I went to see freezepop yesterday, it was great: yay, yay, bounce, ugh. Ugh is how I feel today.
The phenomenon of me going to see a band, having a fantastic time and then having my mood go splat afterwards has been well documented, so I'll spare you having to read that again. So take it as read that some of my ugh is depression from being thoroughly over-perked yesterday. The rest is physical ugh. Ugh and argh and how much pain? And then a load of guilt, depression and angst about the pain.
The crux of my problem is: "normal" people my age can go out without feeling like complete shit the next day.
Since I got my diagnosis and a treatment plan earlier this year, I've been doing my best to lead a normal life. Having been so bloody ill only a few months ago, I didn't take the decision to go back to college lightly. What I'm doing now is really tough - one day a week in college, four days a week in school, having to spend hours and hours preparing for lessons I'm teaching and with college essays on top. I wouldn't have applied for the course if I thought I wasn't physically up to it. And for the most part, I am up to it.
But. There's always a but. I've been doing my best to manage without interventions and "special" treatment. It's taken me months to get to a headspace where I'm happy using the lift to go up two floors. (It's a waste of electricity, when I can walk!). I'm still not in a headspace where I'm happy with the sheer quantity of drugs I have to take every day (although I think I've done the experiment where I stop taking some to see if I really need them enough times to be sure). And when I'm already pushed for time to get everything I need to done, finding 20 minutes a day for the physiotherapy that stops my body breaking down is almost impossible.
The problem with trying to behave as if I'm a normal, healthy 20-something is that I'm not. If I don't take my tablets, I get ill. If I don't do my physiotherapy, I hurt. If I go to a smoky pub for several hours, my smoke allergy kicks in, I have to battle with my snot reflex to be able to breathe at all, and the next day my legs, wrists and hands hurt beyond belief. None of this is new. Yet I still resent it. (When am I going to stop resenting it?)
I haven't applied for the Disabled Students' Allowance I'm probably entitled to because I keep feeling that I'm not entitled to it. Compared to other people’s problems, mine are minor, and most people don't even read me as disabled. Etc, etc, you've heard it all before. You know, if I saw someone else making this argument, I'd say "sod how you feel – the rules say you're entitled to the allowances, so you should apply for them. Although we'd like it to be, life isn't a level playing field, and although Everyone Has Problems (TM), some people's problems are bad enough that a bit of extra help can level up the playing field." The irony – that I'd use this argument to convince someone else, but it doesn't work when I use it for myself - does not escape me.
My wrists hurt. My thumbs hurt. You don’t realise how useful opposable thumbs are until the tendon that links thumb to hand buggers up. Can barely write or carry anything. I’m actually typing this with no capital letters at all, and Evil MS Word is putting them in for me (see, it has some uses). Ugh. Have a huge amount of work to do tonight, and I’ve no idea how I'm going to get it done when I hurt this much. And emotionally, I feel worse because it’s self-inflicted. I chose to go out and see a band, knowing the air would be full of smoke and knowing how it would affect me.
But normal people get to go out occasionally. I'm not asking for a Magic Miracle Body that lets me stay out til 4am every night, just the chance to go out once a month without having vast quantities of pain afterwards. I really wanted to stay in bed today – instead, I've come into college like I was supposed to. I feel I deserve a medal for managing to haul my carcass out of the flat on time – but no one else can even see that I hurt. It Really Fucking Sucks.
I want to be normal, but I can't just wave a magic wand and wish myself a better body.
So there is something of an irony that the way to become more normal is to ask for special treatment. If I use the lift instead of the stairs, I can walk around without (much) pain. If I use an adapted keyboard, I can type without fucking my wrists up further. If I get a bus over even a short distance, it means I'm not completely knackered. Right? "Special" treatment isn't special at all, it's just a way of making me function more like everyone else instead of having to struggle with things that other people don't have on top of the demands of e.g. my course.
So, if I know all this - why is it so fucking hard to ask for what I need?