Heart Attacks, Cancer, Etc. Recover Resume Normal Lives, Not Us

Discussion in 'Fibromyalgia Main Forum' started by greatgran, Aug 29, 2008.

  1. greatgran

    greatgran Member

    Since I have had CFS/FM I can not remember a day when I felt like my old self. Sure I have better days at times, but even on my good days are nothing like they use to be.

    Guess you can say I haven't had a well day in 8 years.

    Now, my point, My family and myself see those who have had serious illness such as heart attacks, cancer and many other types and in 6 months are back to working and being the person they once were. Maybe not every case but most.

    I had a neighbor that had a heart attack, breast cancer in both breast, back surgery all this within a couple years and she is our shopping and doing her thing.

    What was said to me, look what all she has been through and see all she is doing etc. Whats wrong with you.

    Why can't we just become ill for a year or two if that long, then get well. With each passing year I seem to be getting worse.

    Just venting as I get so tried of never feeling well.

    God Bless,
  2. jami117

    jami117 New Member

    Thanks for your post. This is one aspect of our illness that is most difficult for me. There's nothing in my power to do to get well, and, like you, I'm just getting worse as the years go by.

    It would help so much if my friends and family could realize the magnitude of living under these circumstances. Not that I want constant sympathy, but if they could just realize that I feel miserable every day of my life and when I talk on the phone I can usually muster enough energy to sound better then I am. And when I have visitors, I push myself to the max, being in pain and confusion the whole time, and knowing that I will suffer more than usual for several weeks after the visit. And that when I can push through the pain to go to the grocery and the library, it's not because I'm feeling good - it's because this is probably my life forever, so I try to do some normal things regardless of the price I pay.

    Anywhoooo - thank goodness you're here, Greatgran, and all the other great understanding people on this board, so I don't feel alone in my fight.

    Sending you soft hugs and understanding.
  3. pam_d

    pam_d New Member

    ...you're feeling so frustrated and discouraged; I feel for your pain.

    I just had a bone marrow transplant a couple of months ago, after having leukemia for 2 1/2 years. Trust me, it's no walk in the park, either physically or emotionally. And you're not "back at work and being the person you once were". Not for a long time, if ever.

    Broad statements about other "cancers" have always bothered me. All cancers are not created equal, I'm afraid.

    Anyway, I do hpe you start having some days where you feel better soon.

  4. Malcolm82

    Malcolm82 New Member

    Especially the comparisons by other people, like you mentioned. It makes me feel like knocking their block off when I hear it.

    Then I realize I might be thinking the same thing if I were them looking at me, although I would never say it out loud.

    I really don't see how anyone can understand how we feel unless they are living inside our bodies, especially when most of us don't look as sick as we are or are putting on our "good face" so others around us don't feel uncomfortable.

    I can do the "good face" thing for about five minutes. Just the extra exertion from that can bring on a wave that can last from an hour to all day.

    I am sure I'm not alone when I say that ever since I got sick, I have wanted my doctor to say something like "it will take about 6 to 8 weeks for you to recover, then you should be fine."

    But we are stuck with the unknown. I don't know, but it must make us stronger if we can learn how to cope with it without taking an overdose of pills or blowing our heads off.

    That is an accomplishment we can all be proud of!!
  5. greatgran

    greatgran Member

    Thanks for your replies and understanding.

    Pam, I am so sorry to hear about your leukemia and the bone marrow transplant and with the darn FM , you are truly a fighter. I am sure what I go through is nothing compared to all that is going on with you. What is your progness with the transplant? I do wish you the best.

    Jam and Malcom, Yes just trying to do simple things wear me out and I pay for it. I try to put on an "act" then collaspe later.

    God Bless each of you,
  6. greatgran

    greatgran Member

    I am from the southwestern part of VA near the NC line.

    Thank you, those are my three grands and two greats I think they are special but we have our problems.

    Yep, this DD is a mystery.

    God Bless,
  7. aftermath

    aftermath New Member


    I've had this thought as well.

    Lance Armstrong nearly died of cancer. Still, when he got better, he went on to become a world-class athlete again. Yet a majority of us never improve at all.

    Many of the few physicians who recognize this illness have commented that it is worse than anything by late stage AIDS or Cancer.

    Yet the funding for research for us is near nothing.

    And most of it is OUR OWN FAULT in that next to none of us join the two major organizations who are lobbying Congress for money on our behalf.

    From Phoenix Rising
    <blockquote>Over dinner at the International Symposium on Viruses in CFS two prominent, longtime physicians lambasted the inactivity of ME/CFS patients. One went so far as to state they were basically allowing themselves to be locked into cattle cars without protesting (!) He said that at least he would try and make a run for it.

    Strong words ,yes, but with only 2-4% of diagnosed ME/CFS patients actually contributing to their national organizations they resonate. By not fully supporting these organizations chronic fatigue syndrome (ME/CFS) patients have left their fates up to a national medical agenda that has no place for them. They’ve ceded their power to government officials who have time and time again demonstrated they have no interest in ME/CFS. Whatever anyone’s justification for not supporting these organizations the result is the same - a loss of power – and an enfeeblement in an environment which is hostile to our interests.

    I know that money is tight for most of us. Still, the $30/yr to be part of either the CFIDS Association or IACFS is the #1 thing any of us can do in the hope of ever getting better.

    The budget for our research couldn't buy the toilet paper at the MS or Autism labs (forget about AIDS or Cancer). Unless we band TOGETHER as part of these groups, it will NEVER change.

    I joined the CFIDS association last year. Who else here is a member?
    [This Message was Edited on 08/30/2008]
  8. Forebearance

    Forebearance Member

    I appreciate what you are feeling, greatgran.

    I'm so sorry about your leukemia, Pam. Bone marrow transplants sound incredibly hard. I hope you will feel better in the future.

    One thing that has been annoying me lately is the commercials for allergy medicine that talk about how horrible it is to waste hours of your life having allergies. HOURS??? How about losing years of your life!? That's what I always feel like saying to the TV screen. lol


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