Yes, I know. My blogging output, which was never all that regular, is particularly thin on the ground at the mo. Reasons include being off work *again* – which tends to signify the need to lie in bed and watch downloaded American television and listen to Radio 4 comedies for hours on end, as that’s about all that I have either the physical or the intellectual capacity for – and physio, which would be driving me mental if I weren’t already, and which is exhausting. Hence, again, all the telly. (How I Met Your Mother – the best sitcom you’ve never seen. If you’re too ill to move for a while, download all three seasons and forget all your woes. Tonight’s Doctor Who – one of the best things I’ve ever seen on the tellybox. The Ouch Podcast – what to listen to when you’ve run out of everything else.)
But as I am now so bored that my brain is dripping out of my skull via my ears*, it’s time for Three Things, aka What I Write When It Has Been A While And/Or I Have No Imagination.
1. Physio: a good NHS experience (no, really)
While I’ve never much liked the whole concept of physiotherapy, and am still not sure whether it’s going to do me any long-term good, I am nonetheless currently living at UCLH. And, weirdly, it isn’t all that bad. It appears, so far, to be that elusive thing that I always suspected was a myth: a reasonably good hospital. Just comparing it to the faded yellow hellish halls of the Royal Free, where last year I suffered at the hands of some truly incompetent idiots who claimed to have physiotherapy qualifications, is interesting. There, the hydrotherapy pool was up (up!) twenty steps and no one was ever free to help me climb them; they stuffed up to eleven of us in a tiny pool together while a physio sat on the side reading a book and occasionally looking up to check we hadn’t all drowned; a laminated chart of exercises was shoved in each patient’s direction and we were told to get on with it; there were two inadequate changing rooms with no secure facilities for valuables; at the end of my six allocated hydro sessions I was basically refused any more physiotherapy on the grounds that “it doesn’t work for fibromyalgia”, via a very rude woman who phoned to tell me this (clearly no one could be bothered to give me an actual assessment in person).
And then I go to UCLH. I am having two types of physiotherapy there this summer – land physio and hydrotherapy. Beautiful new building with some lovely facilities. I arrive for my first hydro appointment and am shown around the hydrotherapy area by the department’s dedicated receptionist, who shows me into one of the many large, comfy, accessible changing rooms and puts my locker key in a safe place. There is a physiotherapy support worker whose sole job seems to be to make sure that patients are OK. There are a few shallow steps down into the pool (it’s like a miracle of engineering). I am introduced to the physiotherapist – it’s just me and her in the pool (she apologises because next week there will be one or two others). Instead of just handing down a set of physio exercises from On High, we have an actual discussion about what hurts and what needs strengthening and so on. When some of the exercises sublux my joints, she revises the programme for me, and warns me against overdoing it. She suggests that I decide for myself whether I come weekly or fortnightly, in discussion with my primary physiotherapist. She refers to my overall programme as one of “long-term management” and says that she would like to give me exercises that I can take to my weekly swimming sessions (it’s not entirely fact that I go swimming every week, but it is an aim) so that I can continue them when I’m not having regular hydrotherapy anymore.
Seriously. I didn’t realise the NHS could work like this. What a shame I’ve never encountered it before, and probably never will again. My other physiotherapist isn’t quite so great, but she’s OK, and sensible, and happy to take things slowly with me. The jury remains out on whether it will help. It’s some help to about 70% of EDS patients, but with very varied results, and it partly depends whether the physio knows what they’re doing. I’m still working out whether mine does. We shall see.
2. The Girl
She is away. This is sad. She is back on Wednesday. This is good. I am living on ready meals. This is necessary. I am giving up the diet. This is important so that I do not entirely lose my mind. I will be curvy and happy and occasionally eat chocolate and not go mad with hunger. Hurrah.
I don’t have the first clue what to do about this. I’ve been off for four weeks. I have no energy and can barely get out of bed some days, and am in massive pain the other days. In reality, if I can’t get in on Monday, it’s time to call it quits. Everyone in the entire world has been telling me this, including my King-of-the-Protestant-Work-Ethic father (who offered to give me money if I was poor, and then said he would put it in a brown envelope if it affected my benefits – aww!) But I still need to persuade myself. Myself is not easily persuaded on these things. The only person who seems to think I should have a “good ending” (now there’s psychobabble for you) at work is my CBT therapist. But CBT is another story for another time. And I have written quite enough for today.
Suffice it to say that I am bored, that I need a new project, and I will attempt to write about my attempts to find one. Shall we see if I can post nearly-daily for a while, again? I can’t. But I will try. Aren’t you all so lucky? I think so.