12:19am February 21, 2012

Shit happens. Which in this case is good.

Hmm. I am beginning to suspect sometimes I don’t give myself anywhere near enough credit for the amount of energy it takes just to run my body on a relatively basic level. I get fooled by the fact that I’m lying down all the time into thinking my body isn’t doing anything. And then I find out exactly how much it’s doing. I need to remember that next time I start trying to convince myself I’m not doing enough. (I think the blockage, if that’s what it was, has cleared. And now I’m completely wiped out almost to the point of shaking.)

And yes I go through this every few weeks at best. I haven’t been to art in a couple weeks because things like this have been wearing me down. I sometimes feel weird writing about stuff like this. And I try to avoid being too graphic. But this kind of thing is the sort of thing a lot of physically disabled people deal with, a lot more than will ever discuss it in public (though we do amongst ourselves), and total silence leads to fear. And I did make my tumblr to write about all my ‘off’ moments that aren’t about writing perfectly presentable blog entries.

But seriously. Until you have serious problems with it (which I’ve always had some problem but it became severe in my teens) you have no idea how much energy and effort it can take a body to run a digestive system in the right direction at the right speed. And how many ways it can fuck up your body, all the way up to and including poisoning you into delirium and potentially killing you, once it really starts going wrong.

I would not be shocked if it’s something stupid like this that eventually kills me. Not that I’m expecting that soon, but this summer was close enough to feel my body trying to stop. Which my doctor later confirmed, was really that bad, and that my experience of a gravity-like pull towards dying is the real deal, as in he’s heard it plenty of times before. And I’m doing everything I know how, including keeping detailed bathroom records every few hours and a detailed plan on what meds to take and when, and this still happens too often. Which freaks me out sometimes.

But now I’m afraid of freaking other people out. As far as I know, right now, I’m okay. Or as close to okay as I get when I’m completely worn out by stuff like this. But I do feel really strongly that it’s important for at least some people to be open about this, and I’m willing to be one such person. I’ve already been able to get advice to two people that probably saved them hospitalization or worse. That’s worth it. This is not something you fuck around with and it’s something that even a lot of doctors don’t understand the particulars of(*). It can become much more than the mild everyday hassle most people think of it as.

And one of the big things that I’ve learned, is that if it begins to affect my consciousness in any way (beyond that of overload or similarly usual fluctuations) then that’s far enough to treat as aggressively as possible and go to the doctor fast if that doesn’t work. Because that always means I’m right on the edge of disaster, and it’s easier for me to notice quasi-delirious states than it is for me to notice pain. Other people have different, perhaps better, signals but that’s my main one besides the calendar, and it’s proved very useful. Including today, when I almost made what I can now tell would have been a disastrous decision otherwise.

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(*) For instance my two most dangerous close calls involved only 3-5 days without using the bathroom. Other times I’ve managed to tough out 7 or more days at home. There is no rhyme or reason to this. Doctors going by the book could have killed me, fortunately they x-rayed me in both instances and found blockages bad enough I was immediately hospitalized.

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