FM/CF: The illness we all get to apologize for over and over

Discussion in 'Fibromyalgia Main Forum' started by JaciBart, Dec 3, 2002.

  1. JaciBart

    JaciBart Member

    Am I the only one who does this?

    If we had cancer or leukemia would we do this?

    Hell no!

    I feel like I spend so much time justifying this and defending myself, like I just am the laziest person on earth.

    I had to be at my church today @ 9:30 to help on a project and I left just sweating like a pig. Happens every day right after my shower for an hour or two, it makes me feel like I stink, I hate that.

    Staying home is just so nice when you feel like this, I have no social life anymore, I have a hard time facing anybody these days and yet I have to deal with speculation that I don't even have this DD.

    Just a rant, sorry.

    Off to the local support group meeting.

    Jaci
  2. JaciBart

    JaciBart Member

    Am I the only one who does this?

    If we had cancer or leukemia would we do this?

    Hell no!

    I feel like I spend so much time justifying this and defending myself, like I just am the laziest person on earth.

    I had to be at my church today @ 9:30 to help on a project and I left just sweating like a pig. Happens every day right after my shower for an hour or two, it makes me feel like I stink, I hate that.

    Staying home is just so nice when you feel like this, I have no social life anymore, I have a hard time facing anybody these days and yet I have to deal with speculation that I don't even have this DD.

    Just a rant, sorry.

    Off to the local support group meeting.

    Jaci
  3. selma

    selma New Member

    I understand how you feel. That's why I haven't kept in contact with friends.
    I feel paranoid. When I'm out I "look" OK. At home my body gives out. But, the times inbetween gross pain ,I'd think, Alright If I took a picture of me. I'd think she was OK too. Wish I could wear a cast.
    I live each day one momment at a time and as Oprah would say living my best life. I celebrate each little thing I do(like driving yesterday). I take care of myself now.
    I don't over do(not much anyway).
    You know the people who are blind have a card with info. on it. It would be nice if our card said FM/CFIDS and a short explaination.
    Prayerfully, and with Love, Selma
  4. Madelyn

    Madelyn New Member

    The way I look at it is this: People are people. Sometimes we expect a lot from them. They are just people living their very busy and difficult lives like we are.
    They don't have it easy either! Everyone has their own problems demanding their attention.
    I don't expect other people to understand. How can they? I don't put my problems front and center. If it comes up I respond honestly and briefly, and thank them for their interest.
    I also know that I don't need to be apologetic for what I can or can't do. You just have to decide not to worry about what people think.
  5. karen55

    karen55 New Member

    I understand how you feel. That's the main reason I tell very few people I have FM. Some family members understand and believe, my mom has FM also, but I try not to discuss it with her because she seems to think of it as a contest as to who has the most pains. Not even going there.
    I am fortunate, in that 3 of my 4 closest friends are very understanding; one is a home hospice RN, one does medical transcription so she is familiar, and the third has many of the same symptoms I have but has never received a diagnosis.
    Otherwise, I try to keep it hidden from other family members and people I work with because I feel like I have to justify and explain all the time, and many of those people think this DD is all in your head.
  6. Dara

    Dara New Member

    I totally understand what you are referring to. I almost "never" tell anyone how bad I feel. Mostly I have found that other people really aren't that interested in how we all feel, only themselves. The only ones who really care are the others who have the same problems as we do. I have a friend who has rheumatoid arthritis, and she's probably the only one who understands that when I say I will do something or go somewhere with her, then have to cancel that there really is a good reason for it. I have always been an over-achiever and now feel that others look at me as being lazy and just not wanting to work or do anything anymore, not true, as you know. My own sister tried to tell me that all I need to do is get out of bed in the morning and just take a hot shower and then I'd be OK, yeah right....

    Dara
  7. nct

    nct New Member

    ...ya know, it really sucks to have "friends and family" treat us like this.
    I'm lucky, I guess. I don't really have the severe and chronic symptoms many of you have. I seem to relapse now and then. But my boyfriend is wonderful, he understands. He has his own physical problems (not immune related), and encourages me to take care of myself.
    And my friends, well, several of them also have medical problems, including 1 with FM. Another has a rare aggressive form of rheumatoid arthritis.
    So we've all gotten used to, if need be, knowing we may not be feeling hot, and may have to break plans or change plans.
    Its just become a part of our lives that we deal with.
    As for my family, they all live far away, so it doesn't affect them much directly.

    Hang in there

    Nancy T
  8. pepper

    pepper New Member

    I know what you mean! I think we should wear a cast over every part of our body that is bothering us to give people an idea!

    However, I have learned to do what Chocolat has done. I expect NOTHING from anybody including my husband and kids, so that if and when they do show some understanding, it is a pleasant surprise. Friends and extended family too.

    The truth is when we look "normal" it is difficult for people to understand if they have never experienced something similar.

    I am going to make a confession. I look back on this now with horror but, unfortunately it is true. 2 yrs before I became ill, a teacher at a nearby school (I was a teacher) was off work with CFS. We thought she would be off for a month or two. (How stupid were we?) When that stretched into over a year, I remember participating in a staff room conversation about her that included some comments about it must be nice to be able to stay off work and sleep all day.

    I have since met that teacher and have seen how terribly ill she is even now and I feel so bad. However, my point is that if you haven't lived it you just don't know. And most of us don't take the time to find out about it and speak out of ignorance. I am ashamed of participating in that conversation. But I would hope that if I had known her at the time that I would have learned more about the illness and given her support as some of my friends continue to do 10 yrs after it hit me.

    Some people just don't want to learn about it though so you have to write them off and put on a brave face around them if you have to be.

    (((HUGS)))Pepper
  9. nancyneptune

    nancyneptune New Member

    My mom and dad are clueless about my fibro even tho I have told them a thousand times what it is. I go over to see them, they say something like,"Oh you STILL have that disease?" OMG. Or they say, you know that guy that mows your lawn doesn't do a very good job, why don't you mow it? ARRRGGG. I have started saying, in a very sarcastic way, "I have Fibro, REMEMBER!?" They know I have it but seem to think I should still work, mow the lawn, paint the house, wash the windows, etc. They drive me nutz.
  10. Milo83

    Milo83 New Member

    I am thankful for one thing, one of the people I love the most (my husband) does understand this..In the beginning when I would just say I hurt, tired, etc, I had my doubts..I wanted to believe him, but yet wasn't sure, so I did some research and he sat down and read everything I had printed..Now when he looks at me or sees my trying to do too much, he will always say, "Please go get some rest, I will handle it"..
    And I have tried to explain things to my 16yr old son, he says he knows I can't run him here or there all the time (when my husband is working), but yet I think it's hard for him to fully understand..
    As far as family, strangers, or friends, I really don't even tell them about the FM..It's just that I have learned in the past, they just look at you, like "yea right", so I figure the H*** with them..
    My mother has been in a nursing home for almost 2yrs..The office personal, nurses, etc.; especially this one office personal person always asks "are you OK, you look so tired", I just laugh, and say "that's my normal look"..Why get into it, some just think you are a whiner then.....
    I try to do my best when out among friends, family (which isn't too often), I figure, I just don't want them thinking I'm a whiner..
    Take Care.........Donna

    Even though my husband does understand, I still find myself always apologizing for not being able to get this or that done, he always tells me, to stop aplogizing; but I was always one who never wanted help from anyone and wanted to do it all on my own..........
    [This Message was Edited on 12/06/2002]