Any advice on helping Family and Friend understand FM

Discussion in 'Fibromyalgia Main Forum' started by mariac2000, Sep 17, 2002.

  1. mariac2000

    mariac2000 New Member

    I picked out the candle because it is my son's first birthday today! Anyway..I am trying to get my family and friends to understand what I am going through. I spent so long hiding my pain that I guess they think it's not that bad, but to me it is. Are there any books or websites for family of FM sufferers? Thank you all for all of your answers and support. I can't even tell you how much it has meant to me. Wish I could thank you all individually, but I don't have enough time.
  2. mariac2000

    mariac2000 New Member

    I picked out the candle because it is my son's first birthday today! Anyway..I am trying to get my family and friends to understand what I am going through. I spent so long hiding my pain that I guess they think it's not that bad, but to me it is. Are there any books or websites for family of FM sufferers? Thank you all for all of your answers and support. I can't even tell you how much it has meant to me. Wish I could thank you all individually, but I don't have enough time.
  3. LisaMay

    LisaMay New Member

    Happy B-Day to your son!

    I always explain it to family/friends this way: think back to a time when you had the flu really bad and how your body racked with pain. This is how I feel every day, except more stuff is wrong!

    There are some fabulous books out there. Also, some good websites - try "my.webmd", or Fibromyalgia Network, and Co-Cure.

    Good luck!
  4. JaciBart

    JaciBart Member

    I just checked out the co-cure.org site, it is very good.

    This one seems to be the best for me though, I love the research articles.

    You might print out some of our posts, pick them carefully & try not to give them too much info at first, I have found most people don't want to hear about it, only the ones affected by it.

    Jaci
  5. jbg

    jbg New Member

    A letter to "Normals"
    I found this on a website and thought it was helpful to give out to family and friends....I hope it helps
    Julie


    A Letter To "Normals"

    Having FMS/MPS means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident , most people do not understand even a little about FMS/MSP and its effects, and of those that think they know, many are actually mis-informed.

    In the spirit of informing those who wish to understand......

    These are the things that I would like you to understand about me before you judge me....

    - Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit I probably don’t seem like much fun to be with, but I’m still me stuck inside this body. I still worry about school, and work and my family and friends, and most of the time I'd still like to hear you talk about yours too.

    -Please understand the difference between "happy" and "healthy" .When you've got the flu you probably feel miserable with it, but I’ve been sick for years. I cant be miserable all the time , in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or any of those things. Please, don’t say , "Oh, your sounding better!" I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome. Please understand that being able to stand for ten minutes doesn’t necessarily mean that I can stand up for twenty minutes ,or an hour. And, just because I manage to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With a lot of disease you’re either paralyzed, or you can move. With this one it gets more confusing.

    -Please repeat the above paragraph substituting "sitting", "walking", "thinking", "being sociable" and so on.... it applies to everything. That's what FMS/MPS does to you.

    -Please understand that FMS/MPS is variable. It's quite possible (for me, its common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen. Please don't attack me when I'm ill by saying "But you did it before!" if you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, it this happens please do not take it personally.

    -Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. Telling me I need a treadmill , or that I just need to loose (or gain) weight, get this exercise machine, join this gym, try these classes... may frustrate me to tears, and is not correct....if I was capable of doing these things , don't you know that I would? I am working with my doctor and physical therapist and am already doing the exercise and diet that I am suppose to do. Another statement that hurts is, "You just need to push yourself more, exercise harder..." Obviously FMS/MPS deals directly with muscles, and because our muscles don't repair themselves the way your muscles do this does far more damage than good and could result in recovery time in days or weeks or months from a single activity. Also, FMS/MPS may cause secondary depression (wouldn’t you get depressed if you were hurting and exhausted for years on end!?) but it is not created by depression.

    -Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now...it cant be put off of forgotten just because I'm out for the day (or whatever). FMS/MPS does not forgive.

    -If you want to suggest a cure to me, don't .It's not because I don't appreciate the thought, and it's not because I don’t want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped , all people with FMS/MPS then we'd know about it. This is not a drug company conspiracy, there is worldwide networking (both on and off the Internet) between people with FMS/MPS, if something worked we would know.

    -If after reading that, you still want to suggest a cure, then do it, but don’t expect me to rush out and try it. I'll take what you said and discuss it with my doctor.

    In may ways I depend on you....people who are not sick....I need you to visit me when I am too sick to go out....Sometimes I need you to help me with the shopping, cooking or cleaning.

    I may need you to take me to the doctor, or the physical therapist. I need you on different levels...you're my link to the outside world...if you don't come to visit me then I might not get to you .

    ...and, as much as it's possible, I need you to understand me.



  6. mariac2000

    mariac2000 New Member

    Jody,
    Thanks so much for the help. I can't seem to find the websitr=e fmawareness.com Do I have it wrong?
  7. mariac2000

    mariac2000 New Member

    Thanks so much. I thank my lucky stars I am not as bad off as that, but it is right to the point.
  8. garyandkim

    garyandkim New Member

    click on it and ask for 99 that's the max you can get at one time. Had them out, They will get a great mini view and theis sites web address and many others to. They can then go all over this place. As said above there are many links to under many of the docs on the Cp- Cure good docs list. That alone can take a month or two to go through and read all the great info. The best docs in the counrty are listed there on there to. But, there are some that arn't docs just chriros but, they know FMS CFS. That is what I would suggest. I had these out to every ones and docs to.

    Good luck, Kim and Gary
  9. Shirl

    Shirl New Member

    Like the others said, order the pamplets. They are a very good basic understanding of what we live with daily.



    Shalom, Shirl

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