I won't dance , don't ask me

Discussion in 'Fibromyalgia Main Forum' started by megagrace2, Dec 14, 2002.

  1. megagrace2

    megagrace2 New Member

    I attended a wedding last week, and when the band began to play, my friends (2 of them have FM like me,) encouraged me to get up and try to dance. Well, we had a ball! Some days I cannot walk across the room, bending and climbing steps without severe pain and weakness is out of the question. As I began to dance, I thought, ohhh, I have to sit down--but pushed on. I figured I have so much pain anyway, why not "have a reason". After we sat down, a person came to me and said "Don't ever come to me and tell me about your back problems or fibromyalgia!" Why couldn't he have said something like "Gee, it's nice to see you are enjoying youself" or something of that nature. This person is an authority figure, and very legalistic and has no clue about fm. When I got home that night, I wrote him a long letter (which I have not yet given to him). Part of what I wrote was to explain that this dd is very, very unpredictable and YES, I have pain every day in every part of my body--but I don't complain to you nor do I want your pity, but you need to know some facts (I enclosed some fibro material). I told him that he made me feel as though I should "act sick" even if I am able to function for a while for fear of him and others thinking that I am faking it. Or I should "pretend" that I am NOT sick, since he does not think what I have is real. It really is a "catch 22" (Hope you are understanding what I am trying to explain to him). Upon re-thinking giving this letter, I decided "why bother?" How can he understand? I don't even understand it myself. Just wanted to blow off some steam. If people only knew when you are out there smiling or seemingly funtioning, that you hardly had the strength to even get there, and didn't even want to go and are praying that you don't have to run to the bathroom with ibs, or have a dizzy spell, or (my favorite) say something stupid, or have your leg give out, etc, ect.

    Thanks for listening
    Meg
  2. megagrace2

    megagrace2 New Member

    I attended a wedding last week, and when the band began to play, my friends (2 of them have FM like me,) encouraged me to get up and try to dance. Well, we had a ball! Some days I cannot walk across the room, bending and climbing steps without severe pain and weakness is out of the question. As I began to dance, I thought, ohhh, I have to sit down--but pushed on. I figured I have so much pain anyway, why not "have a reason". After we sat down, a person came to me and said "Don't ever come to me and tell me about your back problems or fibromyalgia!" Why couldn't he have said something like "Gee, it's nice to see you are enjoying youself" or something of that nature. This person is an authority figure, and very legalistic and has no clue about fm. When I got home that night, I wrote him a long letter (which I have not yet given to him). Part of what I wrote was to explain that this dd is very, very unpredictable and YES, I have pain every day in every part of my body--but I don't complain to you nor do I want your pity, but you need to know some facts (I enclosed some fibro material). I told him that he made me feel as though I should "act sick" even if I am able to function for a while for fear of him and others thinking that I am faking it. Or I should "pretend" that I am NOT sick, since he does not think what I have is real. It really is a "catch 22" (Hope you are understanding what I am trying to explain to him). Upon re-thinking giving this letter, I decided "why bother?" How can he understand? I don't even understand it myself. Just wanted to blow off some steam. If people only knew when you are out there smiling or seemingly funtioning, that you hardly had the strength to even get there, and didn't even want to go and are praying that you don't have to run to the bathroom with ibs, or have a dizzy spell, or (my favorite) say something stupid, or have your leg give out, etc, ect.

    Thanks for listening
    Meg
  3. teach6

    teach6 New Member

    Welcome to the board. You have come to a great place to educate yourself and also to vent when you need to. We all understand what you are going through.

    I think you made the right decision about that letter. It would probably only make the recipient mad and not really get him to open up to your ideas, since he seems to think he already knows it all anyway.

    Barbara
  4. JP

    JP New Member

    It's really great that you were able to move through your feelings, get them down on paper and name with such confidence and clarity. This is no small thing. For the most part, we are unable to depend on our bodies to function like they may have in the past. When they do respond to something as wonderful as dance, it would be horrible if you were unable to give yourself this pleasure because you should 'act' sick. More power to you!

    Take care!
    Jan
  5. amymb74

    amymb74 New Member

    For 10 years I have not volunteered any info. on my illness. As much as I would love to be out informing & educating my neighbors & friends, there are too many people that just can't commprehend the way my life goes. I often feel like I live two lives - its so hard on us. Be happy you had a good time & forget about this person. When my husband & I fight he sometimes says that I'm ignorant to the way the world works because I don't work etc.. and live such a sheltered life. I always think that it is him that is ignorant about the way the world works because he is able to work & do things. Some of my own family thinks that I 'have it made' - I would never expect others to understand. I hope you have many dancing nights ahead of you.......Amy
  6. pam_d

    pam_d New Member

    Welcome! Boy, we can all relate to this situation, or some variation. That's the hardest thing to explain to non-sufferers about FMS or CFS, that some days we can feel pretty good & accomplish a lot, then other days we can feel like crap & hardly be able to move. That's why so few of us talk about it to anyone other than family or the very closest friends, and even some of those people just never seem to "get it"....I totally understand your frustration....

    Hope you have many more dancin' days, Meg!

    Hugs,
    Pam
  7. achy

    achy New Member

    I understand your feelings 100%...been there, done that.
    first, any therapist will tell you to write a letter to the person that hurt you, just like you did. Sign it, put it in an envelope....burn it, and let it go.
    Don't waste your time and energy trying to explain something to someone who obviously doesn't care. If he truely cared about you or your health he would have made the other comment.
    I serve on a local board of directors for a place I used to work. I've known these ppl for 5 years. They have seen how this DD has changed me. I am at the office 3-4 times a month either paying my bill or for a meeting. Somedays I'll hear "oh boy, you must be hurting today" because I am barely able to walk, hanging onto the walls, etc. This past week we had our annual meeting. The next day one of the office staff called and said...wow, it was so nice to see you feeling so good last night! What did you do?"
    I told her....lots of drugs, I had to take it easy all day saving my strength. It took me three hours to get ready. Shower, lay down. Dry hair, lay down, makeup (that I rarely wear anymore and really made the difference) then lay down.
    She appologized for her ignorance...she said since I looked so good, she just thought i felt good too. I laughed and thanked her...I was hoping to look good and evidently all the time and effort paid off.
    Ok...went off on a tangent and now have brain fog...where was i going??? crap. LOL
    I guess what i'm trying to say is Dance lady dance....
    Warm fuzzies
    Achy
  8. JaciBart

    JaciBart Member

    explains this very well, just because we are having a good day does not mean it is gone, rejoice with us.

    I get the same thing from one family member, if I look too good and healthy then I end of explaining "no, I am not getting better, just a good day" and God knows we have so few of those.

    Jaci
  9. Mikie

    Mikie Moderator

    My rheumy was so amazed at my progress last week when I saw him. I told him that this illness is like night and day. When I'm in remission or having a good day, I can poke my thigh and it feels hard because I've been athletic all my life. I'm strong when in remission.

    When I'm having a flare, I poke my thigh (if I can stand the pain) and it feels all soft, like someone who is out of shape. My muscles are very weak when I'm flaring.

    How is it possible for one's body to change so drastically. It's a mystery. I told him that if someone were to only see me when I'm having a good day, that person would swear there is nothing wrong with me.

    Love, Mikie