Cognitive and Trouble Communicating

Discussion in 'Fibromyalgia Main Forum' started by TeaBisqit, Sep 25, 2009.

  1. TeaBisqit

    TeaBisqit Member

    Someone asked me recently why I don't fight for our "cause". If it's as bad as you say it is, why don't you fight?

    There are so many factors in why. And the ironic thing is, if I were healthy, I'd be an unstoppable ball of energy fighting for a cause.

    I have alot of trouble with communicating. I really think I suffer from some odd form of adult autism from this disease. Between the sensory overload, trouble with audio processing (not understanding anything because everyone sounds like they're speaking a foreign language), trouble forming thoughts or at least communicating those thoughts, and basically feeling like someone has a huge, thick blanket over my brain I really cannot "fight". And add to that the lack of energy and the pain and the lovely boughts of nearly blacking out from the drops in blood pressure, I really do not have it in me to be a warrior.

    As far as, what about on a "good" day goes, good days are rare. And even on a mediocre day, I need whatever tiny amount of energy I have just to do the small basic things in life to live. The laundry puts me down for days. Foodshopping also puts me down for days. Any amount of cleaning my place will put me down for days. And if I manage to over do it, which I've done this week, I'm once again down for days.

    I'm not a good candidate for "fighting", marching on Washington, calling senators and reps and making a nuisance of myself. I can no longer take phone calls. It's so hard for me to be on the phone for anything important. People just don't understand how hard it is. The amount of energy and concentration. I can't do it anymore. There are only a few people I speak to at all anymore on the phone and those calls are now rare.

    I also think that years of trying to explain the disease to unbelieving people has worn me down to where I just can't do it anymore. I had a well meaning neighbor tell me I should go to revival meetings and get faith healed. Cause ya know, we're just not praying hard enough. Yeah, right.

    I just can't do any of this anymore. I'm barely existing. It's an existence. It's not a life. I even had one idiot tell me that I do have a life, but I just don't like the one I have now. Yeah, right. I wouldn't call being stuck inside everyday and unable to do much of anything at all, a life. It's a cruel form of solitary confinement. I get to watch everyone else have a life. And if I dare try to do one normal thing, I pay in such pain and fatigue and agony that it's never worth it.

    So for all these reasons, I cannot "fight". I'm honestly not well enough. And it's too hard to fight a losing battle trying to convince healthy people that we are that sick. I'm sorry I don't look sick enough for the world.
  2. Oh do I so relate! REALLY, and NO ONE can understand other than the people here!
  3. TeaBisqit

    TeaBisqit Member

    I trusted the CFIDS Association to do that for us, and I've seen no results after all these years. Their Chronicle only seems to be them patting themselves on the back for whatever money they have raised or whatever that we never see. And their site is horrible for directing healthy people to so they can get info about the disease. It doesn't in any way deal with the severity of the disease. They downplay it. And we still never got a name change.

    We do need someone strong to fight for us. But I have yet to see anyone come to our aid. And those celebrities who have this disease, they hide it. They don't want to be labeled with it. We have no real champion. And we desperately need one.

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