Letter for Family

Discussion in 'Fibromyalgia Main Forum' started by rocky76, Dec 19, 2009.

  1. rocky76

    rocky76 Member

    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 flat on my back in bed and I might not seem like great company, 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 can't 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. I may be tired. I may be in pain. I may be sicker that ever. Please, don't say, "Oh, you're 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 up for five minutes, doesn't necessarily mean that I can stand up for ten minutes, or an hour. It's quite likely that doing that five minutes has exhausted my resources and I'll need to recover - imagine an athlete after a race. They couldn't repeat that feat right away either. With a lot of diseases you're either paralyzed or you can move. With this one it gets more confusing.

    Please repeat the above paragraph substituting, "sitting up", "walking", "thinking", "being sociable" and so on ... it applies to everything. That's what a fatigue-based illness does to you.

    Please understand that chronic illnesses are variable. It's quite possible (for me, it's 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, ask if I can and I'll tell you. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please don't take it personally.

    Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. Fibromyalgia may cause secondary depression (wouldn't you get depressed if you were stuck in bed for years on end!?) but it is not caused by depression. Telling me that I need some fresh air and exercise is not appreciated and not correct - if I could do it, I would.

    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 can't be put off or forgotten just because I'm doing something. Fibromyalgia does not forgive.

    Please understand that I can't spend all of my energy trying to get well. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But part of having a chronic illness is coming to the realization that you have to spend some energy on having a life now. This doesn't mean I'm not trying to get better. It doesn't mean I've given up. It's just how life is when you're dealing with a chronic illness.

    If you want to suggest a cure to me, please 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 Fibro 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 Fibro, if something worked we would KNOW.

    If after reading that, you still want to suggest a cure, then do it, preferably in writing, but don't expect me to rush out and try it. If I haven't had it suggested before, I'll take what you said and discuss it with my doctor.

    Please understand that getting better from an illness like this can be very slow. People with Fibro have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out.

    I depend on you - people who are not sick - for many things.

    But most importantly, I need you to understand me.
  2. AuntTammie

    AuntTammie New Member

    I've read this several times and every time it hits me again how true it is (except I am no longer concerned with work/school other than to wish that I were well enough to work)......unfortunately, though, the people we most need to have read it probably won't bother
  3. TeaBisqit

    TeaBisqit Member

    My mother used to torture me with the whole, "You were able to do it yesterday" thing. If I dared to make dinner one night, she wouldn't shut up about how I was able to do it, therefore I must be able to do other stuff, too. I was never really able to make her understand that just because I was able to cook something (albeit, trying hard not to collapse into the stove while doing it) doesn't mean I also have the energy to do other things or do anything the next day. Usually, that one little thing is it. Once I've done it, I'm done, too. And then I have to wait days till I have a little more energy again.

    One of the saddest things for me is that in the months before she died, my mother had suddenly decided that I must be better than I am. And she'd keep harping on me to do more and I kept saying I wasn't well enough. And she'd act like she didn't really believe me. I never knew where that was coming from, but I guess she was listening to one of her friends or something. I don't know. But she was after me to drive and stuff, and I really didn't feel well enough to be driving a car. And now that she's gone, I've had to do it. But that still doesn't mean I belong behind the wheel of a car with this disease. And it's getting harder and harder. I only go to the bare minimum. Grocery shopping once or twice a month, doctor's office, and odd errand when needed. And I barely make doing that. Then I'm down for days again. I just wish people understood that we really are not well enough.
  4. lynncats

    lynncats New Member

    I've always wanted to sned this to myson, long story, but I truly believe he would still not BELIEVE. Some people tell me to have no contact with him, but I would really love to send this to him/and his Wife.


  5. butterflydream

    butterflydream New Member

    Maybe this was a way of your mother to encourage you , such as the "you were able to do it yesterday". She may of not meant to intentially torture you with her words.

    i know i can not always say what i really want to say and at times it can just come out all wrong. Darn, wish i knew how to change that.
    I do know as myself being a mother i don't mean to harp, it's my way of being concerned with love.

    It's so good you can still drive to do the bare minimum needed. I totally understand being down for days after. i've come to the conclusion for myself, i don't need to try explain my days to others that don't understand. i am thankful i don't have to answer to others, no one is asking and i doubt i'd try to explain my illness to ones that i know would not have a clue.
    i live a quiet life.

  6. butterflydream

    butterflydream New Member

    Do what you feel is best. Follow your Heart.
    If you feel this is something you want your son to know , send him a letter. If you truly believe he would still not Believe, then question yourself to this may not be a good idea to do.

    For myself, i don't talk about my illness to my son. There's no need for me to go there with him. It would be so to speak, opening a can of worms.

    Wish you peace this Holiday Season
  7. lynncats

    lynncats New Member

    good to hear from you. I just withered waway, brain was thinking, but words are all now gone. Happy holidays, your always on mind mind.


  8. butterflydream

    butterflydream New Member

    AHHHH, You're special too Lynn

    Holiday Hugs