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.

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5 thoughts on “Operation Infinite Dugong

  1. Percy thank you so much for the detailed update. I am delighted to hear that by and large, things went splendidly!

    I had been a bit cynical about personal health budgets, but perhaps you are an ideal case in which their benefits can be demonstrated.

    All warmest wishes x

    • I must admit, I don’t know much about how they work, but if I can use one to fill in the gap where the NHS is currently failing at providing me with physio, then I’m all for it XD

  2. Your own CCG should be able to tell you more about personal health budgets (eek) as the roll out is all happening locally.

    Some praise them, others speak of an administrative nightmare, but definitely worth finding out more!

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