best friend.


Well, my trains and my hotel are now booked for my trip down to UCLH, and honestly I’m terrified. I’ve got my best friend’s Mam helping me get to and from the appointment, so all I really have to do is wake up and be in the hotel foyer on-time to meet her (Probably about 8am) and then get across the road to the hospital, find my way around the hospital (It’s on Outpatient Podium One, which sounds like it should be some sort of floating glass structure tethered to the main building by carbon nanotubes) have the hour long appointment which I am deeply unprepared for, get back out, then spend a few hours dossing around London before geting the train home at 14.30. Getting to London in the first place is just a matter of getting on the right train (14.45 from Leeds, East Coast) then walking from Kings Cross down to the hotel, which can take as long as it needs to, really.


So I’m currently filling in time by drawing up a genetic history diagram, with everyone’s Brighton scores marked on it. I’m getting a bit emotional over it; This is something that I used to do at undergrad a lot, working out the heritability of traits and looking for patterns, and it’s a strange bit of cognitive dissonance to see my own family noted down in terms of how a geneticist would look at them, because they’re not just “Male, deceased” or “Female, Brighton score 6”, they’re my aunts and uncles and grandparents and cousins. It’s a strange thing, really – I’m the only memebr of my family who’s geographically distant; The rest of them live within about a two mile radius of each other, all in one town, and have done for about eleven generations (There’s currently four generations living there). Looking at my own family as a diagram, I feel like I’ve committed some kind of terrible sin, that I shouldn’t be able to even for a minute think of them as just statistics about miscarriages and faulty collagen, I should be filling in this diagram with them sitting with me, joking about the fact that I’m being ever-the-scientist, talking about how, when you really get down to it, we’re all one family.


But I’m not, I’m filling in a diagram in the bed that I rarely leave, and in a few days I’m going to go to London.