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I'm scared! I need to stop working and go on disability but having a hard time accepting it.

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Posted 4/5/2012 4:27 AM (GMT 0)

Hi,

I thought I'd be fine when I got to this point. I knew I would eventually be unable to continue working due to my fibro and i thought I'd just be glad to get some rest. BUT, now the time is here and I'm having a hard time 'pulling the trigger' so to speak.

I work full-time in a fast-paced job with an extremely demanding boss.  My health has been declining for several months with one flare after the other. So many flares that now the good days are mere hours rather than days and they are few and far between. I'm so exhausted and in pain most of the time that I can't even think straight.  My doc says I need to recuperate and I should start on short-term disability (about 4 months). (I have insurance via my employer) I may need to be on long-term disability depending on how I am after a rest.

I'm scared to leave my job. I get paid fairly well and I like the actual work (even though boss is a jerk) but I know that my health is getting worse and worse. I'm scared that I'll go on short-term disability and then have a problem getting on long-term and maybe risk not having an income altogether! (keeps running through my head)

This is the busiest time of the year at my work and the busiest time for my job. I feel guilty for thinking of leaving. 

Have you been through this? I know I should think of my health first but having a hard time going forward because this is such a huge step/change in my life. Your advice is much appreciated!

Posted 4/5/2012 4:45 AM (GMT 0)
Hi Booklvr,

I'm sorry you've been having so many flares. I am currently on disability and there is some talk of it being made permanent. It horrifies me to think of it so I can relate to some extent. Since you seem to enjoy your work I wonder if maybe you can take some vacation time instead of disability? See how you feel during that time and then it may help you make your decision a little easier. Try to keep as calm as possibile too. I know such decisions bring with them a lot of stress and that makes things way worse, you've got people here to talk to and it seems a good dr, as well as some options. Take it one day at a time and don't assume the worst will happen no matter what. Keeping positive may help you see more clearly. Often when I make hard choices I will make a list of all the positives and the negatives, that might help too.

Best of luck to you, TiredArtist

Posted 4/5/2012 5:11 AM (GMT 0)
Hi TiredArtist,
Thanks for writing. I am on medical leave for a week right now. It's a short break to give me time to rest a bit and hopefully think more clearly about what to do next. So far I don't physically feel any better but it is easier to deal with since I don't have to go anywhere. I can lay down when I need to.

You are right about staying positive. I know it's important and remind myself of that. This is such a surreal experience. I keep thinking: "Maybe I can just push through it and keep working." or "Maybe I could just wait a few more months and then start disability."

Truth is, I struggle each day that I'm at work. I can no longer physically manage anything more than just work and that's it. So, when I get home from work I just lay on the sofa and rest. I can't cook, clean or socialize with friends at all. My hubby is great and does all the cooking. (thank goodness!) On the weekends I just rest, sleeping on and off in order to recover from the week and do it all over again come Monday.

Just writing this out is helping me. It is clear what I should do; it's just a scary change so harder to do than I thought. It really helps to hear from others, like yourself. Thanks for the support.
Posted 4/5/2012 5:24 AM (GMT 0)
Health comes first hon, however, I think I have a compromise. Have your doctor write a note out saying you can do only X ammount of hours, x lifting, x everything you do in your job. Give it to your boss and say "due to my health, I am unfortunally having to ask for reasonable accomendations to my employment". Be sure the doctor also says whether its pernament, dated, and the problem (fibro) (if your comfortable with it)

Per the American Disabiliities Act, we, the disabled (including many deases and even diabetes) have been protected by law. It states places of employment must give us help in what we need. Like if we need not to lift 50 pounds, we don't. So on.
Posted 4/6/2012 12:31 AM (GMT 0)
I must say I stayed on my job waaaay to long.  I needed the insurance.  I hated the job, and was on track to be terminated.  It was wrecking what was left of my health. But I still stayed.

Till one morning an incident at work broke the last straw.  That was it, I'm outta here, I'm gonna retire.  As I drove home from my former workplace, I felt as if a huge weight had been lifted off me.

Yes, I had all the same concerns, money, insurance, and what the heck is wrong with me?

But I still felt better, better than I had in ages.  I guess it was a mental sort of thing. I still hurt, slept a whole lot. It took a few months to sort it all out, I tried dieing that summer, couldn't even do that right. Multiple blood clots in legs and lungs.

So now, I don't do anything I don't want to do.  I never make plans, if I want to do it, I do.  I'm better mentally, physically, well, no.  It is an attitude adjustment of sorts.  I like being home with Spookie, we go together. You can find things to do on your own time frame.  Things may not get done, I do a window a month.  So what?

Good luck!

Posted 4/6/2012 5:39 AM (GMT 0)
I have been off work for almost 3 years now. I started off with short term disability and then long term disability. It took over a year to get feeling like I was alive and could function on my own. I almost died because I would not stop because I was caring the medical insurance and making a good income. I finally threw in the rags and filed for disability. It took 9 months to get it. Then I had to wait for my medicare to kick in. I cried and I was scared because I didn't know how we would live. God showed me how to trust Him and have faith. It still amazes me how much I have and I never lost anything, but just gained more then I would ever need. This is my 3 rd year and I am still getting long term insurance. I am not sure when they will decide to take that away.It takes a lot of paper work to keep them happy. You can be disabled from the state, but it doesn't mean they have to pay you for long term disability. If you have another income in your family and your not the carrier of your insurance, maybe you can feel comfortable taking off for a few years. I have good and bad days now. Sometimes I feel like I might go volunteer some where, but as soon as I think I can my fibro shows its face. It frustrates me so much. So far I have not got to lonely or bored. I can understand how you must be scared to take that leap. I dont think I would of done it, if I hadn't got on my death bed.
Posted 4/6/2012 11:20 PM (GMT 0)
I'm encouraged by your responses. I will apply for disability in the next few weeks. I know it's the best thing for me so I can start to recuperate. I've been off work for a week now and feel just slightly better but it's because I have hardly moved in the last few days. I've been sleeping and staying at home.

Thank you for the replies to this post. You support is very helpful and sharing your personal experiences help me feel stronger and not alone.

Hugs!
Posted 4/8/2012 5:59 AM (GMT 0)
It's nice to have the choice for disability. I didn't have much of a choice. I loved my job and was climbing up the pathetic ladder when I was injured at work. Suddenly I'm having surgeries and fighting my former employer, who fired me because I no longer could do my job! I just won my workers comp case, but they are appealing it. Meanwhile I have no income...SSD denied me. I had to hire an attorney for my workers comp case and another one to fight for SSD.

I didn't want this, but because of the reckless actions of a co-worker I have lost my job/career and income! Now my wife supports us both and pays my bills by working a lot of overtime. I never see my wife anymore and I'm home alone, depressed and in CP!

It's very difficult for me to consider and say that I am disabled, but I am. I am also unemployable...my doctors have too many restrictions, so I can't even sit at a desk answering phones. I've worked the majority of my life and paid into SS and now I need it, but they make me fight for it. I was told by my attorney that it could be a long time before I get any SSD benefits, because able-people who's unemployment benefits have expired are applying for SSD, saying they are too depressed to function! That's also why it's taking me 3 freakin months to see a Psychiatrist for my very real depression! I understand they are desperate for money to feed their families, but they are stealing benefits from those of us who are really disabled and need those benefits. I can't get unemployment because I can't work. You need to be searching for work while receiving unemployment, but since I'm disabled I can't do it. I don't condone lying, stealing, cheating and fraud. I don't want this, but I need it. I never asked for it, but I got it.

Booklvr and everyone else...I sure hope you get your benefits and can find some measure of comfort and no stress. Best of luck!

Cheers!
Posted 4/10/2012 10:54 PM (GMT 0)
I am a Canadian woman living on a CPP Disability...living with FM and a multitude of other ailments. I have been out of the workforce for the past three years...these past three years has been an emotional roller coaster of re-defining my "old" self and trying to figure out who this new person is...it's the same me, just in a new 'temple' one that is still under construction.

Isolation, I guess is the worst part of leaving work, your social activities, etc, but in the long run your body overcomes the chronic pain and depression that eventually rears its ugly head. Take care of you. Eliminate stress. And know what there are lots of us who are out there who are sitting at our keyboards reaching out the same way you are.

Just remember, all the money in the world won't take away how your feeling.

One other note, I took my insurance company, Great West Life to civil court after that decided that they didn't wan to pay me any longer...very stressful journey, especially at a time when I was very sick, but so glad I stuck it out..in the end I own my battle with Great West Life, I stood up to them...the outcome, to never let fear stand in your way.

Hang in there....x
Posted 4/11/2012 1:48 PM (GMT 0)
Hello to All,
I'm new here and not sure how this works. I worked with severe pain for over 30 years until I retired at age 50. I thought I could maybe get a part time job which I did but it was very physical and left me in more pain than ever. I with much anxiety applied for disability almost 2 years ago and am now waiting for a hearing. I'm 57 years old and going through all of my saved retirement money. I'm so scared I'll run out. I was diagnosed with Fibro Jan of 2011. I had 15 surgeries before they finally figured out the pain was not orthopaedic. I'm so frustrated right now and I'm sorry I'm rambling but it's hard to find people to understand. My friends and family try but because for years I kept it to myself making excuses. They really don't get it. Has anyone else been through this? I was on lyrica & neurontin for years but it made me so foggy all the time I was the butt of every joke about forgetfulness. I now am taking percocet 2-3 per day and clonazapam. It takes the edge off but now they want me to change medications again. Why? This seems to work better than anything else I've tried and it keeps me human. Yesterday my Rhuematologist prescribed Viibryd and tramadol to use instead. When I looked up the drug interactions of the two it was severe. All I feel like is a guinee pig. Thanks for listening and I do understand what all of you are going through. I still do believe Life Is Good!
Posted 5/15/2012 3:29 PM (GMT 0)
Your doctor says you need to rest.
Your doctor says you need to rest.
Your doctor says you need to rest.
Your doctor says you need to rest.

Did I mention that your doctor says you need to rest? Is your doctor a good doctor? Do you trust your doctor? Then do what your doctor advises.

Take care of yourself, there will be other jobs later if this one isn't there when you feel better, it's not going to be the end of the world.

:)
Posted 5/21/2012 5:16 PM (GMT 0)
I'm going through this now. The financial stress has gotten to me when being off work is supposed to alleviate my stress.

We need to sell our house now because I can't worry every month. I LOVED my job, my boss, my co-workers, the actual work, but there was no way I could continue.

I barely have the energy to file all of the paperwork. Trying to get my house ready to put on the market is taking me forever because I can do something for an hour before Im zapped of energy and/or my pain that day prevents me from doing much.

I am trying to find something to look forward to - like getting a small ranch condo so I don't have to worry about stairs. I love my house, but I guess it's only a house right? We've almost depleted our savings since I had so many medical bills last year. In the long run I know it will be better.


I must say that since being off work being able to rest when I need to has been so incredibly wonderful. No more tears in the morning before I had to leave the house.

Let's all stay in touch about this subject.
Jacey
Posted 5/22/2012 7:41 PM (GMT 0)
Hi everyone!

I too was in the same boat..loved my job, my boss, my fellow co-workers but my body would not allow me to continue on. I also had a high income and have recently been awarded ss disability. It is such a huge hard pill to swallow that we aren't the same people we use to be. But I am learning through God and the wonderful people He has placed in my life that this is not the end. My last day of work was in June 2010, and it was just recently I realized I can talk about my job without crying like a baby. You will grieve, and that is so natural...let it happen..

You will overcome, I too want to volunteer and find myself not doing so because more times than not I couldn't perform the task they needed..No matter how small. I am just so afrain that I will say, yes, I'll be there and then that day..I can't get out of the bed..

I agree if your doctor says rest, get in your bed or couch and RESt!  Trust me if you don't your body will put you there one way or another...allow yourself to rest..I hope that things work out for you and know that it's ok to grieve and it's ok to let go of what you can't do anymore..

Sending gentle hugs and prayers..

FibroNana/Jerrie

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