Can we make a choice bed or mobile

Discussion in 'Fibromyalgia Main Forum' started by charlie21, May 28, 2006.

  1. charlie21

    charlie21 New Member

    I have been thinking about this for a while, but not sure how to put it down in writing, so as not to offend anyone, which really is not my intention. I was wondering whether there is two ways to go. I have a friend who is often bed ridden because of CFS. Now I know if given the chance, I would so much like to at times, crawl into my bed, and stay their, as the life is sucked out of me at times, but I still somehow seem to keep on going, because my financial committments etc. I am wondering whether the choice we make to fight it or not, could eventually decide whether we live a life in bed, or we just keep on struggling with all the aches, but are still mobile nonetheless. If I thought I could get some financial help for this DD, would it be easier for me not to fight it, and rest easy, knowing that I really can rest now, and try to recover, or is it the financial aspect of it that is keeping me mobile. In the U.K., it is very hard to get benefits for FM/CFS, I think the USA is a bit more advanced on that front. I hope I am making sense in what I am trying to say, and please don't take it the wrong way. I suffer from FM/CFS. Fibro hugs Julie
  2. sfrazier

    sfrazier New Member

    Hi Julie, I actually have a friend of mine that has CFS and her name is Julie too. Her husband now will tell you that she couldn't stay awake to save her life. She slept for over a year. He would wake her up to feed her and then she would fall asleep again till she had to go to the bathroom and the sleep again. She is past that phase now and only has flair ups but I have seen her flair ups and she has seen mine and we can't decide which is worse. lol. Constant pain or sleep your life away. Either way they are both awful syndroms to have and you wouldn't wish them on your worst enemy....SueF
  3. Scapper

    Scapper New Member

    When I had FMS and I was inundated with pain -- I pushed -- difficult but do(able).

    However, when getting sick with CFIDS, the "choice" was no longer mine to make. A very very difficult concept to grasp. I think the only way to fully comprehend this illness and the inability to "push" is to actually "be that sick"

    I know it's hard to understand, but CFIDS really is that debilitating, for some, myself being one.

    Remember there are many degrees to every illness.

    scapper
  4. Hope4Sofia

    Hope4Sofia New Member

    I try to push myself and succeed sometimes. But there are also those times when I HAVE to stop. My body seems to shut down and that's it! It has also grown worse with time.

    I have FMS and probable CFS. It's the fatigue that brings me down. Although the pain can stop me from functioning actively, the fatigue stops my brain from working. I just can hardly speak.

    I can only assume that this is what those with severe CFS are experiencing all the time.

    Sofi
  5. hugs4evry1

    hugs4evry1 New Member

    I truly think many here don't realize that these DD's are different for every person here.

    What some may consider debilitating, others are years past that point and doing their best to make it through each day.

    But when you're really, really down....there is NO choice at all. There's simply no way to get out of bed and work, financial committments or not.

    You have to remember that rest has nothing to do with it. When I'm completely down, I can rest/sleep for 18 hours a day and it does NOTHING for me, because there are no restorative properties for me at all.

    To say that those who are stuck in bed just don't fight it means that you might not even realize the potentially debilatating effects of this DD on those who have had it longer.

    Many of us who are virtually housebound or bedridden used to push past what we knew was healthy years ago. We've already done that....now our bodies just won't let us anymore.

    Nancy B.
    [This Message was Edited on 05/29/2006]
  6. diva42597

    diva42597 New Member

    I agree with you completely. I have had fibro for five years and have found a way to manage it fairly well. I have my bad days and on my bad days it gets very difficult to manage. I have even lost a job because of the disease. But I always keep on managing. This is a dibilitating illness, but I truly beleive that pushing through it and not sacrificing doing the things we enjoy is very important. Although, this is not a mental condition persay, a positive mental outlook is vital. If we tell ourselves that we are prisoners in our homes, we will be. It becomes a self fullfilling prophecy. If we tell ourselves that we can manage the FMS/CFS without letting it manage us, we will find ways to control it and live our lives.
  7. justjanelle

    justjanelle New Member

    Although I do believe there are times we can keep pushing through (and pay for it later) there are times when there is literally no "push" left.

    I had symptoms of FM/CFS for about 7 or 8 years without finding a diagnosis. I just kept pushing, doing the things that needed to be done, and keeping up as well as I could.

    BUT -- there came a time when it all hit me really bad at once. I was so exhausted I was bedridden. If I got up to stagger to the bathroom, I'd barely be able to make it back to bed to collapse and nap again. Standing made me lightheaded. All my muscles were knotted up, I was in constant pain and could not sleep more than 45 mins. at a time. But I couldn't stay awake more than about 20 mins. at a time either. I wandered from bed to couch to recliner trying to find a comfortable place to rest. I couldn't take care of myself, let alone my family.

    The good side of all this was that it finally helped my dr. see that this was something serious, which led to my diagnosis and slow recovery to about 50% of what I should be.

    So what I'm really trying to say is that I don't really thing there IS a choice to make. I don't think anyone who is bedridden is making a "choice" to do that -- I know I surely didn't!-- It's not a matter of willpower, it's just that sometimes the illness gets so bad it just overpowers you.

    Think of it this way....If you get the flu you can sometimes keep going and get the kids off to school and make the meals and wash the dishes, even if you have to rest in bed or run to the bathroom a lot of the time. BUT if you have the flu bad enough, all you can do is rest in bed or hang your head over the toilet. It's not about your willpower, it's about how sick you are.

    Just my opinion, and not intending to hurt any feelings.

    Best wishes,
    Janelle

  8. KMD90603

    KMD90603 New Member

    But, I think I do so because I'm young and have so many things I want to accomplish in life. So, for me, it's morely that I'm stubborn and don't want to give in the disease. I have CFIDS, and I think sometimes I push myself too hard. I work part-time, I have a 5-year old son and a wonderful husband, and I'm in nursing school. So, alot of the time I feel I'm well in over my head. But, my body always lets me know if I've done too much (how nice of it!). When I have my flare-ups, it's bad. I'll be bed/couch-bound for days, run fevers, ache all over...the whole nine yards.

    The thing to remember is that there are varying degrees to both CFS and FM. I'm sure those who are bed-ridden would give anything to be able to go out and live a normal life, and perhaps at some point they were able to. And those who are fortunate enough to continue on despite the illness, we should never take that for granted. Because you never know, one day you may become bedridden as well.

    Anyway, I hope this made sense. I just woke up about a half hour ago and it usually takes me at least 2 hours before I'm fully functioning, lol.

    Gentle hugs to all (bedridden or not),
    Kim
  9. jole

    jole Member

    I have at times wondered the same thing, but I am convinced there is no choice to make. We who are lucky enough to be able to work may feel horrible, even feel sorry for ourselves because no one at work understands just how much it takes out of us to be there and continue to give 150% of ourselves to equal their 75-100%.

    But on the days I totally crash and cannot make it to work, cannot even walk to the bathroom without hitting the wall at least twice and the door once, and feeling like screaming because my muscles are all knots - well, then I fully understand. This is where some people are EVERY day.

    I wonder how any of us are sane any more. Between the constant hope for good days, which are rare, and the depression of pain and fatigue, I feel we are the very most special people on earth....and the only ones to really know this are the rest of us!!!!!

    I admire all of you soo much who are housebound for keeping your spirits up and finding even the simplest of things to make your days worthwhile. I sometimes think I will be there soon, and the Lord knows it's not because I-or you-haven't fought it.

    Friends - Jole