Good days and bad days

Discussion in 'Fibromyalgia Main Forum' started by CJR, May 3, 2003.

  1. CJR

    CJR New Member

    I have trouble getting my family (mostly my husband) to understand sometimes. I had a pretty good day last Thursday and I was able to help a neighbor move. I worked pretty hard and enjoyed helping them. But, as you all know, once I got finished I had to take pain pills just for the drive home and have had two days of increased pain because of it. But, it was worth it because I had fun. Now last night my husband said he thought I could get a job because look how I worked. If I could do that, there is no reason I could not get a job. I would like to work but, as you all know, there are days I can not get out of bed. Besides the fibro, I have inflamatory arthritis and osteoarthritis. My hips hurt if I sit or stand too long. My back hurts to sit at a typewriter more than a few minutes. If there were a job where I could sit or stand anytime I wanted and go for walks when necessary, or just take the day off on bad days, maybe, but I am pretty sure no job will put up with that. I know there is no answer and you all face the same thing, but I just wanted to vent.
  2. Shirl

    Shirl New Member

    It is so hard to have people understand how we live. One day we are fine, the next we are a basketcase.

    I had problems with my family for a longtime with just what you described.

    Finally I bought each one of my children (all adults now) a book on FM, then I read a whole book to my husband. They simply could not understand how I could be super woman one day, and in bed for three days afterwards.

    My husband would not have read the book, so every morning with breakfast (which he cooked!), I read him as many chapters as I could at one sitting. Finally he realized that this was going to be 'me' from now on, and pushing and telling me I could do this and that when I would say I could not do things went out of the window!

    He is now my best advocate, he is the one who will tell others that I can only do such and such, and I do not make plans in advance.

    I still have one son that really don't get it, or does not really understand. But he will take my word when I say 'no' to whatever he asks and I know it is too much for me to try to do.

    My daughter is still amazed at how I can still out do her with many things, but other times I can't move off the bed!

    Try to explain to your husband, or do what I did, read him a book, I used ' Fibromyalgia & Chronic Myofascial Pain Syndrome (A Survival Manual)' by Devin Starlanyl.

    When I got to all the symptoms, the trigger points, the fatigue, the pain, the sinus attacks, the IBS, headaches, sleeplessness, etc.
    He realized that I could have written this part of the book! All this was so familiar to him, as I had this for twenty years now, and we have been married for thiry years.

    He thought like everyone else I knew, that I loved to read so much, that I was up all night because I WANTED to finish the book or the sewing or whatever else I was doing in the middle of the night!

    Take care, and try to make him understand how you really feel.

    Shalom, Shirl

  3. fibrorebel

    fibrorebel New Member

    You are right most of us share that making people understand (especially those closest) is so hard. Devin Starlanyl's book is so good for that as she addresses the subject directly and even gives sample letters to give to family and friends as well as medical caregivers. My husband's worse hurdle is watching my situation and fighting off the natural instinct to want to fix it. It has taken awhile but he too is now my best advocate. In regards to your helping your friend you might explain that it gave you a temporary sense of being useful where this D.D. often leaves us feeling like we have lost our purpose.
    We all seem to need to do things occasionally that makes us feel better about ourself. Surely doesn't compare to working a restrictive full time job that could possibly cause more harm and progress our illness. We are here for you! love, Rebel
  4. kmelodyg

    kmelodyg New Member

    Welcome to the board! I know exactly how you feel. I have been out of work for about 6 months and I am only 25 years old. I have a rare day once and awhile where my pain pills actually work and I turn into "turbo-girl". I want to clean, play with my nephew, run errands, go shopping, whatever. And believe me, I pay for it big time!! But I just love to be busy!!I wish that I could find a job where I could work whenever I wanted to, come and go when I please. Mabye an office with a bed in the back room? LOLI get the same responses from other people about why I am not working. But nobody can really understand why unless they are going through this themselves!! DOn't thy know that we DO want to work!! We do not want to be lying around all day suffering? Mabye they will never know. All we can do is help to educate them and hope that they will come to some kind of understanding. Good luck to you. Take care and try to take it easy on yourself!!

    Big hugs,
    Kathryn
  5. CJR

    CJR New Member

    Thanks to all of you who replied. I will look into the book you suggested. I know we all face the same problem, but it is nice to here from others. I think we all go through the feelings of being alone and you all just proved that I am not.