Advice for loved ones (pls help)

Discussion in 'Fibromyalgia Main Forum' started by Kacjac, Dec 4, 2005.

  1. Kacjac

    Kacjac New Member

    My husband is trying to understand Fibromyalgia, my kids don't have a clue, I think everyone has just sorta thought I was getting lazy all along. :(
    This has been a progressive, debiliating, exhaustive process, to endure, but an a invisible illness to the outside world, it seems!
    I do what I can, when I can!
    I wish,they would understand, that I'm seeking comfort and understanding and compassion, not "attention"!
    Any advice you could give them, or anything you could say that would help, I would be grateful for!
    Its so nice to be here,with you all that know what I'm going through, it's good to feel less alone in this journey!
    Gentle Hugz, Karen
  2. Kacjac

    Kacjac New Member

    Thank You for replying...we have been doing some research, but thought I'd see what you guy's had to say....I guess I was looking for comfort or moral support from here, thats all, Thank you again :)
  3. ksp56

    ksp56 Member

    Many on this board have gone through what you are dealing with,Karen. Here are a few things that you can share with your family. Also, in the search box at top of the page, type in family for the title. Hopefully, you will find many other posts from others dealing with this garbage!

    It is REAL! It does cause PAIN! It TOTALLY is NOT made up!Many of us have held down jobs for YEARS and are not able to work now. Or we work and come home exhausted, and hurting, and have to start over again the next day. This is on top of taking care of families, etc. It is a neverending cycle. It HURTS when people don't believe in us, especially our families.

    They are making medication for Fibromyalgia. Would that happen if it wasn't recognized by the brightest of the medical community? Maybe it would be good for both young and old, to research fibro and see what YOU find. Of course there are still many doctors who are ignorant. If you come across one, fire them and move on to someone who believes and cares.

    We know how hard all of these changes are for our loved ones. Believe me, it is devastating to us! Our lives are changed forever. Yours too. Don't make me feel guilty for something I can't help. When I feel that I can do something, I will. Sometimes, those are days far and few between.

    When you have had a bad toothache or earache, no one can see it,can they? Hurts, doesn't it? What if people didn't believe you? You SAY your ear or tooth hurts, but who can see other than your doctor? Imagine how frustrating that would be! That is how most of us are made to feel.

    It has been over two years since I found out what was wrong with me. Trying to find my way at first, was very hard. Overload was what my mind felt. We need to keep the lines of communication open, and not be questioned. Most of those with Fibro and CFS are Type A personalities ! Surprise, huh?

    If your family reads this Karen, I hope they will know I do feel compassion for them. I have children, a teen, and a 23 y/o. No, they don't like this. Either do I.. If they don't want to read info and become familiar with I am going through, I've done all I can do. I have told them to just 'Deal'! Their problem not mine.

    Fortunately my husband is very supportive and sees me when I am well and when I am not. I know it hasn't been easy for him. He knows too, it isn't easy for me.

    Karen there are many books that are worth reading. Your family too. One of my favorite is 'Fibromyalgia for Dummies'. They have them on every type of subject. They are easy to understand for all.

    The web is an invaluable tool! Many good pages to read and print.

    We all take this a little personally, can you tell? LOL This board is Heaven Sent! As are the members!

    PLEASE loved ones, don't tell me 'If you only exercised more' 'Maybe if you would lose some weight?' Yada yada yada. IF we are able to do any of these things, we will. On our body's terms.

    Whew.... Sorry this was so long Karen! LOL I could go on and on!

    The more research you do, the more empowered you will become!

    Hope this helps some! I look forward to getting to know you!

    Gentle hugs,


  4. Kacjac

    Kacjac New Member

    Oh thank you, thank you Kim......
    Don't apologize for being a long post LOL
    I'm long winded at times, and we should be, when it's time to get up on our soap box!
    Looking forward to getting to know you too!
  5. petsrme

    petsrme Member

    I just wanted to say welcome to you. I know how you feel. It seems to our loved ones that we have just gotten lazy. I wish I knew how to show them that they are wrong. You have found people here who know how you feel. I hope you love it here and find the answers you need.
  6. ksp56

    ksp56 Member

  7. gvmeabrk

    gvmeabrk New Member

    From my experience I never could get my husband to understand.He just could not grast the concept that somedays I seemed perfectly normal and other days I could not do anything.I even stopped talking about it all togather because it just seemed to repulse him.It seems to me like even my mother is in disbelief even though she expierences alot of the same things I do.I became so frustrated that there was absolutely no one that would hear what I was going through.I got tired of the rolling eyes and rude comments.I felt betrayed.I knew I was doing more than what I should be doing alot of the time,I knew I was going to suffer for the next week,or even longer because I went overboard.I think it is just human nature to not want to hear about someone elses problems.Of course the curiosity of someone elses bad luck is always there.I was spending alot more time trying to cover up the fact that I had something wrong with me.If I went to bed for 2 hours instead of one hour then I was being I started taking smaller naps just to appease everyone else.As for my teenage daughter she never hears a thing about my fibro until she hurts me by wrestling or horseplaying.She has her own set of medical problems but does not accept mine.It is very hurtful...and in some ways has made me a stronger person.I eventually rebelled against my husband and now I am divorced.He still does not know what hit him.I just got tired of animocity I was feeling towards him for not believeing in me.I figure that one of these days he will likely have a medical condition and I pray that he has someone beside him who will be there for him.Life for me is not easy right now being a single mother with this DD but atleast I do not have to watch rolling eyes and listen to rude comments.I got tired of feeling guilty about something I had no control over!