Discussion in 'Fibromyalgia Main Forum' started by leokat, Apr 13, 2003.

  1. leokat

    leokat New Member

    Hello all. :-}

    only landed here a few days ago (though I think I was here before in another incarnation, on another pc – I forget, that is the way with this DD).

    I probably haven’t yet earned the right to consider myself one of you, to be counted as one of the ‘we’. Except that is in as much as:

    I am one of the millions worldwide whose days and nights are shaped, moulded, overshadowed and often blighted by an illness that no one can see, and few who do not experience it believe in or even try to understand. ‘We’ live daily with: pain, fatigue, weakness, sleeplessness, ‘brain fog’, nausea, irritable bowel syndrome, hypersensitivity to noise and smells, intolerance to certain foods, and so very much more. Yet ‘we’ are ridiculed, doubted, and disbelieved. ‘We’ are denied our rights to benefits, and adequate medical care. ‘We’ are often isolated and lonely. ‘We’ have had to learn to live within our means and energy and pain levels; for some of us the four walls that make up our bedroom or our home is our entire world. ‘We’ often have to lean more heavily than we would choose on our ever-decreasing circle of friends and family. Those of us who have to be in bed all day make a minute by minute super human effort just to breathe; just to be. Those of us who are able to get out of bed make super human effort to do whatever ‘we’ are able

    Not surprisingly ‘we’ sometimes get down and depressed about all of this. Then ‘we’ are told that depression is our real problem. Sometimes ‘we’ get to thinking that the doubters are right and ‘we’ go into self-denial and start believing that it is all in our minds. Well ‘we’ are only human after all. Only human maybe but what an amazing force ‘we’ are.

    ‘We’ have had to develop coping strategies that would leave many of our contemporaries breathless in admiration. Our illness means that ‘we’ have learned to cope with pain, loss, and disappointment. ‘We’ have learned empathy, understanding, and compassion. ‘We’ have learned patience and to believe in tomorrow – even when tomorrow seems so very far away. ‘We’ have learned the true meaning of life and to prioritise and value the important things. ‘We’ have gained knowledge way beyond our years. ‘We’ have each learned to juggle the balls of our pain, fatigue and other symptoms with what we want and are able to achieve. ‘We’ have learned both to bite our tongue when others doubt us and to stand up for our rights.

    You know I sometimes think that ‘They’ are afraid that if ‘we’ were ever get better we’d take over the world.

    I have a challenge for the medical profession. Isn’t it time that ‘we’ were afforded our rights? Time that the medical profession woke up to the reality that ‘we’ who have fibromyalgia syndrome and chronic fatigue syndrome have to face each and every day - These conditions are real and debilitating. They deserve to be treated seriously, so do ‘we’.

    Hmmm that turned into a bit of a sermon. :-/

  2. JLH

    JLH New Member

    your sermon! Welcome aboard. You should copy your sermon and include it in Jellybelly's bios that she is going to forward on to various places.
  3. wolflake46

    wolflake46 New Member

    Dear Leo,

    I couldn't have said it any better. I have FM, IBS, suffer from depression, on my days off confine myself to my bedroom to try and heal for the next week of work. You said it all.

  4. kmelodyg

    kmelodyg New Member


    That was a very good representation of "us". You are absolutly right. We do deserve to be treated with respect and be given proper health care. It can be so disheartening. Welcome to the board. Keep those insights coming!!

    Love and Hugs,
  5. Sandyz

    Sandyz New Member

    I loved what you said. It is so right on. I`m so glad you found us and joined us. Welcome!
  6. LeLeHpr

    LeLeHpr New Member

    That Sermon was right on!
  7. catnip51

    catnip51 New Member

    Could not of said it any better. As the saying goes "You hit the nail right on the head". Welcome to the boards.
  8. srollins

    srollins New Member

    And welcome to our own little corner of the world.

  9. nancyw

    nancyw New Member

    Well said, Leo. I allowed myself to be a "victim" again last week at a new Rheumy appointment and I have been doubting myself since then because I was told that depression caused all these symptoms and was not even given the tender point test. I was given religious and psychiatric counseling by this rheumy doc and told I had a "bad attitude". Was so humiliated that I let myself cry again and was unable to communicate. I definitely need people like you to bring things back into perspective. Thanks!
  10. kar1953

    kar1953 New Member

    for saying it like it is. I feel as you do but could never have expressed it as well.

    Welcome & good health........Kathi
  11. Harper

    Harper New Member

    You are so right! You have got it going on. I think perhaps we should all show your message to our docs!
    God bless!
  12. DragonBall

    DragonBall New Member

    leo you are an inspiration to us all.i dont believe in religion no god or gods help us we have to help ourselves!!.i dont pray to false idols i fight for my convictions.lots of love deb.
  13. NancyB19

    NancyB19 New Member

    I couldn't have said that better myself...
    [This Message was Edited on 04/14/2003]
  14. healthywannabe

    healthywannabe New Member

    I loved it!!! ITs what i felt but couldnt put in words! ALL of it is SOOOOOO true. PEople always tell me"are you just going to lay down all your life, get up," they dont understand, from now on i'll tell them to read your sermon!!!!!!Welcome to the board!....Zoe
  15. LW

    LW Member

    Hey Leo,

    It's OK to vent. I'm new to this board too. But I'm sure everyone here understands how you (and I feel). We've all been down the same road, and it's nice to know there are others like us out there.

  16. kerrymygirl

    kerrymygirl New Member

    In some of my posts when people say they can not go on anymore I told them to remember just to make it this far you have to be special and give yourself a big(lightly maybe) pat on your back each time you endure or conquer another day. You just put it so much better!! I have always wanted to ask this,what you said,to 1 of my docs and see how they would feel if they lost their career,family,friends,life you loved to live normal,plus all the rest that comes with.... Thanks Huggssss!
    [This Message was Edited on 04/16/2003]
  17. ellcee

    ellcee New Member

    I agree that you have said it all. You are one of "us" and I am glad that you wrote this. It tells how we feel and what we have to deal with every day. Thank you for sharing this with us.
    [This Message was Edited on 04/16/2003]
  18. kerrymygirl

    kerrymygirl New Member

    For Leo to be heard