The reason I haven’t done a personal update for ages is that 2013 has been difficult, thus far. I was doing really well at the back end of 2012. And then my health folded (ME/CFS), and this time it’s folded in a way it hasn’t since late 2008. While I’m accustomed to dealing with fail at fairly high tide, I thought this level of fail was behind me. My eyes have packed in and everything is a superbright blur that clears, like clouds parting, then blurs again. My muscles have failed, and I can only do a staircase twice in one day if I’m prepared to crawl up it the second time. I can’t grip anything. My skin is so thin I can tear it washing myself, if I’m not careful. Everything hurts. Several times a day I find I cannot stand. All this has improved a bit since I started a mostly-vegan, mostly-live food diet a couple of weeks ago. But it’s a question of degree. The slightest bit of excitement or upset uses up the little stores of energy I have (good things are as exhausting as bad). I’m running at 100% capacity if I just get up, wash, put some clothes on, eat some oats, and lie on the sofa drinking tea. All day. You can say “I am incredibly fragile, please -” to well people until you’re blue in the face. They won’t understand what that means.
People make the mistake of thinking that because I live with this and because I prop myself up and smile when I see people or talk to people, and because I always want to know – really know – how everyone is and I listen to people when they are sad, and nobody ever sees my washing-up not-done, and when I AM well enough to go out I breeze into gatherings with a big smile on my face, I am strong. Well, I am in that way. But the truth is, I’m not strong if people hurt me. When that happens, I just run off, not because I’m angry but because I physically cannot bear it. You need physical resources to get though that. I don’t have any. It looks harsh from the outside, like hate, but that’s not where it’s coming from when I pull the plug. I’m just trying to survive this without becoming even more of a burden to my parents, without ending up with a fucking carer.
So: no big plans for this year, other than “please, let me get a little better than this,” and “please, let me not be required to do anything until I am.” It’s not so much a plan as an plea to circumstance. Which, as we know, is a capricious feck at the best of times.