My letter to PWCS , PWFS , and PW?

Discussion in 'Fibromyalgia Main Forum' started by BILLCAMO, Jun 8, 2008.


    BILLCAMO New Member

    (You fill in the blank_____?).

    I've seen many good letters to "normals" , but I thought it may be time for someone to write one to "us".

    Yes , we are all sick from a variety of DD's that seem to be related. And it is also a fact that no one can truely understand us unless they are fighting the same battles.

    But , I've seen times when we don't understand each other or even ourselves. Every day and night , we face challenges that the rest of the world may only have nightmares about. Most of us also have to fight frustration , anger , depression , and a myriad of other emotions because of the DD's we have.

    Perhaps it would be in all of our best interests for US to try to get along better. Or , at least , try to control our emotions a little better.

    What prompted this letter from me is that the other day I replied to a post from someone that was angry. The post disappeared and I don't know if I answered the question to that person's satifaction , there was a glitch , or if the forum decided it was best to delete the post. It really doesn't matter in the whole scheme of things.

    I felt that my reply was at least 1/2 way decent so I'll try to pull some of it out of my foggy memory banks. LOL.

    No matter where you go , there you are. And no matter where you go there are rules. And rules are necessary. Otherwise the factor of chaos would come into play. Wouldn't it be better and easier for all of us to try to follow the rules rather than buck the system ?

    I , for one , could not handle the very tough job of being a moderator on this forum. Sometimes we forget that THEY are also facing the same challenges that we are fighting.

    But , I can say THANK YOU to them for all of the blood , sweat , and tears that they put into this site.

    There is more I wanted to say , but , the fog has rolled in and my concentration is leaving. So , I'll end this by wishing all peace and good will !

    Blessings ,


    (Of course , additions and replies are welcome since my brain just ran away....LOL).
    [This Message was Edited on 06/08/2008]
    [This Message was Edited on 06/08/2008]

    BILLCAMO New Member

    this tree fell in the forest & no one heard...... :>)

    Blessings ,

  3. marti_zavala

    marti_zavala Member

    But not sure how to respond. The infighting and snippiness of our population is very hard to deal with but our population does have issues with anger and frustration, irritability, stress, even desperation.

    This board is actually better than another board I have been on but I do see it here a little.

    Now that they are finding genetic polymorphisms for our illness, I joked to my son that they may find that ME/CFS have a polymorphism in the "Nasty" gene.

    I think this irritabilty due to the frustration we face has been the biggest hinderance to use getting help because it (along with fatigue) keeps us from pulling together like the AIDS population did.

  4. Marta608

    Marta608 Member

    When we step back a bit and take a breath we can easily see why we get so frustrated. For one thing, many of us have given up life as we knew or planned it. That often includes family and friends.

    So, often we're lonely. How long since you got a hug?

    We hurt. We're afraid that it will get out of control; meanwhile, Pain distracts us from Nice.

    We're beyond exhausted, so exhausted that we have times of barely functioning. It's often hard to think straight even when we try very hard.

    We're human. People have opinions and want to express them - especially here. We already feel we're invisible, so to not be able to say what we think makes it feel even more true.

    We live in a crazy world right now. Of course, we have a lot of company in this one, but what with pain and/or fatigue, we're often more sensitive to it.

    OK, so none of these things are excuses for bad behavior. If we find ourselves upset, it's time to get away from the site and the screen for awhile, if for no other reason than it's not good for us to be stressed.

    But at the same time and without self-pity, I want to say that I think we're all heroes. That all of us - moderators, founder and other members - deserve a great deal of credit for being here, for trying at all. We research for each other, we advocate, we hug, we dig down into our frustrated little hearts and exhausted minds to reach out to others who are hurting and, like us, want answers.

    We try hard. We're brave. Every day we see people doing with ease what it takes us so much effort to accomplish - and those people expect the same of us. Because people say they get it but they don't because they can't. I don't think I'd get it either if I didn't live with, around, through and in spite of it. Sometimes we whine (with cheese) but mostly we suck it up.

    And all the while we have no official, generally acceptable or respected dx!

    I say Hurray For Us!!!!!!!!!!!!!!!!!


    BILLCAMO New Member

    replies and the bump !

    Since I got sick , I've found it much harder to control my emotions. I just have to work harder at it.

    At least now the tree has been heard and it can be used to build a home or make some paper bags . ;>)

    Blessings ,

    [This Message was Edited on 06/10/2008]
  6. gapsych

    gapsych New Member

    It never hurts to remind us that we are dealing with this DD, and that it indeed can make us more reactive. I think recognizing this fact about ourselves, is imperative.

    Thanks for posting this and let's keep it bumped.

    [This Message was Edited on 06/10/2008]