To Work or Not to Work

Discussion in 'Fibromyalgia Main Forum' started by Simoriah, Nov 4, 2002.

  1. Simoriah

    Simoriah New Member

    Working is quickly becoming a major problem for me. I quit a more physical job and took a less strenuous position with another company, however, even with a desk job I am at the point where I do not know how much longer I can continue like this. I am always so tired I just want to cry.

    I come home after work and crash on the couch, dinner now consists of whatever is easiest to make, not what is best for the family, and my main goal in the evenings is to stay awake until 8 pm in order to tuck in my 5 year old.

    The two older ones (10 and 14)are basically putting themselves to bed at this point. When my dh works late, they are on their own.

    I have no time or energy for anything anymore, but what do you do if you need the income? I feel like it's a Catch 22. Either way I am letting my family down, either by not being here for them (always sleeping) or forcing them to give up their activies (dance, theatre, etc)for lack of money.

    For those out there who have made, or ar making this decision, what are your thoughts?
    [This Message was Edited on 11/05/2002]
  2. Simoriah

    Simoriah New Member

    Working is quickly becoming a major problem for me. I quit a more physical job and took a less strenuous position with another company, however, even with a desk job I am at the point where I do not know how much longer I can continue like this. I am always so tired I just want to cry.

    I come home after work and crash on the couch, dinner now consists of whatever is easiest to make, not what is best for the family, and my main goal in the evenings is to stay awake until 8 pm in order to tuck in my 5 year old.

    The two older ones (10 and 14)are basically putting themselves to bed at this point. When my dh works late, they are on their own.

    I have no time or energy for anything anymore, but what do you do if you need the income? I feel like it's a Catch 22. Either way I am letting my family down, either by not being here for them (always sleeping) or forcing them to give up their activies (dance, theatre, etc)for lack of money.

    For those out there who have made, or ar making this decision, what are your thoughts?
    [This Message was Edited on 11/05/2002]
  3. NancyAnn

    NancyAnn New Member

    I have been on Long Term Disability for over a year now. Leaving my job was giving up my feeling of independence and feelings of self-worth. I worked over 20 years in the banking profession and was a bank manager who always had the goal to go to the top. That ended quickly two years ago after a car accident. I thought I would be out of work for a couple of days...that quickly lead to weeks...then months...then a year.... I could not get rid or control of my pain and extreme fatigue. I was one of those workers who was never away from work due to illness. I have gone through the grief of loosing my career, as well as, many friends. It is surprising how many "friends" disappear when you have FM/CFS. If your employer has Short term and long term disability, by all means, apply for it. However, you must have a physician who will treat your pain and verify your illness. It's not an easy path to take..giving up your job. I think the loss of $$$ has been the easiet part of coping for me. I've adjusted my budget to the bare bones. I don't have the energy to do anything that costs money!! I am sure your children would rather have mom at home sharing the good moments she has during the day rather than see her in pain and fatigue at night. I have seen a psychologist during my adjustment to my new life. She helped me decide what I had to do..not what I wanted to do. Researchers have found that many FM patients are type "A" people who try to do it all. I was a type "A" who thrived under stress now it makes me become a ball of quivering jello. I can't do it all anymore. We're all different... If you can, find a psychologist who works with a rheumotologist in the treatment of your FM/CFS. I've found that I am not the only one affected by this dreaded stuff. My entire family has paid a dear price in adapting to how I must live now. Hard, Hard thing to do...especially for kids. Best luck to you!
  4. sybil

    sybil New Member

    i have been off on sick leave for over six months now,but soon my employer will want me to see their medical officer to establish if i'm well enough to return to work.but i'm barely well enough to go outside!! if i had adequate treatment for my FMS,then maybe it would be possible to work,but i don't receive adequate treatment.it looks as if i will be retired on ill health grounds,receive a small works pension and have to go throught the horror of trying to claim state benefits.
    all because my condition remains untreated..it makes me very angry,

    sybilxxx
  5. francene

    francene New Member

    hi simoriah, I don't have the same situation however, I need to continue working to add to the SSD. I've been diagnosed with fm for 11 yrs. for 3 years I couldn't work at all. I had to be on unemployment and I spent all my savings.I went back to work in 1994 and am essentially still employed with the same employer. We have a union in this white collar job and therefore have been protected. I barely made it in a couple times a month. When I did go in to work I would come home so extremely exhausted I could not move. Just like you, I would eat the most convenient thing. It takes 2 or 3 days to get over the exertion. 3 years ago I went on part time employment. Here in california we pay into the system so one can get part time employment for as long as you work. It's designed to help one get on there feet again. It didn't work for me. Finally after three years of part time I applied for SSD permanent disability. six months after I applied for it, it took only six weeks to get permanent disability. I did not have a lawyer. It took me that six months just to get the paper done. I would work on it a couple of days a week. It felt overwhelming. They sent the same paperwork again. I called and reminded them that I had filled out everything, that I ha given them the all the paperwork they asked for plus, I managed to write my story in my own words. I'm very angry that I'm not able to do all the things I've always enjoyed. I take it "one day at a time."

    take care of yourself,

    francene


    [This Message was Edited on 11/05/2002]
  6. Pat UK

    Pat UK New Member

    I was struggling into work then I decided I could not go on any longer, and I am now filing for ill health retirement. I feel that if I had carried on I would have become bedridden. My husband at the same time lost his job so it was a double blow. He now has part time work, we will be hit financially but my health must come first as I was ill all the time and had no quality of life. I feel now that life has been given back to me as I can pace myself and have a reasonable quality of life. It was hard to accept I could go on no longer but there realy was no choice. I am so sorry for you as it is such a difficult decision but I know how you feel I hope you can work things out.
    Pat
  7. fifty1ford

    fifty1ford New Member

    Greetings,

    To work or not to work is a question that is a moot point for some of us. While both my wife (and she is a whole other story) and work, my income provides 75% of our total. It is not even a consideration for me to quit my job. It is at times a tremendous struggle to get out of bed in the mornings, but there is no alternative, unless we were to sell our house and move into some low-income housing unit. That is not an option for me, and something I do not want my teenaged children to go through.

    Having a job and going to work is a good way to keep going and get your mind off of your health woes. I would also the miss the connection with my friends at work which is a source of substantial support. If you can possibly manage, you should continue to work although I realize how tough it is to do so, not having a job only servers to isolate us even more than we are.

    Peace,
    fifty1ford
  8. Pinky

    Pinky New Member

    Funny- I was just going to ask that same question. I am currently working part-time and barely making it though the day. But if I were to quit and stay at home I think it would make me even more depressed than I am right now. At least with working I am getting out for a few hours a day amongst the living and not sitting at home by myself in pity. My job is very stressful(a 3-4 year old preschool teacher) so I am seriously considering finding a new job with less activity and stress.For me, it is no option, I need to work for financial reasons as well as for my sanity.
    Debbie
  9. roro

    roro New Member

    I HAVE to continue working or face poverty. I am the bread winner, and I have a son who is 13 who depends on me. he woudl rather pick up the slack and do extra chores than live in poverty. I am glad he is mature enough to realize this and make a responsible decision. There are some days when i am in a flare when all I can do is work and sleep. I have no other life. But for me its worth it to be able to keep my house.
    You have to decide how badly you need the money and if its worth it for you. Its a personal decision only you can make.
  10. teach6

    teach6 New Member

    My body just about shut down on me. I took a day off for a doctor's appointment and then decided I might feel better if I stayed home for the rest of the week (2 more days). Over six months later I tried returning part-time with modified duties. Even that was too much.

    I'm single and it hasn't all been easy, but I know I will make it, one way or another. I'm lucky to have LTD, which I'm on now and have applied for disability retirement and SSDI. Sure, it means changes in my life, but my health really didn't give me any options.

    Barbara
  11. GoDaleJr

    GoDaleJr New Member

    for months now. Sometimes I don't feel bad off enough to be doing nothing. Sometimes I am in so much pain, I'm glad I don't have to go to work. Sometimes I am just so darn bored I go crazy. Sometimes I wish I still had my job and hadn't gotten so sick. Sometimes I wish I could work because that would fill a void in my life. Sometimes I just want to give up.
    I've been on State Disability for 8 months now. It will run out in a few months. I'm applying for SSDI and or SSI whichever I can get. I am young, only 35, and so my social security amount is not that much. Certainly not enough to continue to live where I am living now. I had a great job once, made lots of money, even more than I had expected to earn, and of course with that money my lifestyle changed. I didn't ever worry about money.
    Now, it is completely different. The money I get from State Disability is the maximum amount one can get, but it is still close to poverty. I am single, live with a roommate who is moving out. I have been on his medical insurance and now that will stop when he moves out. I won't have medical coverage anymore. That scares me the most.
    I'll have to find a new place to live..probably in the scummiest poor area or move out of state and somehow get my horse to go along with me.
    I don't want to live like that. I want to be well. I want to get a job and be self-sufficient. I don't want to have to worry that I have no money to pay rent or bills. It doesn't matter that I am exhausted all day and feel ill. At least I know that I cannot get much worse physically. I rely on my medication heavily now. But feeling like I'm needed somewhere (job) and taking care of myself, is more important to me.
    Good luck to you.
    ~Gina