Saturday 07 September 2002

This is going to be a major bitch-whine-snarl session, so you know, feel free to move along. There's some good recipes and things over in What's Cooking. And better people to read if you check out Cool Stuff.

So things have been a real pain in the [insert random body part here] lately. Everything hurts. Real bad. All the time. There is no relief, no rest. I just wish it would all fucking stop. Which is ridiculous of course, because it won't. I'm stuck with this body, and brain, and all the fucked up systems, and that's all there is to it. Except ... oh it's not that easy.

For a start, the State of the System is that it is approximately six times worse than this time last year. It's bad day after bad day after worse night after screaming bad day. When I say that everything hurts, I'm not exaggerating. My head feels like someone's taking to it with a Stryker Saw, with savage pains over my right eye and temple, down the back of my head to the nape (oh the occipital bone, my love), then muscle spasms screaming in my neck - even Sam could feel that the "knots" had the approximate consistency of granite and were twitching, continuing down my shoulders, upper back, down, down, to the small of my back ... And nothing eases it.

I had high hopes that moving to NI would help; that the lower barometric pressure would prove to be advantageous to my condition. Nope.

I literally don't know how much more of this intensity of pain level I can take. I muffle my whimpering and crying because I don't want to upset Sam, but it gets too much. The fact that me, the Brave Little Girl, is reduced to whimpering and crying is fairly indicative of what's going on right now.

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Leaving the musculo-skeletal system for a moment, let's have a look at matters neurological. Fucked, pretty much describes it. My balance and coordination is just terrible, my eyes are going bananas (the nystagmus) and while that generally doesn't affect my vision or focus too much, I'm finding that reading, looking at the puter and watching TV is a real strain. So, blah there.

And gee whiz I haven't even mentioned the latest gastro-intestinal delight. All through June, July and August I was horribly nauseous, quite often vomiting a couple of times a day, which possibly surprisingly considering everything that's usually going on, isn't something I do a lot of these days. I went to the doctor, who prescribed me some Zantac, which didn't help, and yes I also had a pregnancy test (well, stranger things have happened, and ongoing nausea like that is apparently one of the signs of being up the duff - hee) which fortunately turned out negative.

Not surprisingly, with all the nausea and throwing up, I kind of went off food. Now as you all know I adore food - cooking, eating, talking about it (yet somehow never get fat, go figure). Of course, as you also know, I have Coeliac Disease (gluten intolerance) so I'm pretty damn careful with my diet anyway. But I stopped eating. I lost weight fast, as I'm prone to do. You could have played the xylophone on my ribs and hung handbags over my pelvic bones. Now I know the Bergen-Belsen look is really *in* with the kids, but I hate it, just hate it. I prefer to be nicely covered, thank you very much all the same. So, ew.

Anyways, I wasn't eating. Oh sure there was the occasional piece of toast, or dry crackers, or vegetable soup, or chicken rice; nothing exciting, all very bland and easy, but more often than not it came back up on a powerful reverse peristaltic wave. Mmm mmmmm. After oh, eight weeks or so of this (plus the pain thing) I was feeling pretty worried and run down, plus my libido had completely disappeared which disturbed me very much (I'm guessing Sam wasn't too happy about it either).

Okay, so there was one week, about mid-August, when I began to feel less sick. Yay. That day I had a bowl of cereal (with milk - this is significant), a cup of tea (again with milk) and a piece of belated-birthday pavlova (with cream). I spent the rest of that night chucking up my lungs. Hmmmm, said I, I said, and then the realisation dawned.

I had suddenly, without warning, developed lactose intolerance. So yeah, now I have that to cope with too. I can eat yoghurt, and a little hard cheese, and I found a not-too-vile brand of soy milk, and matters gastric have calmed down and I've started to gain that weight back.

Oh joy oh rapture oh happy day!!!! (do you detect a note of sarcasm? Well duh, no shit, Sherlock).

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I'm not even going near the emotional stuff today, so here's the practical problems I'm facing right now. There is no gym within walking/cycling distance and we do not have a car and no buses go near the "nearest" gym. But anyway, a normal gym wouldn't be adequate for me right now, just as my weights bench and yoga mat at home isn't enough (though Rodney Yee on DVD is a definite plus). I'm afraid what I need right now is a complete rehab. exercise joint, with a routine, and personal trainers, and Pilates classes, and and ... And I simply do not, cannot have, no way at all, have access to such an arrangement.

The main sticking point here is the medical system, and the total lack of support I have experienced (and believe me, I have screamed and cried and yelled and such endeavours have been met with a total lack of sympathy and the stock answer of "two year waiting list". Bullshit, I say). My GP is totally useless, the two "specialists" I have seen have been ignorant misogynistic uncaring bastards, and I don't know where to turn. I really have done everything I can possibly do on my own, and haven't got anywhere. Meanwhile, I'm as weak as a kitten, in terrible physical shape, and I don't think I have any inner reserves left.  How much pain and misery can a person take?

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I feel like wailing like a baby;  "I wanna go hooooome! I need Zeus! I need proper care! I need more support!  I can't take anymore of this shit!"

All of which is, I'm afraid to say, 100% true.

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Next up: maybe some of the emotional stuff. And revelations about acceptance of my condition/s (none of which actually help at all in the relief of said condition/s, but hey, a revelation is a revelation, and no magic mushrooms were involved even).

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