Because I haven’t done a personal update for ages.

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.

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8 Responses to Because I haven’t done a personal update for ages.

  1. Fles says:

    Thanks for the insight into your condition. I can appreciate your frustration because it must be impossible for anyone to understand your situation – even once you’ve explained it and they’re sure they’ve got it, I’m sure they must have only the merest idea of what it’s like to live with it all the time. I am quite in awe of your bright determination despite it all. Have an admiring cyber-hug.

  2. Lebeautemps says:


  3. Really feel for you. You are being super-calm. Makes me put my problems into perspective. If there’s anything at all I can do, please don’t hesitate to ask. I would love to feel useful, even in some small way.

  4. njbdartford says:

    Like Steve – if there’s anything I can do. Meanwhile – just warm thoughts, admiration… and the year is turning, warming, lightening, freshening.

  5. My best friend is exactly the same, so I can only sympathise and understand. It must frustrate you no end that people don’t realise the choices you have to make, and how any little piece of exertion can take it out of you for weeks. Lots of love.

  6. cDave says:

    Thanks for letting us know. Hope 2013 is much much better.

  7. Ippagoggy says:

    Love from Montana. I wish I could make things all better for you. ❤

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