need advice about family members

Discussion in 'Fibromyalgia Main Forum' started by tdesha, Oct 4, 2008.

  1. tdesha

    tdesha New Member

    I am 19 and Ive had fibomyalgia for 2 years. I now share an apartment with my 21 year old sister who also has a lot on her plate because she has a four year old daughter. She is constantly getting angry with me because she wants me to clean all the time and she thinks fibromyalgia is "an excuse" to not clean every time she wants me to. I am a student and also work 25-30 hrs a week and she fails to comprehend that fibromyalgia is not an excuse at all, that it is actually a very painful and exhausting and difficult to live with. If anyone has advice please let me know.
  2. mysticbrit

    mysticbrit New Member

    If you look at the top of the board you'll see a thread with a number of Ways to Explain FM/CFS.

    You're so young, I'm sorry FM has caused you so much pain and that your sister is so hard on you.

  3. 3gs

    3gs New Member

    read some of the things on this site.

    Tell her just going to school and working is a huge challenge. bravo for you!

    Does she work? Family can be hard sometimes'cuz you look ok and going to school working so why can't you also super clean? Tell her dust never hurt anyone and split the cleaning fairly. There's more with a 4yr old!

    Hope you can get her to see the light!

    hang in there
  4. tdesha

    tdesha New Member

    Thanks soo much for the advice!!
  5. tdesha

    tdesha New Member

    Thanks soo much for the advice!!
  6. quanked

    quanked Member

    be very hard on family. I know it is tough. If it were you I would put my best effort out to provide her with info on fm. Then if she still cannot understand my vulnerable position I would find myself a different living situation in which I have supportive people around or at the very least try living alone. Most fm sufferers are in no position to take on more responsibility when trying to meet one's own needs is difficult enough. I would not be offering to split the work down the middle unless I believed that I could actually follow through.

    I am so sorry that you have contracted fm at such a young age. Not that is wonderful to contract when one is an old bag : ) Good luck tdesha.
  7. tdesha

    tdesha New Member

    thanks for the advice i appreciate it a lot.
  8. ABLUV

    ABLUV New Member

    Hi, there was a previous post called "letter to normals". Maybe you can give a copy to your sister or let her join you on the net sometimes when you are surfing this site. I cut and pasted the letter for you. Here it is:

    The Open Letter To Those Without CFS/Fibromyalgia

    Having CFS means many things change, and a lot of them are invisible. Unlike AIDS and Cancer, most people do not understand even a little about CFS 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 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 than 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. CFS 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. CFS 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 CFS 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 CFS, 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. He's open to new suggestions and is a great guy, and he takes what I say seriously.

    Please understand that getting better from an illness like this can be very slow. People with CFS 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.