Posts by Sue

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  • Up Front: Something Chronic,

    EEEK the tilt table test and blood pressure
    again that was something very popular around about 94/96 as was taking beta blockers.

    and stress does not cause CFS, it might be one of the triggers, but it's not the cause if only it was that simple.

    Wellington • Since Nov 2006 • 527 posts Report

  • Up Front: Something Chronic,

    I read studies around brain scans where people with CFS have a different looking brain scan

    But honestly that was back in 94 and nothing has come of it

    Wellington • Since Nov 2006 • 527 posts Report

  • Up Front: Something Chronic,

    @bart i should say the fixing with no thinking, like oh maybe you are sleeping too much or Ii'm sure a bit of exercise will fix it or have you tried diet X.

    here is the first place i've found people posting thoughtful and compassionate and wonderful posts

    Wellington • Since Nov 2006 • 527 posts Report

  • Up Front: Something Chronic,

    Yes thank you so much emma and everyone else who is sharing. I gave up telling people i had CFS as all they'd want to do is tell me how to fix it or that they got tired too. Also i became scared of groups or reading more books as like Julie i felt i was developing phantom symptoms.

    the one think is true across the board for CFS the treatments that work are as varied as the symptoms people experience the most.

    Also so many doctors get confused between what is the situational depression that CFS causes and depression that is chemical. I have both but that's actually really unusual.

    Wellington • Since Nov 2006 • 527 posts Report

  • Up Front: Something Chronic,

    Autohaemotransfusion?

    I never gave it a go, it seemed weird and freaky

    Wellington • Since Nov 2006 • 527 posts Report

  • Up Front: Something Chronic,

    ok is it wrong to ask which was the weirdest treament suggested by a CFS specialist doctor?

    which yes does mean witchdocotor

    I met one who recommended taking blood out of your system and then re inejecting it X hours later. And they seemed more sane than the one who recommended the copious amount of vitamin C

    Wellington • Since Nov 2006 • 527 posts Report

  • Up Front: Something Chronic,

    it also affect loads of nurses and schoolteachers and often people in high stress situations.

    One theory used to be that sufferers are in high stress situations then you get an infection and your body never stops fighting the infection, it's why so many people with CFS have super high Tcell counts or white blood cell counts i forget which

    Wellington • Since Nov 2006 • 527 posts Report

  • Up Front: Something Chronic,

    How about being a human pincushion in those first few years when you are trying to find out what is wrong. Oh that one is a winner

    Julie I am with you on the internet, it saved my life at the time, it still does. It just make the isolation not so bad, and if you are tired and need to nap nobody needs to know.

    I'm incredibly lucky the doctors winz referred me to knew about CFS. Plus I had a blood test done in dunedin through the medical school and the amazing Dr Les Simpson that showed how my blood cells were different from 'normal people' which was a indication of CFS.

    I also think I'm lucky i never had the fibro problems, So I've been able to keep crafting, But oh the tiredness and oh the mess trying to deal with my cinical depression and anxiety and sort out the difference between that and the situational depression of CFS.


    But I still miss going out at much as i want to and bailing at the last minute becuase I'm tired. But I have got better at living by the 50% rule but sneakily planning ahead for the crash if i intend to over do things like sell for a day at a fair.

    Wellington • Since Nov 2006 • 527 posts Report

  • Random Play: Fiji or not Fiji, that is…,

    I would never travel to Fiji under the current regime

    to start off with i wouldn't feel safe, it doesn't feel like a safe country any more. I'm concerned that one day i could be ok as a visitor and the next the powers that be decide to do something that makes me less safe.

    Fiji was my vacation destination of choice for many years when i was working. I celebrated birthdays on one of the few island resorts owned and run by a tribe. I miss that place, I would feel safe there but not going to and from.

    Do embargoes make a difference? I don't think so

    we have a free trade agreement with china who are no angels when it comes to human rights and freedom of expression and association. But for some reason we ignore fiji where there are limits on freedom of expression and association.

    But if you look at the histories of fiji and china both are super complex, and i doubt either country would work or fit the western idea of democracy. I don't have the answer but I won't be going back to fiji for a long time i suspect and that makes me sad.

    I am going to Hong Kong for about 5 days later in the year, so yes i'm a bit of a hypocrite myself. I do feel safer there tho.

    Wellington • Since Nov 2006 • 527 posts Report

  • Field Theory: Cancellation Notice,

    So how many people are speaking as the voice of the carnival?

    chris is one, and he's the man with the vision and who i thought was the voice and force of the carnival

    however now there is this new uber trust to look after carnival and fringe and becuase it's being set up = no carnival in 2011

    then there is someone from the carnival board i think

    Wellington • Since Nov 2006 • 527 posts Report

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