Sometimes, outside validation is a lovely thing. It helps you articulate things that have bothered you for decades but you haven't wanted to put words to it in case you get locked up. In the case of pyroluria, having the symptom of "severe inner tension" listed right there on the page is a real validation.
Sometimes I feel like two people. I've grown so used to having this "severe inner tension" that I can go about my day doing stuff and all the while it's simmering away there. But it's not easily expressed. For someone who is happy to talk to you about the state of her poo*, when it comes to talking about this I get strangely reticent.
Except, of course, when I'm talking about it on my blog. Which is sorta weird, right? I mean, so many people think blogging is a pointless waste of time. Indeed, out of all of the people I know, at most only two of them reads my blog regularly. I don't bring that up because I'm feeling snarky that people aren't reading my blog; I bring it up because (a) if I have something published, a whole lot of people who don't read my blog will go and read that, because it's proper writing; and (b) I am way more able to articulate myself these days in written form. It may seem strange to some who presume that speaking is more real than writing. I am less able nowadays to form what I want to say into coherent sentences. I am so much more myself on the page than I am in real life. Paradox.
I'm tired today, and fed up. I'm fed up with the fact that I can't seem to sort out my B6 levels. I've tried small doses, large doses, varying degrees of standard B6 and P5P, and I just can't work out what to do. I can't work out whether I am not absorbing it properly, or if I am absorbing it and I'm maybe taking too much, and that is contributing to feeling severely innerly tense, or whether I would be feeling like that anyway. The problem with jumping off too quickly when taking new things is that sometimes, just because you are feeling worse doesn't mean you're not on the right track. Sometimes there is what's called the Herxheimer effect, where you feel worse before you feel better because that's what needs to happen in your body as it stabilises itself. But sheesh, I don't fucking know.
I'm fed up with the whole box and dice. I'm fed up with how, when I am feeling bad in my body (which always passes after a time), I manage to make the whole thing totally worse by the "suffering" thoughts that flood in. The victimised thoughts. Thoughts like, "It shouldn't be like this," or like "I just want to be normal".
(Which isn't, by the way, true. Normal people seem awfully boring and rather resemble sheep in their inclination to follow along after everybody else and watch the news on Channel 9 without feeling unbearable).
But normal people get things done. And I really would like to get things done.
Like the bathroom, for instance. That baby hasn't been cleaned for weeks. That's not asking too much, is it?
Okay. Whine over now. Because comparison is the thief of joy, right? And comparing myself to other people does make me feel worse. Even when that comparison is with a different self than the one I currently inhabit.
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* Some people are much more tidy on their blogs, and they only publish posts that are about something, rather than complaining about their health issues. Some people resist the urge to write these sorts of posts because they are seen as self-indulgent. They would, for example, skip writing this post and instead choose to write about the singalong me, Andrea and
my mum went to last night where we sat with a whole lot of middle-aged women singing songs with Rebecca Barnard and Billy Miller and which was really FUN!
But then I'm also mindful of the amount of people that have begun surfing into my blog with pyroluria tags. I want to write about my experience if it helps someone else who is struggling with this maybe feel not so alone. And anyway, I don't know why I feel like I have to apologise for writing things that might be seen as self-indulgent. After all, if these posts bore you, I'm sure you wouldn't have got this far down before skipping to the next post in your feed reader. Why do I feel like I have to apologise for writing about feeling crap? Because I tell you what, I feel like crap. It's interspersed far more these days with feeling much more normal again, but I just feel crap. And I'm fucking well sick of it.
I guess I feel apologetic about writing about my health stuff because it's been going on for soooooooooo loooooooong. And people's eyes glaze over when you talk about your health issues. Because it's really boring.
But anyway, speaking of poo, I do intend to write about the colonic session I had last Friday. Because I know you want to hear about it. And I feel it's my duty to keep you informed :)