How many of us are completely disabled?

Discussion in 'Fibromyalgia Main Forum' started by kholmes, Dec 5, 2005.

  1. kholmes

    kholmes New Member

    Except for short rides and short walks to the kitchen or living room each day, I have been bedridden for eight months with a second relapse of CFS. I was wondering how many others are or have been completely disabled with CFS or Fibro.
    How do you deal with it?
    Thanks.
    Kholmes
  2. dononagin

    dononagin New Member

    complete bed rest for the first year. I went back to work after the first year part time and gradually worked up to full time. I did have to change jobs at one point as I couldn't physically handle being on my feet anymore. Now I am in an office setting the majority of the time. I book meetings and events.. weddings etc. for a major restaurant. There are times I worry that I won't be able to keep working.. but so far I've made it one day at a time. I know I can't keep this up forever...
  3. stinker56

    stinker56 New Member

    I'm not sure you would call me "completely" disabled but I am not working and have not for a year now. The rheumatologist says he doesn't feel I will ever be able to hold a job down again and I have applied for SSD per his idea. Some days I can do some housework or go somewhere and somedays, I can't do anything more than get out of bed and move to the couch. I have needed to go to the grocery store today but so far all I have done is take a shower and pay some bills. It is cold and walking to the mailbox to mail the bills just about did me in so I really doubt I will make it to the store today. Good thing I have a really understanding husband and son. Hope this answers your question.
    Stinker56
  4. Dalphia

    Dalphia New Member

    Just wondering how come you are sleeping so much. My, it would be so nice to be able to sleep in my case..........
    Do you take medications that could possible be causing this sleeping...........or, is it that you body is just so phycially drained that it stays in the sleep mode..........

    Really don't know which is the worse, sleeping or no sleep at all.

    Hope you do get to feeling better..........Bless you.
    Dalphia
  5. PepperGirl52

    PepperGirl52 New Member

    what everyone would qualify as 'totally' disabled. I, too, sleep 10-12 hours/night, and take a 2 hour nap every day. I go out very rarely, pace myself like crazy!

    In other words, if I went to Walgreens to pick up my rx's today, I have to take the next 3 or 4 days off and stay in the house, or I'll be in double the pain! Every thing I do, there is a price tag on it.

    And when I overdo, I pay for it dearly. Not even doubling up my meds can touch that pain.

    But on 'good' days, I can go out, get groceries, shop for about an hour or two, and that's it. So, I guess I'd be running a close 2nd to your category. PG
  6. JLH

    JLH New Member

    I would consider myself "completely" disabled even though I am not bedridden, but not totally due to cfs or fibro, but cfs and fibro are IN ADDITION to many other disabling conditions that I have.

    I say that I am completely disabled because I am no longer able to work at my former job outside the home, I can no longer do the routine jobs of a homemaker--such as cooking and cleaning, I can no longer walk or stand for more than a couple minutes, and I basically need assistance with nearly everything that I do.

    It is hard to deal with. I still TRY to do what I can. I make an attempt at cleaning the house--completing a few MINOR things in one day is good for me. I make an attempt to cook easy things, but only if I can prepare them sitting down! I have had to think of different ways to accomplish the things that I need done. And .... I have to summons assistance with things that I can not get done. And ... some things just NEVER get done. It stinks.

  7. CinCA

    CinCA New Member

    I have CFS, and I guess I am doing well in that I sleep maybe 8-10 hrs. a day and don't nap. But I feel absolutely awful almost 100% of the time, and I get through many days by sheer will alone. I have a very high-needs 4 y.o. daughter who is really hyper and never stops, and my husband thinks it's all in my head and I feel bad because I don't eat well and don't exercise. I don't crave food at all, ever, except the loads of Coke or iced tea I now need to have some degree of mental clarity and get through the day. I hate having to do this, but I have way too much going on (we are moving in a couple of months). I do try to eat something every few hours, but it's hard. I always feel like I am on that verge of getting sick, where you have no appetite and are really sluggish.

    When I do nap, I can sleep a very long time and then I'm up at night. I'm up anyways, every single night between 2 and 3. I think I have slept through maybe 5 times since my daughter was born over 4 years ago. I even tried various sleeping drugs (and natural remedies), and I still woke up. I've given up trying to solve it...I've tried everything. Maybe someday....

    My house is a wreck. It's all I can do to stay reasonably on top of laundry (including daily doing my daughter's now, as she keeps peeing in her pants), and keep the dishes from piling up. But everything's dusty and dirty, and even though it really aggravates my allergies, I don't have the energy to deal with it. Hubby won't hire a cleaning person, and honestly I am too embarrassed. But I don't know how I'll do it when we have to keep the house totally clean when it's on the market. My realtor is so sweet...she is paying for a cleaning crew to scrub down everything right before it goes up for sale. I wish I could get a gardener to help with my plants, which are suffering along with me, but they all are overpriced and not very good. At least most of my plants are on a sprinkler system, although again I'll have to prune everything before the house goes on the market, and plant new stuff where things have died. I used to have such a beautiful garden...I almost cry whenever I go outside now, because working there gave me such joy and now I'm ready to just lie down and sleep on the ground after working 10 minutes outside. I get so, so tired.

    About the only thing I get done is type e-mails and check this website occasionally. I get "stuck" on the computer, though, and zone out (TV, too), so I have to limit it.

    I fantasize about going back to work when my daughter is older, but I don't know if it will ever happen. I try to be happy, but sometimes I wonder if I will ever be healthy or even see my daughter grow up (and I am only 36). I was always very thin my whole life, but now my weight is so down my jeans literally keep almost falling off me, and I look awful. But nothing tastes good, and my tummy is constantly upset when I do eat something. I know it's more physical and fatigue than mental/depression...I really try to "think positive" as much as I can, and this is much different than the cyclical depression I had earlier in my life (which I think was tied to oral contraceptives/hormone levels...it stopped when I stopped taking them).

    I guess I should be very grateful I am not on bed rest. But part of me wonders if that would help me feel better, because I just can't stop given all my responsibilities, really. I hope someday hubby understands and I do get the time I need to rest. I am working on it.

    Good luck, and sorry I'm rambling so much tonight. Hang in there!
  8. lease79

    lease79 New Member

    I'm pretty much housebound. The last two times my husband has driven myself & the children 2 hours to Adelaide I have ended up VERY sick just from the drive. The first time I ended up spending most of the night in hospital & the last time I just 'rode' it out & felt terrible.
    I can drive very short distances, but get disorientated, & extremely tired.
    A quick drive to the shop will wipe me out for the rest of the day, & possibly the next week or so to follow.
    I cannot do shopping at all, as I cannot physically push a trolley. Same for my sons pusher :(
    Most of my day I try to gather my strength to pick my children up from school & kindergarten. You have to walk into the kindy to pick your children up & that alone gives me the spins.
    My hubby gets the kids up, dresses them, feeds them, & at the moment even drops them to school & kindy.
    So although I am not totally bed bound at the moment, I am pretty much housebound :(
  9. jaltair

    jaltair New Member

    Afraid that I may soon be disabled.

    I work full-time and am on intermittent FMLA. I miss work too much and feel guilty when not there. I too have the sense that others aren't too happy with the way I am since the FMS and CFS are really visible or accepted ailments by many. Every day I make myself go to work and totally collapse at the end of each day.

    I know that the time is coming when I won't be able to get up and go, or be able to work. Even part time. I'm trying to hold out until I can retire iin 1 1/2 years, don't know if I will.

    I'm 59, so older than many on the Board. This problem has been ongoing for the better part of my life. Really bad now.

    The only way that I've ever dealt with this is through sheer determination to continue working and doing.