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pollyw

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Posts posted by pollyw

  1. Posted · Report reply

    nice idea for a thread.

     

    I unravelled a glove I was knitting a couple of days ago, I wasn't sure at the time whether I should of done this as knitting can be taxing on me.

     

    However today when I reached the point where I had unpicked it, the thumb, I knew I had done the right thing as the holes where much smaller, instead of great big gapping joining holes. I knew I had done the right thing, even though a little extra effort was involved

  3. Posted · Report reply

    thats ok.

     

    regardards to the heat, when the temperature first started to go up I find my symptoms subtly changing, breathing, pain, etc I can tolerate 20c. however yesterday being much warmer my body is starting to complain more, like you say tiredness, overwhelming tiredness, dizziness is much worse to, my joints are protesting also!

     

    hope you feel a bit better soon. (obviously a lot better, yet I know how eds works!)

  4. Posted · Report reply

    wow trekster I didn't know that it was that high. I don't suppose you have any information I could print off regarding that so I could take it to the g.p when I'm ready? would be really helpful.

     

    im currently trying out pain meds, due to the sensitivity I experience with meds I'm not having much luck. although if I overdo things sitting up I get that 'whacked round the head with a cricket bat' feeling (the only way I can explain it!), I had 2 steroid injections into my head which seemed to help.

     

    I have marfan habitus (sp), traits of marfan syndrome.

  5. Posted · Report reply

    i was dx with eds 4 years ago, and it still hasn't sunk in properly. pacing I ok with if I get into it. then when Im slightly busier I forget to pace until I feel exhausted. I went to Stanmore too trekstar, the course was really tiring for me, a lot of the people that went were shutting their eyes come the afternoon in the talks! so I wasn't the only one.

     

    pain is an everyday thing, im sort of used it now. in the beginning around 7 years ago when I was experiencing all over body pain, constantly I would wish for a day or half a day where I could be symptom free, now I don't do that because I know its not going to happen.

     

    also have p.o.t.s which dizziness is frequent, and the autonomic symptoms that go with it.

  7. Posted · Report reply

    the gas leak rung a bell with me. a while ago I was sure there was a gas leak in the hall. I tried to persuade my parents, yet because they couldn't smell it, they dismissed it. anyway I went on, until they called out the gas peeps. the man said there he couldn't smell anything, yet would get his gas detector out. there was a small pin prick of a hole, he was amazed that anyone could of smelt it. to me the whole hall carried the scent of gas.

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