Actually, this is a several-part blog post.
I’ve now had grab rails installed on the stairs and in the bathroom, which is good, but does make the house look a bit like a care home, and have been back to OT to get an epicondylar clasp made – Basically a pair of pads which grip my forearm in such a way that they prevent the muscles pulling too hard on the attachments at the elbow, thus giving the tendons time to become less inflamed. I have to wear it constantly for three weeks, and it’s already giving me a rash after a day and a bit.
Yep, I was supposed to be at iaido this morning, but my partner started off unwilling to drive me (It’s a club we both go to, about fifty miles away – He was going to go without me) since “I might just fall to bits”. This is kind of one of those arguments that can go around in circles forever; I know that about half the time, I’ll end up hurting myself at iaido, and about a quarter of the times that I hurt myself I won’t be able to finish the session. Since Sensei knows what’s wrong with me he doesn’t mind, and I honestly think that risking a minor injury that’ll slow me down for a day, in order to continue with my sport (The last point-of-continuity with my life Before) is a risk worth taking. The trouble is, I feel that after the insurance concerns have been worked out, it’s really my business to decide whether or not I’m capable of doing something and whether or not the risks are worth it. I’m not having a manic episode, I’m generally known for having a realistic grasp of my own limitations, and flat-out arbitrating someone else’s activity levels is a bit too infantilising for my tastes. I can’t just “Wait until I’m better” because I’m about as good as I’m going to get right now, and I really don’t want to just spend the rest of my life slowly withering down to nothing, trapped in the house, when I know that I could be out doing the things that make me happy. I know that he’s concerned for my health, and that he’s not got some sinister intent, but I just wish that he’d either trust me when I say that I’m well enough to train (And I am actually feeling really fit today, more’s the pity) or have a proper conversation about why he desn’t think I’m fit enough to train. There’s also, of course, that nagging feeling from years of bad conditioning of “He just doesn’t want to be seen with a cripple, an embarrassing cripple who can’t do anything right, who stands out as being a failure, who everyone pities, who reflects badly on him because they’re whiny and weak…” And I know he’d never mean that, because he’s not like that – He does just genuinely worry about me – but in this instance he’s expressing it in a cackhanded way that keeps hurting me.
I don’t know what to do about it, but at the moment, as much as giving up iaido is going to hurt, it’ll probably hurt less than the feeling that I get every time he says that I shouldn’t go.
Anyway, lovely SummoningEsther has linked me this list of local EDS support groups, which is a relief, since there’s one much closer to home than the nearest meeting of the general Hypermobility Syndromes Association. I’m not sure if I want to go – I have weird issues about feeling not ill enough to need a support group, plus I’m really shit with new people and tend to be incapable of reigning in my unpopular opinions (to the degree that the shape of my nose is a testament to my character). They might be an appropriate place to find people who’ve had similar troubles, and honestly might just be somewhere where I can find new people to socialise with that take life at a similar pace to what I do. Despite my best efforts, I feel both intensely lonely right now and terribly scared of meeting new people; My best friend is getting a new housemate this month, and I’m mentally preparing myself for just not seeing him in-person much anymore, because the thought of being visible to a new person, in a context where I’m not able to directly manage the lens through which they see me, scares the hell out of me. I don’t want to stop seeing him, I don’t want to become even more of a recluse, but I know how my mind works and I know that it’ll just be too frightening to visit him, so I’ll make up excuses and stop visiting until I’m just no longer thought about. I can deal with people online – They see my writing first, so even if I’m writing about illness I’m able to present it in a way that I choose, and if they see me on webcam I’m able to manage my setup so that what they see is someone reclining in comfort, who can immediately switch it off and have privacy if anything medical happens, and can socialise for tiny amounts of time in-between bouts of morphine-induced confusion, so people don’t see them helpless, or anything less than droll and intelligent. It’s like a hyper-magnified version of most people’s online attempts to make themselves more appealing, but stretching out to the point that I just don’t socialise in the real world.
Going down this road – I know that people don’t genuinely only spend time with me because I’m the only person available or convenient, but it was hammered into me when I was quite young that I was basically an ersatz-person, only good enough to be around until the real interesting people turned up, only a good enough craftsperson to build stopgaps or things which were “good, for free”, only intelligent enough to ask for advice when all other resources had been exhausted. I, for obvious reasons, took refuge in my body. I might not be the brightest, or the nicest, or the most interesting, or the most talented, but I could be the fittest, the strongest, the tireless; The one able to carry the person with the broken leg back to the youth hostel, to walk the ten miles in the snow to get food and chaperone people home safely, that didn’t need to be good at conversations because people either started them with me by saying “Christ, you look fit”, and then tolerated me leeching the minor socialisation that I needed because I was a useful body to keep around, or didn’t come near me at all because of the nagging impression that I might just punch them. The one that could find joy in swimming against the tide in the north sea, because there was guaranteed to be nobody around to make them feel ashamed of themselves for not being a real person. And losing that physical presence, I feel like I’ve lost everything. Why would anyone want to talk to me, when I’ve done nothing of note for months and can barely hold up my end of a conversation? Why would anyone want to commission me to build something, when I can’t even guarantee that I’ll be able to buy in materials or move my hands? Why would anyone want to fuck me, when it’d be so much easier to fuck someone who was whole? I live in terror of everyone that I know realising that their lives would be simpler if they didn’t keep me around (Yes, even the people who are ill as well, and possibly even more so – Their lives are already complicated, why would they want to complicate them further?) and just quietly phasing me out of their affections.
Today, incidentally, is not being a good day.
A tiny spot of good news though; My MP has forwarded my complaint about RL to the Parliamentary and Health Service Ombudsman. And another link from SummoningEsther; A survey on healthcare, for people with rare chronic illnesses that have difficulty accessing treatment.
I think I’m going to go back to sleep. I’m in no state to work, and can’t deal with people right now.