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.
~ ~ ~
* 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 :)
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It's incredibly exhausting, I would imagine, to feel like crap for long periods of time. If only there was somehow a way to step outside of it and turn it around in your hand like a small thing. I think blogs are great for ranting because as you say, if people don't want to read it they don't have to!
ReplyDeleteThanks, Emma. I like the way you put that - to step outside of it and
ReplyDeleteturn it around in my hand like a small thing. I do need to do that,
sorely. I have been better in the past at doing that than now. I think
getting out of meditation is probably the main factor for that. I am
also planning on seeing a psychotherapist next week to help me get past
so much of the fear that I seem to carry around with me - some from my
childhood, most from the whole pyroluria thing. I would be so nice to
get past all of that and return to some better form of equilibrium - and
I will. It's just getting past this bit, I guess. Thanks for reading
:)
I just enjoy hearing from someone as real as you are, Sue. I don't care what you write about really:)
ReplyDeleteHi Sue, I would be interested to hear what you are taking in relation to your supplements, dose and specific forms, particularly zinc. Drop me an email and I might be able to point you in the right direction.
ReplyDeleteI can relate to the feeling that it is easier to write than talk, before I knew I had Pyroluria I barely had enough brain power to string a sentence together.
Take it easy.
Thanks for Discombobula, Sue. There is a difficult to admit side to your posts, for the reader — which is that sharing your struggles makes us feel better, because more normal. I sometimes don't want to admit my struggles, because there is a subconscious sense of being singled out, as if I did something wrong, Maybe that small object in our hand, is that simple fact, that life/nature seems specifically designed to test us all endlessly, not as punishment but so we can grow and evolve.
ReplyDeleteFear is the cheapest room in the house.
ReplyDeleteI would like to see you in better living quarters. ~ Hafiz
Someone sent me an email today and this was their signature. I thought you might like it. I don't know why it's red. It's FIERCE well wishes!! :)
Hey Harry, I can't seem to find your email address on your blog anywhere. So glad you're feeling superb :)
ReplyDeleteIt is very cool, Emma, and thank you :) Fear is the cheapest room in the house. It's the bottom of the barrel, so to speak. I do very much like your fierce well wishes.
ReplyDeleteAww, thanks, Harry!!! :)
ReplyDeleteHi Sarah. I *so* relate to that feeling that you will be singled out as if you did something wrong for admitting your struggles. I don't really know why I am not more reticent in sharing them. I guess for me I have never really had that problem come up where people have rejected me for being open; I find people tend to respond pretty well. But then, I go around feeling so vulnerable anyway, it's like, sheesh, I wish I *would* keep my stuft to myself :)
ReplyDeleteBut then writing about it is another thing entirely. I can't quite explain it but there is a feeling of protection I have when I write about stuff that is different to being that open in person.
Yes, I think the test is to grow and evolve, isn't it. Whereas I've just had enough of that and I want to sit here and fester now, if it will mean I can stop suffering in some form or other! :)
Hmmm, I enter my email when I comment here. That's alright, I'll drop you an email as I can see your email address when you comment on my blog.
ReplyDeleteAm I one of the two? Be sure to count me, because I read here regularly! And I don't mind at all hearing about your poo or your B6 levels...it's all part of being human.
ReplyDeletenice blog
ReplyDelete