Hi Sujay, Klutzo and Nickname:

Discussion in 'Fibromyalgia Main Forum' started by kooky, Jul 24, 2003.

  1. kooky

    kooky New Member

    Thanks for the wealth of info. I suppose the 'not knowing' is actually scarier. I check out the info concerning the ISA Panel etc.. on the net. Very grateful for this piece of advice.
    Also, I was glad for the tips concerning MR and LVF, and concerning coagulation. It does make sense as often the veins in my hands, arms, are swollen and painful as well as in the abdomen, groin, and head.
    I fell ill end of 1996 and have seen several doctors both private and on the NHS whilst on private medical care. Eventually my employment was terminated along with all the benefits such as private medical health care. Am now back on the NHS after having spent a small fortune on private doctors and finally ran out of money. I am classified as being severely ill. This fluctuates from being bedridden/homebound to being able to go out for short trips.
    The illness fluctuates from being near death door and hardly able to move, to being mobile but limited. Not well enough to return to work in any capacity.
    I live on my own and find myself worrying excessively for a day or two, then focus on something else!!!!
    Although very restricted I am studying for a degree course. Frequent late submissions and constant exam deferment may not be productive but it certainly keeps me focused (when not having the brain fog) and helps keeping positive. During relapses, I look forward to upcurves, because there is something worth looking forward to.
    Otherwise, I do belong to two ME/CFS organizations but have not met any of the members yet. There is not much going on in my area concerning this. I suppose we are just all to ill, humm, or when well catching up.....
    This message board is certainly helpful, informative and fun too.
    Take care and greetings. Kooky.
  2. nickname

    nickname New Member

    .....hope it all helped. I'm bedbound too, but thankfully have husband and son to care for me. Don't have the capacity to do any formal studying, but research into this disease keeps me very 'busy' indeed. Have made some really good friends thru a local m.e. support group that eventually folded, but we all share info, pass on supplements/books etc, and are just generally there for each other, that type of thing. To be honest, these people are my life line, because they know the problems - all my well friends really can't relate to long term illness, and one feels more than a little isolated. This board is so good too.

    Anyway, keep in touch and happy researching.
    Best wishes