On disability for CF, but what is considered "OK" to do? Please help!

Discussion in 'Fibromyalgia Main Forum' started by hollandtx, May 3, 2010.

  1. hollandtx

    hollandtx New Member

    Hello everyone...I haven't posted for a while. 3 years ago I was lucky enough to be given SSD on my first attempt, as well as extended disability from my workplace which is reviewed yearly.

    So far, I have been honest, as well as my MDs, and I have had no problems with continued receipt of my workplace disability. I am up for SSD review in a few months, and also for workplace, and I have a serious question that I hope ya'll can help me with.

    My symptoms seem to cycle from a few (3-4) months where I can't do much of anything, to a period of a month or so where 2-3 days out of a 7 day week I have a bit more energy than usual. During these days, it is possible for me to take my dogs for a walk, work in the garden, run a few errands and maybe see a movie or go out to eat. I don't need to sleep for 16-18 hours and feel semi-normal. Even during these times though, I can only be active for a period of 3-4 hours max. This goes away after I participate in these things because I tend to over do. There is no reliability or sense of when I will go down hard--my cycles are very unreliable.

    Anyway, my question is: When you are on Disability, are these things ok if done occasionally? Some of my friends, and even one of my MDs is always telling me that "they" might be taping me or something. My answer is, "bring them on" as most days I am in my home, sleeping or watching tv. As an ex, my 2007 car has less than 5000 miles on it.

    But I am slowly going crazy, and feel like I am in prison as many of you may understand, and I am starting to get paranoid on the few days I am able to be outside, esp walking/slow jogging with my dogs.

    For those of you that have been on disability for a while, what is within your normal bounds?
    If you felt physically able for a few days, would you feel comfortable volunteering a few hours somewhere? Taking a yoga class? Signing up for a class on-line?

    I am in no way cheating the system, I guess my bottom line question is: If you are getting disability, are the expectations that you sit in your house 99.9% of the time and if you can walk a dog, etc. that means you aren't disabled.

    Thanks so much for your input, I have no one else to ask or who would understand. Also, if you have gone through the process of re-applying for disability after your 3 years, could you let me know if that is a big deal or if you are often cut off?
    I'm not asking that much, right?! : ) Take care, Jill
  2. HeavenlyRN

    HeavenlyRN New Member

    You've asked an excellent question. I am just on short term disability right now from my job but I'm bumping this post up in the hopes that you get more replies. I'd be very interested in the answers.

    Good luck.
  3. AuntTammie

    AuntTammie New Member

    I would say that honesty is the best policy. I totally understand your concerns, but in nearly every disability out there, people are still able to do some things some of the time, unless they are completely bedridden. When I applied for SSDI, I was able to do a lot more than I can now, but I was most definitely still disabled by their definition. I was extremely honest in everything I wrote and I told them the things I could still do, as well as the things I could no longer do. I also mentioned how much symptoms and abilities fluctuated, and how unpredictable that makes things.

    First of all, I think that in a lot of cases, they are actually going to be less likely to believe people are telling the truth if they really paint an incredibly horrible picture of their lives (no matter how true that picture may be, most people simply do not believe that we can really be that bad off, and if they think we are exaggerating the bad, they are less likely to believe that we are truly disabled.....not sure if that makes sense).

    Second, I did not want to risk the possibility that they would somehow find out that I was doing the activities that I was and then come back and try to say that I committed fraud or anything. I made it clear that I was still doing some things some times, and thus if anyone did see me doing those things, they could not say that I failed to tell them.

    And, third, I could not have lived with myself if I was not honest on my app, no matter how much I needed the SSDI, and I would have also hated feeling worried that I might get "caught" getting groceries, or something.

    Anyway, I got SSDI on the first try w/o a lawyer, and have also had one three yr review with no problems. I have become increasingly worse off, but I do still manage once in a long while to do a few things, and I never have to feel like I have to watch my back when I do make it to the grocery store or to do laundry.

    I do know that with work related disability, they have been known to be more aggressive with checking up on people, but I still think that if you have been honest then there is nothing they can catch you doing that you have not already told them you can do. I would absolutely stress the fact that being able to do something one day does not mean that you can do it on back to back days, and that it is very unpredictable, etc (as long as that is true in your case).
    [This Message was Edited on 05/06/2010]
  4. bigmama2

    bigmama2 New Member

    i have always wondered these same type of questions you asked. i havent even applied for dis- and now i cant- long story.

    good luck
  5. shari1677

    shari1677 New Member

    I dont have anything to say about disability as I have not yet attempted to cross that bridge.

    On the other hand, as far as fatigue goes, my doc prescribed me Ritalin. It works great as long as I only take it when needed, otherwise, it causes me severe nausea. Thought it would be worth a try for you.
  6. hollandtx

    hollandtx New Member

    I really appreciate the advice; and the one thing I have consistently done is be honest. I just happened to have an extremely active lifestyle prior to this illness. I ran marathons, did triathlons including an Ironman, played on 2 soccer teams and did multi-sports endurance events with my then-boyfriend...(so much for in sickness and health, ha ha!)

    This is one of the reasons it is so hard to put into perspective--a one mile walk to me is just no big deal when I am up to it, but I know it probably is to those powers that be. I have tried to explain that I walk my dogs, etc., but as stated above it fluctuates. (PERFECT word, btw! : ) I always considered myself to be tough, I played one half of a soccer game with a broken leg, walked 3 miles/day after an abdominal hysterectomy, blah, blah, but this CFS just kicks my rear end. It is quite humbling, and I wish/hope for us all at least some answers and more research. If I hadn't been so active before, I honestly don't think many of my friends and family would believe me.

    As far as Ritalin, thanks for the suggestion. I have tried all of them, including the patch so we could cut the dose down, but all they do is make me feel as if I am speed. (which is basically what they are) I get big time dry mouth, the shakes, nausea and then once it wears off I feel as if I have the worst hang-over ever. (I've only had 3, but they really sucked!)

    When I absolutely have to do something, such as attend my grandmother's funeral, I will take one, but it has to be something on that level. Provigil had the same effect in terms of side effects but strangely did not keep me awake.

    Sp, please keep your wisdom coming. I feel so scared right now; I truly do not know what I will do if I am denied my company benefit and SSD. Hearing from those that do understand makes it a bit easier.
    Thank you all,
  7. AuntTammie

    AuntTammie New Member

    I was very similar to you in how active (and tough) I was before getting sick.....also ran marathons, trained for tri's, worked out two, or occasionally even three times a day, ran on a broken foot, etc, etc, so I do know what you mean......and I brought up much of that on my app - it showed how significantly my activity levels had decreased, as well as why I was still able to do some things (at the time - since then I have become even more disabled)

    .....when I applied, I was most definitely disabled despite being able to do more than I can now, but the before getting sick and after picture helped to show the differences, and I think it also showed that I am not a lazy person, or one who just wants to avoid exercise, or that this was just depression, or anything like that....I was living a very full, very active, busy life and I loved it, and now I cannot be anything remotely close to that