Operation Infinite Dugong

So, Wednesday was London. Stanmore. The thing I was terrified of and didn’t want to go to.


And it was all really good.


Other than the first passenger assistance at the local station, who basically treated me like a sack of turnips and resolutely ignored things like “Stop here” or “I want to go there”, to the point of pushing me high-speed the full length of the station in the wrong direction as I protested loudly, nearly missing my train, everyone was really nice and helpful. Upon arriving in London I was greeted by another passenger assistance bod, who wheeled me down to the Metropolitan line gates, where I was helped down the steps to the platform by a Tube employee (Including the secret knowledge that you can just pay for tickets at the ticket gates, with a contactless card, as if it was a Suica), and then at the other end, in Stanmore itself, I was met by patient transport and ran up to the hospital in a taxi. And everyone was really nice.


The Tube journey itself I really enjoyed – The first train was one of the new S-stock (Very like a Tokyo Metro train, a single tube running from end-to-end) and the others were 1996 stock (Tiny, round trains) and it was a pleasant tour of London’s leafy suburbs. Finchley Road station, where I changed, isn’t quite as lovely as Baker Street, but it’s close.


Anyway, upon arriving at Stanmore I was nervous again, but it turned out to be really useful. Dr DH was much like Dr A (Of UCLH) in that he was non-judgmental, understood that I would be basically an expert in my own condition by now, and reconfirmed that what I was doing now was probably all the right stuff.

New things which he pointed out;

  • The muscle insertions in my shoulders were probably quite unusual (he didn’t say “deformed”, but…) from years of swimming, and that probably had some kind of effect on my shoulders’ luxations, though whether good or bad, he didn’t know.
  • The stabbing chest pains were probably from when the muscles supporting my shoulders got exhausted, and thus tried to co-opt my chest muscles into holding their, not-inconsiderable, dead weight. So, not dangerous, but unpleasant, and my approach to them (“Lie down, arms and neck symmetrical, rest, sleep.”) was exactly right, and powering through them would just hurt more.
  • Swimming was still doing me a lot of good. Incomparable good. Even if I needed to build up my tensor fasciae latae and my adductors separately, because the motion of swimming wasn’t building quite the right muscles for good work on-land, it was a good starting point and meant that there’d need to be less remedial work.
  • He also suggested that the reason I wasn’t great at weightbearing might have something to do with shallow acetabula, as well as unbalanced muscle development in the legs.
  • Decided that what I needed wasn’t the standard Stanmore inpatient course, since a lot of that was to do with psychological management of EDS and basic how-to-get-by-day-to-day workarounds, which I had already worked out, and he admitted that group therapies would probably bore me to tears and that I would probably just “tune out” many of the sessions, because they were either therapy for a problem I didn’t have, or would be teaching something that I already knew.
  • So, he’s proposed some hard-core, full-time, intensive-course physio, hydrotherapy, exercise, and biomechanics. He agrees that what I need is probably closer to a personal trainer, someone who will just walk beside me on the poolside and correct my form, then set me appropriate exercise in the gym, and generally both encourage me to stay fit but prevent me from overtraining and knackering myself. This will either be in London, or will be provided by the local services (Knowing our local services, I’d much rather that it was in London). As much as I know that asking for this was asking for the moon in a bucket, he looked really really enthusiastic about it as well, and is going to get Prof HC to discuss it and sign off on it once she gets back from the EDNF conference.

I came out of the appointment not just a bit cheered up, but downright excited. This is the fruition of what Dr A said at UCLH; Stay fit, and we can make you even fitter. Even if I never get to the point where I can casually walk to the shops or type as much as I really need to, I can get to the point where sudden bursts of hard exercise aren’t beyond me. It was only last year that the first half of my hundred-metre split got close to 25 seconds again. I can do this. Maybe think about getting involved in the naturist swimming galas, for something external to aim for.

After the appointment, I went for a quick tea with an internet friend, and was probably completely incomprehensible since my head was absolutely spinning from the appointment and the long journey; I really enjoyed it though, it’s nice to finally put a third dimension on someone I’ve known for years.

And then, well, back home. The east-coast mainline at night is a frankly meditative thing, whooshing through darkened fields, lit only with the odd glow of a level crossing (Often a level crossing with a pub, or a house, in the old signalman’s cottage), with only the sound of the locomotive up ahead and the odd announcement that was basically lost on the empty train. Eventually, the fields gave way to hills, the hills to sodium-lit goods yards, then finally to the glow of the city. Our railway station always smells so strongly of lilac and greenery in spring, especially at night, and once again the empty architecture was just fabulously calming.


And then there was my medication review on Friday, which I went into much less calm. This was with Dr P, whom I’d last spoken to on the phone a month or so ago, and who in retrospect I’d also been given more capsaicin by during my last migraine (Unrelated events).

And, somehow, that went well as well. Staying on everything that I’m on, adding an extra 100ml per month of morphine, and coming back in a couple of months to talk about Stanmore, once the letter is in. He also said that I was probably “More of an expert on EDS now than most doctors” so just deferred to me on… Basically everything. So, I have a plan – When I go in next, I want to ask about getting my NHS personal health budget, and using it to fund private physiotherapy or hydrotherapy, or both.


Things are looking like they’re going to go well, for once.


Also – On the personal-stuff-level front; I’m now starting my dissertation in-earnest (Due on the 2nd of June), my Mod 1 training (Starts on the 25th of May, exam on the 31st) and obviously I’m still writing the EDS Alphabet for EDS Awareness Month. So, yeah, I’ve got a few plates spinning at the moment, but hopefully it’ll all be fine.

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.

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.


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.



Five More Years

Long day yesterday; Arrived at 10.30 for my 11.30 appointment, only to be told that it was going to be an afternoon session, and that I’d not even be seen until 14.00. Finally got in at around 16.30, and out by 18.00.

Phlebotomist was lovely (And gave me a warm bag to heat up my hands with, since there was no way of getting blood out of my arms outherwise) – Managed on the second needle site (Back of the right hand) using the smallest needle possible. It still took an age to get any blood out, effectively under gravity, but it worked.

Ward staff were lovely – Brought me pillows, medication when I needed it, and generally left me alone. One was a fellow Open University student, so we had a bit of a chat, but I wasn’t particularly pressured into being sociable.

Anaesthetist was lovely, not patronising but also not deliberately confusing, and she was happy believe me that I knew my own body’s trouble better than she did.

Porter was terrible – Undid the strings of my gown whilst I was kneeling up in  front of the whole ward, so they all got a flash of my arse, pulled my ear piercings, touched my tattoo without asking, nearly took my leg out of the socket by trying to unwrap it out of a blanket that I’d put it in for safety’s sake, quizzed me about how I got dressed and moved and generally lived with the general tone of “Oh, I can’t have hurt you, you’re not ill”, interrogated me about my self-harm scars, and then actually dislocated my shoulder in his zeal to help the anaesthetist find a vein. I ended up pushing him away and finding my own. He was not a nice person.

But everything went smoothly, I woke up back in the ward, a little bit sore, a little bit groggy, but after some tea and toast with surprise raspberry jam on it, and the statutory “We have to see you piss before you can leave” which is tricky when you’ve only had a small cup of tea all day and have given a urine sample already, I got to go home, and basically pass out on the settee for nine hours.


Today is the last day of cheap train tickets before UCLH, so I’m going to spend today arranging that, sorting out my German homework, having a bath, and maybe heading into town to pay in a payslip. It’ll be a busy-ish day, anyway, but not a stressful one.