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[personal profile] baratron
Cold, cold, cold. It's bloody cold today. Had to put the heating back on, and my hands and feet are like little blocks of ice. Still, Alexa came round with the CAR! so I have been out of the flat and seen large amounts of south London, which is... not often pleasant, but is when you've been stuck inside for too long.

Back home, I'm procrastinating getting stuff together for my doctor's appointment tomorrow. Somewhat afraid that my wonderful "doctors not taking me seriously" history will repeat itself, feeling like a ninny for not just going to see any old doctor there, worried about how many blood tests I might need doing and how many months it'll be to get a diagnosis. I worry too much, and thus I procrastinate - because if I sit here and play The Sims or talk on irc for an hour, that's another hour in which I don't think about my illness (very much).

I am also terribly afraid of saying the wrong thing and thus getting the wrong diagnosis. Especially of saying the wrong thing and then getting the wrong treatment, which could potentially make something else worse. The most difficult part of this is that I entirely lack vocabulary to describe the most important parts of what is going wrong with me.

Most people know what pain is - it's the physical response you get when you injure yourself, and sometimes when an old injury decides to play up, and sometimes for no reason at all. There's a whole vocabulary of sharp or dull pains, and where the pain is, which even if you don't know it before the examination, can be taught to you by the doctor or nurse for you to then use in description.

But for me, the pain isn't the worst of my symptoms. The pain isn't actually that bad - on a subjective scale of 0 to 10, the pain I get in moving around the flat is only about a 3 or 4. It's annoying, rather than distressing - it only becomes distressing if I try to walk on the street. The most distressing symptom I have at the moment is the discomfort. And that's where I start to run out of words.

I have profound discomfort at the moment. My joints, limbs and back all ache. My skin and hair don't feel right - it itches, or breaks out in a rash, or I feel as though there is an insect crawling all over me. The pain isn't that bad, and a couple of painkillers make it stop or bring it to a bearable level. But there isn't anything that helps with feeling itchy and crawly and pins and needle-y. My skin itches so much at times that I want to take it off. I can't get comfortable even on three or four cushions, but have to wriggle and wriggle to try to get comfortable - and then this sets off pain and muscle fatigue.

That's what I need to convey. And I don't think a person could understand what it's like to itch all over, inside and out - how annoying and distracting that is - without having had it happen to them.

Date: 2003-03-12 07:20 pm (UTC)
From: [identity profile] treacle-well.livejournal.com
Print that paragraph out and bring it with you. Read it to them; give it to them.

Actually I'd leave out the "The pain isn't that bad" phrase but keep the "a couple of painkillers bring it to a bearable level" since that's seems like useful information. Definitely keep the "profound discomfort" phrase, and let them know "there isn't anything that helps with feeling itchy and crawly and pins and needle-y."

Good luck!


Date: 2003-03-12 08:18 pm (UTC)
ext_481: origami crane (Default)
From: [identity profile] pir-anha.livejournal.com
what she said. and a person _can_ understand things zie hasn't experienced zirself if zie applies some imagination. even a person who is a doctor. it's sometimes really hard to find a good one, but without trying and trying again, well, one certainly won't find a good one, so there's really no other choice. been there, *sigh*. am there now too. need to preach this to myself. :)

here's hoping you are successful!

Date: 2003-03-12 10:51 pm (UTC)
From: [identity profile] lizw.livejournal.com
My skin and hair don't feel right - it itches, or breaks out in a rash, or I feel as though there is an insect crawling all over me. The pain isn't that bad, and a couple of painkillers make it stop or bring it to a bearable level. But there isn't anything that helps with feeling itchy and crawly and pins and needle-y. My skin itches so much at times that I want to take it off.

*raises eyebrow* That could be a reaction to a drug intolerance. I get a milder version of it if I take too much paracetamol, and one of my housemates got it a while ago on a prescription drug that didn't agree with him.

Date: 2003-03-13 09:32 am (UTC)
From: [identity profile] lindsical.livejournal.com
My skin and hair don't feel right - it itches, or breaks out in a rash, or I feel as though there is an insect crawling all over me. The pain isn't that bad, and a couple of painkillers make it stop or bring it to a bearable level. But there isn't anything that helps with feeling itchy and crawly and pins and needle-y. My skin itches so much at times that I want to take it off.


_.::::.__.::::._
I feel like that all the time... i really wish i could get normal skin...

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