Clinton was a one feels your pain but you

Discussion in 'General Health & Wellness' started by sandi1943, Dec 13, 2008.

  1. sandi1943

    sandi1943 New Member

    I guess it's just the way it is. No one can possibly understand anything unless they have personally experienced it themselves.... however .... I'm finding that even families have too little compassion, if any, for Fibromyalgia. I've been accused of "just wanting attention", "wanting sympathy", and I cannot even see my grandchildren who are nine, six, and three years old without "supervised" visits because I don't "act" like "myself" anymore! I was diagnosed with Fibromyalgia in 1991 and had no idea what that meant because I'd never heard of it. I had also lost faith in my doctors after paying mega medical bills and feeling like I was getting nowhere, but worse. Their Ho Hum attitude, and more prescriptions that just made me sleep more, made me feel like the word "Virus" might have been replaced with "Fibromyalgia", the "new age" way of saying, "I don't have a clue what's wrong with you." I was married when I had my two son's but got slapped with another label, "Single" mom after my divorce, and I also joined the millions of others that didn't have medical insurance. Medi-Care gave me hope, until I got on it, so, my bedroom became my "healing place" which consisted mostly of sleep, sleep, and more sleep. I could no longer work so my home is presently in foreclosure in CA. I moved to Washington State and rented a Duplex hoping that being closer to my son and grandkids would help, and that's when I discovered just how understanding my family is of this dibilitating, embarrassing, and very difficult to cope with disease. I pray more focus will be put on Fibromyalgia to at least educate the public, our friends, and our families so they will know it's not our fault. We haven't changed. We're still ourselves, very much so, but we do find ourselves needing more hugs and a lot more understanding because we're also in the process of trying to understand what happened that "changed" us, and our lives, too! I stopped trying to explain it people one day when a friend of mine looked at me, grinned and said, "Other than that Mrs. Lincoln, how was the play?" We both cracked up laughing because, well, that's what saves us women don't 'cha think? ;o)
  2. TwoCatDoctors

    TwoCatDoctors New Member

    Fibromyalia is not a way of saying "I don't have a clue what's wrong with you." By you saying that, you are perputuating the old stereotype and probably convincing others that nothing is wrong with you--and if you tell people nothing is wrong with you, they will believe you and obviously you have convinced them. But you have Fibro and it is a medical ailment. So it would help to get on the computer and start educating yourself about Fibro so that you are informed.

    It is not unusual for people with ailments of chronic pain like Fibro, lupus, R.A., etc. to go into depression and reach out to therapy for tools and help to get through. It might be a good idea for you to try therapy to help you get through everything.

    It is also never a good idea to just move assuming family will help with illness. You have to ask first. Your family probably wants you to do for yourself to force you to be independent for as long as possible. I have systemic lupus and am mobility disabled in an electric scooter and I live alone. Actually it is good that I live alone because I don't lean on others to do things for me and I make sure that I keep going and do all my errands myself--if I don't do them, they don't get done. I get bad lupus flares and I learned they do pass and I get good days. So tell yourself that you can strive to be independent.

    I also suggest you get on the Fibro board right here to learn more about the ailment and some of the things you can do to help yourself. Some light exercise is supposed to be very good and the right foods are important too. Take care.
    [This Message was Edited on 12/14/2008]