Hi, blog. Long time no post. It turns out when your body goes to heck, sitting at the computer and putting words into an intelligible order is hard. You get a phone post. Don’t you feel special?
It’s been a rough year. We still don’t have answers for why I got so sick so fast. There are some theories, none of them good or simple to prove and all of them complicated. Given my already complex medical map, pinning down yet another diagnosis may well be an impossibility. It’s entirely possible that the best I can hope for is managing the symptoms.
The thing I’ve been struggling with the most is this feeling of utter uselessness. Four years ago I was working. Not a lot, but I was self-employed and I was going out once a week and I was baking and sewing. Now I can’t leave the house unaccompanied and all I do all day is lie in bed and play computer games and even that’s too tiring for me sometimes. I can’t even make a cup of tea for myself. I can’t reply to texts and instant messages because by the time I sort out what I want to say, I’ve forgotten I got the message in the first place, and then too much time has passed and I feel awkward replying. I forget words in the middle of speaking. I have so many games halfway written that I have no motivation to work on because I have no faith that I’ll ever be well enough to run them.
It is 5am and the medication I have to take so that I don’t go into crisis from feeling too much gives me insomnia and I feel like I’m dying by inches and nobody can tell me why.
I have been trying to write a comprehensive medical history in anticipation of seeing a new doctor and my God, it’s so depressing. I’ve been so fucked-up for so much of my life. My food issues started when I was ten, with bad diabetes education. It may have been the standard at the time, but I can point to it being the start of my inability to trust my own appetite because I was told I had to eat the equivalent of three pieces of bread worth of carbs for every meal or my sugars would go too low. No ifs, ands, or buts about it. I was eating one meal a day in Newtown. I was in hospital at least once a year with DKA. And that’s not even getting into the self harm or the untreated borderline during those days. Things are much better on those fronts, at least. That’s a silver lining.
So. Uselessness. The world we live in loves to tell us that we’re only worthwhile of we’re contributing, and we’re only contributing if we’re working. And, you know, I’d love to be working. I loved being an admin. I loved reception work. I really loved transcription. But I can’t do any of that anymore, and I also can’t do housework or the Engineer and the Collector will scold me for exerting myself, and they’re not really wrong. Not when something as simple as having a shower is a drawn-out ordeal and when we still don’t know why I keep having adrenal crashes, just that at least I’m not having constant diarrhoea anymore so that’s an improvement, right?
(The answer is probably more steroids. I do not want it to be more steroids. I’m already on a high dose and I do not want more.)
But when work and housework are off the table, all I have left is Being A Good Friend, and that’s hard too. I have so little bandwidth for anything these days, and I’m constantly second-guessing myself because it’s all I can do to keep up my DBT techniques when I’m this tired and brain foggy, so of course my anxiety and paranoia are ramping back up . I worry that when I do manage to have game, it’s not good, despite all evidence to the contrary. Because that’s what being this sick does. When nobody can tell you why, you start to wonder if you’re really this sick or if you’re just lazy. Just unmotivated. Just crazy. Just selfish. All the things society (and by society right now I mean the government) loves to call disabled people so that they don’t have to pretend to care about us.
Anyway. I’m sure I had something meaningful I intended to say here. I have a post in mind about intersectionality and how my experience of illness and queer identity are inextricably intertwined in a very confusing and complicated fashion that has ended with my identity being mostly a shrug,but who knows when that will get written. Some other 5am when I need to cry into the void, I guess.
The Medical Snowflake Diaries 