What finally made you decide to file for disability? Anyone.

Discussion in 'Fibromyalgia Main Forum' started by kriket, Sep 22, 2006.

  1. kriket

    kriket New Member

    Was just wondering what finally made those of you on disability decide to make that daring move knowing that it would probably be a great struggle to go through. What triggered you to say Ok, that's it?

  2. Susan07

    Susan07 New Member

    I have been pushing myself to keep working for the last 10 years. I had a desk job so thought I could do that forever!

    Four years ago my FM kept me home for a week and half - odors sent me over the edge and I was in a lot of pain.

    In the past year my arrival at work went from 9am to 11am. I felt exhausted all the time. I was nodding off in the afternoon at work and felt a great deal of stress about driving home - I'd nod off at the red lights!

    The past six months I felt so dizzy I thought I was going to pass out and the back pain was getting excruciating. I also started to use a cane at work which was very hard for me to do.

    In early June I asked my husband to start driving me to work I just couldn't take it anymore. I gave notice a week later I was filing for disability and worked part-time for 2 months making notes and handing off my responsibilities.

    I had this job for 15 years and I can't say I even miss it, even though it was a cush job, because I felt so bad.

    Yes the process is a dubious one and it has taken me a month to get everything together and fill in the applications on line. I hope to make copies of the support paperwork next week and deliver with the "release" forms.

    When I made the decision I called my doctor first and asked if he would support my decision, which he did.

    Good luck!
  3. homesheba

    homesheba New Member

    a compainion for elderly women
    and also cleaning my church
    - all which i really loved...
    but then i started having my 75 year old mother
    having to help me to do simple things
    or getting a little kid!!!
    i decide then that this is too much
    if i am having pain just to empty a desk trash can.
    .. so i filed and it went thru...
    still miss wking tho...
  4. StephieBee

    StephieBee New Member

    Although I am not on disability anymore, I was for about 3 years, between ages 20-23/24.

    I was working at a gym. By this time doctors were giving me mediction to help with the pain, insomnia etc. Well the mix of pain meds and no sleep wasnt helping. I would start to feel tired so they would tell me to go behind the juice bar (which was closed). And sometimes I would fall asleep.

    Other times I would be in so much pain that I would need to sit at a stool at the front desk, and that was against the rules. I would also get in trouble for that. We were suppose to walk potential new clients over to a table that was probably no more than 50 feet from the desk, but when I was in pain I would just ask them to go sit there.

    Finally one day I got a call saying that I was being let go. They claimed it had nothing to do with my conditions. But I know better.

    I did not fight them, and I did not report them because at the time, I was too ill.

    That is why I filed for disablity.

  5. Lolalee

    Lolalee New Member

    Kriket, I was working full-time and feeling worse everyday. I used to keep a pillow and blanket in my car and rest at lunch and breaks. My doctor recommended I take a leave of absence thinking stress might be causing my fatigue and other symptoms. While I was on Short-term disability, I got really ill and was hospitalized. In order to claim Long-Term Disability, the insurance carrier required me to filed for SSD. During this time I got diagnosed with FMS and CFIDS and Essential Thrombocythemia.

    I filed for SSD and was denied the first time. With the assistance of a lawyer I got approved.

  6. charlenef

    charlenef New Member

    the children that i had in my day care had to come to me for everything i could no longer go to them.the parent were very understanding about my problem but i started to feel overwhelmed i knew it was time to stop.i miss my kids soo much they were all my buddies. charlene
  7. Bren2135

    Bren2135 New Member

    This is a very new decision for me. I haven't filed the paperwork yet, because I'm struggling emotionally, and, I'm wondering if I should wait till I know more from my oncologist.

    The decision was a long time coming. I've run out of ways to control my pain at work, and all my health conditions have piled up. DDD and two herniated disks prevent me from getting a desk job. I am simply out of options now.

    This is a great post, thank you! I'll be following along..

  8. TKE

    TKE New Member

    I just filed. Know it'll be a long road to get approved. It was my Huz who brought to my attention that I was so stressed, depressed, etc, that I no longer had a life beyond worring about finances. I used to have a positive attitude & laugh allot, but now everything is just plain negative.

    I, as many are, was in denial. Tried to keep going no matter what. Telling myself I could handle even part time work....NOT! I worked part time doing bookkeeping/reception work. The stress wore me out. Sitting in front of a computer for hours, doing paperwork, answering phones, filing, etc, caused me added pain that increased fatigue. I'd drag home after 6-7 hours & sleep 2-3 so I'd have enough energy to cook supper. My house is a cluttered up mess, as I don't have the energy to clean & put things away.

    I refused to take pain meds or most other meds because I have a stomach problem, so I kept toughing it out. Huz has kept me going with massage for the last few years.

    My back went out again (also have DDD)in August & it threw me for a major loop. It was then I realized it was time to throw in the towel & face up to reality. I've been in physical therapy since August & am at a stand still. PT people think I may have arthritis spur or nerve compression now, as my pain level isn't dropping in lower back & my feet are going numb. Surgery is a last resort, as it may not help me. So I need to go for tests & see what steps to take next. The back going out caused MPS in my shoulders to level 10 pain shooting down my arms. PT is working to get the knots out, but tell me I will have them forever now, as they were really bad. I have a ton of small ones, as well as really big ones. They get them worked down to a tolerable level & by night they're back again. Muscle relaxers aren't helping & massage/heat/etc only gives me a few hours of relief. Steriod shots are totally out, as I cant tolerate steriods.

    It's in our nature to keep fighting & keep going, but each of us has a breaking point & I've reached mine. I may look the pic of health. Am a size 4, well toned, very lttle body fat, look really healthy, etc, but I am not. I suffer with pain daily, fatigue is a major factor, memory problems, mild anxiety, sleep problems, etc.

    Sure I can run the weed whacker, but I suffer afterwards. Sure I can run the cleaner & dust, but I suffer afterwards. Yes I can go to a flea market for a few hours, but I suffer afterwards. It's these times no one other than our spouse/kids sees us. Docs generally don't see us at our worst either. However the SSA lady did when I applied. I hobbled in & sat down. I couldn't even sit for long, had to keep scooching, lean way forward to relieve back pressure, then I finally said Mama I have to stand up for awhile. Stood & then had to sit again. I was in major pain & so fatigued I couldn't even remember my wedding date!!!

    A few years ago I tossed in the towel & had most of my teeth pulled. Fought to hang on to them for 3 years. Had a bone loss problem due to thyroid disease. I had gone to get a root canal done on one & the pain from the novicane shots almost put me into shock. I had to make the dentist stop & I went home. Huz came home to find me at the kitchen table crying. I do not cry easily. I takes allot to make me cry. I told him I just couldn't do it anymore. So I scheduled a consultation & made the decision to get dentures. I was terrified, but took the steps to make sure the docs knew my health issues with Fibro/etc. I had IV dentistry done & never knew a thing. It was the best thing I ever did. I hated giving up perfectly good teeth I had fought my whole life to take good care of, no fillings in most of them, etc, but not having daily pain in my mouth has been a blessing.

    They say FMS isn't progressive. It may or may not be progressive, but I think we try to push past it & when our body is taxed to the limit that's when we suddenly realize we have gotten worse. Did we get worse or were we just fighting against it all this time? I know I was fighting against it. FMS may not progress to the point of death, but our body finally reaches a point it can't take anymore, so we must give in & stop fighting agaist it. Take a break from the stress of trying to work & concentrate on healing & just living day to day.

    At first I felt guilty about applying, but now I don't. After all I earned it!!!! Just because we can function & do things one or two days a week doesn't mean we can do it every day for several hours a day & feel normal or pain free or not pay for it later.

    You'll know when you reach your breaking point. Your body will tell you ENOUGH. Don't feel ashamed... it's your body telling you to take that step so you can move on with life.

    Best wishes,
  9. Mini4Me

    Mini4Me New Member

    when all I could do was lay in bed and cry (for 3 months). I even entertained thoughts of suicide.

    I knew I could never go back to my second grade classroom!
    It was very emotional, and I felt like my life was over,
    but it's actually just begun in so many ways!
    Just Do It!!
  10. Redwillow

    Redwillow New Member

    I quit 2 jobs in a row because I kept hoping I would be able to cope better in a different kind of job.

    I realized that it didn't matter what I was doing. The demands were too much for me.

    I knew it was time because I couldn't drag myself out the door to go to work anymore.

    The pain, IBS, anxiety, lack of sleep was more than I could handle.

    I had reached my breaking point and spent most of the next 3 months either in bed or on the couch.

    It was after this that I finally got a diagnosis of FM and started my application for disability.

    hugs Marion (Redwillow)

  11. MamaDove

    MamaDove New Member

    If you have ever read my profile it goes into dates and details...I know its long and has no paragraphs (yet) but it is detailed...

    After adjusting after every aspect of my life to accomodate my illnesses, home-life and work, the illnesses finally won!

    I tried every therapy, every medication, every which way to do everything and all that was happening was I was feeling worse...

    Finally, I started my own business to pay my share and have my own hours and such only to kill myself grooming dogs...I was told by all of my therapists that I couldn't become a groomer but they also told me I couldn't do more than an hour at a desk job too...So I thought I should live my dream while I could, got thru grooming school and two apprentice jobs and then moved to Maine and built a shop into my home...

    Hubby helped me and part-time work turned out to be too much for me...More pain, more swelling, more fatigue...After 4 years of trying to adjust some more and learning how to 'cope', my health, marriage and children were suffering more...

    After 10 years of tests, therapies,meds and all, I finally got a rheumy to finish what was started and diagnose all my ailments...FMS/CF/OA/DJD/DDD No More Work!!!

    I had applied in 1995, when I was just 28 and as we all know, the system doesn't give a hoot about the person and after all the LIES and denials, I walked away to begin my new life...

    I still tried to work, no matter how little, I still tried...

    Finally in 2004, after that rheumy visit and having a long talk with myself...I said "Self, I think you've lost the battle"...I would rather live in a cardboard box with my husband than go through any further pain, swelling and fatigue...No matter what activity I do, I am worse soon thereafter...So now I can pick what I will do and suffer the consequences...

    I have my hearing this Monday and they are still telling me what to do...BE ON TIME, RESPECT THE JUDGE, EXPLAIN IN DETAILS WHAT IS WRONG WITH ME, TALK LOUD ENOUGH AND WELL ENOUGH SO THEY UNDERSTAND ME, blah, blah, blah...And then they will decide my fate...

    I envy the lucky ones who won their cases on their first attempt...Hitler had nothing on our SSA bureaucracy bull^&#%, they rule with an iron fist...

    Okay, I'm done now...I love where my brain goes without me telling it where to go...Just my cognitive dysfunction alone is reason to approve me...I am downright dangerous!

    My rheumy also told me right off to hire a lawyer because I could not handle the added stress of dealing with the system.

    I have to say tho, that I have done all the work, spent all the money on more docs reports just to go to a hearing...I could have done that on my own...All my lawyer has done for me so far is aggravate me, and meeting with him last week actually caused me to get nervous over this hearing when I couldn't wait to finally go and have the judge 'hear' my case...

    I dunno, for what lil peanuts I am going to get, I would still choose the cardboard box rather than deal with these rotten people...

    Okay, kriket, sorry for the ramble, must be all the 'issues' I have...I have been sick so long and these people just make me sicker...Imagine to have to fight for these people to believe your disabled...It's bad enough to fight these dd's, they just make you worse...

    Peaceful days ahead~Alicia
  12. kriket

    kriket New Member

    about what made you finally make the decison to file for disability. I think I may be getting close. I am working so hard, but I am doing it in so much pain, and then in soooo much more pain after I get finished. I take on too much respnsibility, and feel like I just can't hardly do it much longer. I'm trying to hold on as long as I can!!!! I love my job as a massage therapist, but it requires so much physically. I love to help people through massage therapy, but I think I am caving in.

  13. rosemarie

    rosemarie Member

    The lack of independance. I don't want to have to ask any one for money, or any thing else. I am used to doing things on my own. IF my car needed gas I filled it up and that was ok but now I need to ask my husband as I don't have anything left from the years I worked.

    so I would have to say for my own self esteem and for me. MY independance.

  14. cjcookie

    cjcookie New Member

    I guess that sounds oversimplified but if I could work at all, I would. No one wants to try to live on what social security pays. If you can possibly stay at your job, I would stay as long as you can. If it's not possible, you have to file. If you are lucky enough to have a job with its own disability program, use it.
  15. starofsd

    starofsd New Member

    I applied for SSI because I felt that I could deal with my problems in a year or so and be able to go back to work. The only doctor who supported me was my Rheumi, who has been great. The rest of my doctors have been really uninterested and somewhat rude. I have gone through so many PCP in the last 2 years, just losing my latest last Wednesday when she told me she does not want any patients with Fibromyalgia. I was told my SSI was approved in June, but it went to the Regional Office for review. They are not supposed to have it over 60 days but its been over 90 now and I have no clue what is going on. It's a long, frustrating process for some so I would suggest you talk with your doctor and see how he/she feels and then proceed. Some people luck out and get approved right away, others have to wait several months. Good luck.
  16. NyroFan

    NyroFan New Member


    I left work one day and decided right there on the spot that I would never return and never work again. I knew I could not work. The pain was too terrible and I could not function.

    I knew that was it for me and the workplace.

  17. Summit

    Summit New Member

    Don't you have to be completely unempoyed for so long (months? a year?) or something before you even apply? I don't want to be nosey, but Social Security pays, what, $900 a month or something? Very little to my understanding. How's a person spose to live on that??
  18. barbinindiana

    barbinindiana New Member

    I was sick with CFS for five years before I filed, and had fibro for 20. I had to take an early retirement because of CFS. At first I was getting by ok with the pension I was recieving, but after a few years and still too sick to work, and it was getting very difficult to make ends meet I finally decided I had to file.

    Since stress aways made me crash with cfs symptoms, I kept putting off filing because I didn't think I could take the stress of fighting for disability. I think I would have done it much sooner if I had a husband or someone who could help me get thought it.

    It was only when I really had no choice that I decided to bite the bullet and file. I wish now that I had done it in the beginning. The stress wasn't near has bad as I had been told it would be.

    The worse stress I had after filing was the month from the time that I recieved the letter about my hearing date and the actual hearing. It did cause me to crash big time for about two months, but it was worth it to get the extra money.

    I now feel that I will be able to make it financially. I encourage anyone who is afraid of filing because of feeling they won't be able able to withstand the stress to get busy and file. The stress I had from not having enough money was much worse than the stress from fighting for SSD. it's like any insurance. We've paid into the system for years, and we have a right to the money when we become too ill to work. No one would not file an insurance claim if their house burned down. That would be crazy. It's the same with SSD.


  19. LindaOdum

    LindaOdum New Member

    I was a police officer. I was so exhausted I could hardly hold my head up and the pain was overwhelming. My cognitive abilities were slipping. Still I stayed a year longer than I should have. I applied for a position with the Housing Authority within the police dept. It was 8 hour days, 5 days a week as opposed to 12 hour shifts, 3 on and 3 off. I was still answering calls and running patrol but there was much more opportunity to go to my office and put my head down.

    One night I was backing up another officer and we were in a hands on fight with a subject. I could not hold my own and by the grace of God, back up got to us before anyone was hurt. I took a three month leave of absense thinking if I just rested I would snap back. I had so much sick time and vacation time on the books I never missed a paycheck. That's how much I loved that job. However, at the end of three months I knew I wasn't any better and I resigned with the understanding I could come back when I "recovered". The department called me everytime they had an opening.

    I was in such denial about the whole thing that I didn't even apply for disability for three years. Then had to fight like all get out and finally hire a lawyer before I got it. It was two years after that that I told the department what I'm sure they already knew - I would never be back. That was ten years ago and I still grieve that loss though with acceptance.

    Sometimes things just must be done even when we would rather do it another way. You will know if this is something you have to do. I'm sure most of us would much rather be out in the world and would be if possible. Sometimes it just isn't possible. Linda

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