We do our best

Discussion in 'Fibromyalgia Main Forum' started by AdirondackScarlet, May 14, 2009.

  1. AdirondackScarlet

    AdirondackScarlet New Member

    But it does get tuff trying to PRETEND OK so others don't feel uncomfy.
    That sux.
    Wonder what would be the outcome if hundreds of thousands of us banded together and did a march, or walk or crawl..... on Washingtom AND the CDC.
    Bet we'd get their attention.
    Numbers speak volumes....
  2. AdirondackScarlet

    AdirondackScarlet New Member

    We need more attention and less ignorance.
    Maybe WE should educate THEM.
    Mass media attention could help us all rather than the incrimental
    media attention it gets then gets dropped like they might catch it if they even touch on the subject.....Fear? Ignorance? dunno----- it's just not right , not fair, and seems discrimatory.

    JEANSKI New Member

    I know alot of people know of someone who has it. But of course people are uncomfortable about ASKING about it. They follow the sick persons lead in this manner out of politeness. I think it is a disservice for people with this illness to keep quiet out of fear of what people may think or how they may treat us. We only are hurting ourselves. Not to say we shouldn't be cautious...their are some nasty people out there. But most people are just like you and me. Everyone has their "stuff". it's actually been nice because people have opened up to ME about THEIR issues. It's amazing what people are going through and you'd never know it by looking at them!

    I have a very matter of fact attitude in regards to my illness. It is what it is. I live the life I can. No apologies. Alot of people WANT to know because it DOES affect alot of people yet it's so hard to understand. I just let them know how I feel about it personally. They know I am in alot of pain and my sleep is effected by it, which makes a whole host of probelms. They know I deal with depression, I don't hide that either. I have a sense of humor about things too. People know they can joke about things with me which I think is important communication tool we humans use. I don't shy away from it. We have jokes at work about my "happy" pills...can they have some, have I taken them yet (when I am really moody). I don't get offended.

    Just my opinions and observations.
  4. Pippi1313

    Pippi1313 New Member

    I hate it when I have to put on my "howdy face" to go out in public.

    The worst times in my life, are the times I'm confined to a wheelchair. But at least, during those times, nobody says: "But you don't LOOK sick!"

    Dang. Whatta life, huh?
  5. AdirondackScarlet

    AdirondackScarlet New Member

    Your replies are very well worded, and of course, I agree.
    I've been hounding media for decades, even talk shows.
    Usually they just ignore me or skim over it..
    I've even told them I know in the back of their minds they are
    thinking, " Better you than me,Cindy. See ya, don't wanna be ya".

    The all mighty american dollar is what seems to matter the most to them, I outright tell them to wait-- they'll be thinking more about it if they get it and THEN they will know how it feels to feel so alone, alienated, judged wrongly and struggling.
    Too bad if it offends them, there's more of us than them.
  6. AdirondackScarlet

    AdirondackScarlet New Member

    Yep, I hate it too...
    It's our reality not theirs.
    Guess we are just stronger and have more grit than them.
    Some get sniffles or cramps etc..and feel the world should stop..
    Wusses.If they only knew.
    If they only had to walk in our shoes a week, maybe just one day,huh?
  7. Pippi1313

    Pippi1313 New Member

    Sometimes I don't even get to walk in my OWN shoes! LOL!
    (Yeah, I still joke about it sometimes.)

    You're right. Just the other day, a friend of mine with MS said nobody gave a D about MS until Montel got it. Then it was suddenly a big friggin deal, cuz "somebody important" got it!
  8. FMsaddenedspirit

    FMsaddenedspirit New Member

    boy you got that right. I try so hard not to show the pain I'm in, or, just how tired I am , walking through life prentending to be ok. When Im NOT OK Damit !!!!!!
    sometimes I think It's wrong to pretend . .. makes me feel weak when i can't hind it.. what a vicious circle.
    my family and frineds are pretty good about this DD and supporting me . its just I am trying to hide just how bad off i really am. I dont want to give up ,at first I would catch myself saying : It's not fair.. " but no longer tell myself that. didn't help at all. LOL

    I dont know I'm rambling I guess. ..I just always get this thougth in my head...

    "" The pain brings you closer to God. """ sorry I can;t Qt the verse right now. Fog ...

    and also " Jesus the pain he went through.. who am i to camplain right .... does this make any since at all ?

    you know I think I am just way to foggy to be of any good right now I best hang it up for the day . ... I'll check in with you all tomorrow. morning ..

    Love you all.... great Big Soft huggles. thanks for being my family and supporting me , I would be lost without you .

  9. lynncats

    lynncats New Member

    hey there. I saw someone's post on sleeping, and I told them to read your post. Hope you don't mind. I LOVE YOUR POST!!

  10. AdirondackScarlet

    AdirondackScarlet New Member

    Hang in there, I DO understand
    Rest peacefully
  11. AdirondackScarlet

    AdirondackScarlet New Member

    You do, huh? Thanks (grins ), I guess I just am so fed up with the who medical community's ignorance and profiting from pushing drugs that are SCAREY and not much help and the Gov. being jerks and the CDC
    not helping either when I see our numbers rising FAST..that I get ? cynical ? ... I've had about 30 years of this, ATLEAST. that's alot of time and experience.
    We are pioneers who need/ DESERVE answers, resolutions, solutions and HUGE apologies for our suffering being passed off, ignored, disbelieved, even scoffed at to the point we are forced to feel ashamed....HUH? If THEY won't get off their lame attitudes, we have to help ourselves--- results come with lots of squeaky wheels , the louder the better until we get the oil we need ( so to speak)....
    I dunno if you know, there was a guy years ago who suffered as did his wife with horrific chronic pain, he advocated adequate treatment for pain, OPIATES....Awesome if used wisely. He had websites about it, he was amazing and very awesome,THEY chased him off the internet,shut him down caused him lotsa problems trying to silence him. tho we had emailed quite a bit- after awhile we sorta lost touch- and he became bedridden and has since passsed away which saddened me deeply.
    i'm sure there is still info about him on the web and some of his 'insights' are still around. His name was Skip Baker.
    He helped me alot, he truly cared.
    Cindy with yet another no-sleep night.