I'd appreciate advice for Norms....

Discussion in 'Fibromyalgia Main Forum' started by anniec345, May 8, 2006.

  1. anniec345

    anniec345 New Member

    I want to raise awareness of CFIDS/ME by writing a booklet meant for the SO's (significant others) and family members of people newly diagnozed. This is because I've seen what's happened with my brother over the last 20 years of his illness, how hard it is for people to understand and how hard it is, frankly, for Normals - like me - to live with (especially in severe cases). I've seen people drop out of his life or avoid coming into his life; I've watched and helped him struggle to remember how to get places that he knows where to go - it's a terrible illness. I've also worked with a wonderful woman whose FM made it really hard to get her work done - and as her supervisor, i had to figure out how to help her get her stuff done. Very hard. I've also seen the great generosity and spiritual groundedness of CFS and FM persons - and have seen myself grow in understanding. But that's because I've lived with it. I'd like to help out new "norms" so they have some idea of how they can react to keep the relationship going. <----Do you think that part is possible, long-term? It would be great if #1: a cure was found or #2 a reliable treatment was found or #3 there was money to pay for the things that the sick person can't do - clean house, get to the grocery store, cook, write down a list of what's needed to buy a the grocery store. All that seems very very far away. I think that Normals need a support group, too - but I haven't found one yet. I'd appreciate any input or advice from anybody. Please forgive me if I've been presumptuous in any way. Thanks.
  2. Juloo

    Juloo Member

    I've had to slow down A LOT having CFS. But before that, I experienced what it was like when my mother was recovering from a brain aneurysm, and I nursed her through surgeries and radiation following a cancer diagnosis. I saw a lot of the same things you have witnessed both being the friend of- and supervisor of- people with CFS/FM.

    You're right in that Normals need a support group, too. Being a care giver is a tough, tough job. My husband doesn't know quite what to do with me (and I'm pretty high functioning -- still working 20 or so hours a week and taking care of our son and our house). Even having a friend whose sphere of living descreases considerably by necessary conserving of energy can be a disheartening thing -- for both people in the relationship.

    You sound as if youre aware that learning to accept new limitations is something that people w/CFS & FM have to confront. I'd say people go through this at different rates, but it is, in effect, grieving. In the meantime, Normals may not be aware that the loss of functioning (physical and mental) may be long-term, or even permanent. Trying to live up to 'what we were' and falling short is painful -- we fail ourselves and others, who remember us 'before'.

    If I were you, I'd take a look at similar booklets in other disease areas -- maybe MS or Lupus -- if there are such a thing. I'm hoping that some others here have some more intelligent answers than mine -- it's Monday morning, and I'm not quite cranked up to full mode today yet!

    I do applaud your drive to confront this issue. I wouldn't expect it to be light and perky, either. All of us here know that we have our off days (and some of us quite ofter), and we're not exactly fun to live with when we're basically aching lumps!
    [This Message was Edited on 05/08/2006]
  3. smiffy79

    smiffy79 New Member

    use the spoon theory - very good

    and i cant read your post, break it up a bit.
  4. UnicornK

    UnicornK New Member

    has an entire chapter on FM directed to family and friends of PWs. Very informative.

    Also, the spoon theory is excellent.

    I also tell norms how the pain is. "Like when you have the flu is a good day for me. You can imagine what a bad day is like!"

    God Bless.