Need a survey

Discussion in 'Fibromyalgia Main Forum' started by catnip51, Apr 15, 2003.

  1. catnip51

    catnip51 New Member

    Hi everyone, I've been going through a rough time dealing with being on disability this past year and feeling like I could of pushed myself a little more not to have given up my job. My family and friends don't understand how FM could possibly get to the point of not being able to work anymore. If you can briefly tell me how many had good jobs and had to quit because you couldn't push anymore. I worked full time and raised 3 kids and have had fibro for 25 years +. The last three years took a toll on me and I just couldn't do it anymore. The fatigue, the neurological stuff and the pain just finally took a toll on me. It has hurt us financilly but I just couldn't push anymore to help out. I guess I'm kinda feeling guilty, you know that feeling.

    Anyway just a brief description of your job title, how long you had fibro and what made you finally realize you couldn't work anymore. I know alot of you were professional people and had to give up your work because of this DD. My kids not my husband don't quite understand why mom couldn't keep going to help Dad out and I think they kinda of felt I'm dumping on him now to pull my weight. I'd like to show them even though I don't have to prove a thing to my kids that fibro can be that bad to have to force you to quit. I don't like my life right now, I liked being able to get out of this God forsaken house and mingle with the world, I enjoyed my work but work didn't like me. I hate having to sit home and feel this bad as I'm sure many of you do to. What a guilt trip we put on ourselves on so it would help just to see how many of you are going through what I'm feeling right now which is guilt. I'm gonna show my kids when they rattle my butt just how many of us out here don't like being us, and how bad we can feel.

    Thanks everyone hope I get some responses....
  2. kalina

    kalina New Member

    I have had CFS for over five years now, and I've probably had FM much longer than that. I was completely debilitated after CFS first hit me, but after several months I eventually improved to the point where I could do some of the things I used to do. But I never got over the last major flare I went through last fall. I never improved enough for me to do my job even at the low-functioning level where I was before, so I had to give up my career.

    I LOVED my work. My husband and I owned our own design studio and worked from home. But even using every bit of energy I had to try to be creative, I just wasn't cutting it. Add to that the pressure of tight deadlines, and it was impossible for me to continue.

    Now, in addition to running the business single-handedly, my husband has to do the majority of the cooking, cleaning, shopping, etc. I HATE that he has to do all that. I HATE what this DD has done to us, and I feel horribly guilty. I know I shouldn't , but I can't help it. He is very supportive and knows what I've been through, but I don't think many other family members or friends understand that this was not a decision that I made -- it's something that has happened to me.

    People simply don't CHOOSE to become so ill that they have to stop working. And when you are so sick that you are pushing yourself as hard as you possibly can just to keep up at your job, you have to ask yourself if it's really worth it to sacrifice your most precious resource -- your health.

    Kalina
  3. turtis

    turtis New Member

    i had a job working with robotics. i had to be on the phone all of the time, i worked the help desk and when the robotis misbehaved i dialed into the machine via phone lines and manipulated the software or i would describve over the phone where to look on the machine and how to get the hardware fixed . if that did not work someone would fly out to the site and fix it. there are over 2000 sites all over the world. i was fired becuse i missed to many days,(i was given an auwsome reference letter) but i am having problems with conceptual thinking becuse of this DD!!!!! :-(
    I LOVED MY JOB!!!!! now mty wife is scared becuse she is realizing how much this is affecting me!! i graduated from college Magna cum laude 3.8 grade average

    i dont think that i will be able to go back to work EVER and that makes me cry did i say that I LOVED MY JOB!

    tell your loved ones that if they have any respect for you at all that they need to belive you, why would you just up and decide that you are sick with a very debilitating desise
    i have had fibro for many mis-diagnosed years 2 and 1/2 diagnosed, i could not work becuse the stress from the job kept me in excruciating pain

    i wish you all of the luck in the world.
    GOD Bless,

    turtis
    [This Message was Edited on 04/15/2003]
  4. OuchyMama

    OuchyMama New Member

    I was one of those state employees with 15 years seniority oodles of benefits and lucky enough to work with my best friends. I loved my job great pay rewarding spiritually and was working my way up even farther. This DD made me too sick to work, finish college etc. My husband is so stressed over finanaces he looks 5 years older this year since my LTD ran out. The fight for my SSD has been long humiliating and financially devastating. The most disgusting thing for me with this DD is that we are constantly dealing with the prejudice of the DRs the public the Social Security admin. everything that still wants to treat us like whiny housewives who need to lose a few pounds and take a multivitamin. No one would ever try to shame anyone with cancer if they were unable to work. We have many of the same side effects symptoms ect. The exhaustion, nausea unrelenting pain we know are all too real. I am trying to release some of my guilt and shame over feeling "useless". I remind my self daily I did not choose this life. I am the victim of an illness. Allow yourself to not own the responsibility of the repurcussions of this DD God Bless
  5. klutzo

    klutzo New Member

    I was working closing real estate loans for a law firm, as I could not find a job in my usual profession after moving to Florida. I worked 50 hrs. per week, drove a 2 hr. commute and jogged four nights per week, plus staying out very late on weekends.
    What finally did me in, after having what I thought was a bad flu but turned out to be fibro, was both arms and one leg just giving out at work, so I fell on the floor and had to be hospitalized. They thought I had MS. It took about two weeks before I could walk unaided again. Since not working was unthinkable to me, I went back and promptly collapsed again. I had to do it yet one more time before I accepted reality, becoming so exhausted that I could not get up out of the car and had to slide onto the ground and crawl across the lawn to get to the back door of my house after only two days back at work. When I got to the door, I did not have the strength to lift myself up to put the key in the door,and I just lay there and cried. You get the picture.
    My mother dragged herself to work every day in a wheelchair due to polio crippling one of her legs, and she brought me up to believe that people who can't support themselves should be put to death....if she could do it, they should too, and society can't afford those who don't contribute. With that kind of background, I am the LAST person on earth who would stop working, if I still could. The World Health Organization put out a position paper on Fibro, saying it is one of the three highest morbidity illnesses that affect humans. The position paper says the only two that are equal to it in causing dysfunction, are terminal cancer and AIDS, and even those are only as bad as Fibro during the last two months of the person's life. Please believe in Catnip and support her. She is not kidding or making things up. This thing sucks.
    Klutzo
  6. Kathryn

    Kathryn New Member

    I had been a bus operator for just over 15 years when I had to retire last August. I had hoped to keep working another 5 years, but I had gotten to the point where I believed that I was a danger to my passengers and other motorists, not to mention suicidal bicyclists. In addition, I was a drilling Navy Reservist, an Intelligence Specialist. That was the first job that I was forced to give up when the flight surgeon refused to pass me in 1992. FM also cost me my Arabian stallion. I could no longer sit his trot, so I had to find a gentle, gaited saddle horse. I also had to give up racing my MG sports car. My reactions are no longer quick enough. My husband & I have not gone camping in over 5 years. We are hoping that, now that I am retired, we might be able to camp again. It is almost incomprehensible that a non-fatal illness can have such a devastating effect on a person's life.
    Kathryn
  7. leokat

    leokat New Member

    I reckon I've had FMS/CFS since my teens only I didn't realise it. Initially it was the fatigue rather than the pain that prevented me working and achieving even though I was highly motivated.

    I had intended to stay on in senior(high)school but I just couldn't keep up with the work even though I was considered bright enough.

    On leaving school I took a menial job in a cafeteria where I had been working p/t. I could just about manage the work but I was constantly too tired to go out after work or to partake in any form of social activity (no fun when you're only 17).

    Next I got a job in a hospital but I was often too tired to work. I had mooved in with my b/f who I later married and the extra responsibilities took their toll. That job lasted for a year.

    Then I took a number of menial jobs often exhausting my self to the point where I simply could not continue. I started a catering course but could not finish it. My husband died and this only compounded everything.

    I moved to London and just drifted with a bunch of hippies for a while mostly not working. I tried to do a diploma at a local polytechnic but that only lasted two terms. I did a couple of p/t jobs then got a full time job as the manageress of a small hotel. Mainly, I think, because I was living and working in the same environment and also I could delegate this job lasted 18 months. It only ended when the owners of the hotel sold up.

    Reading my diaries from the time all I ever seemed to say was I'm tired oh so tired. Looking back I can see I was sufferiing total physical and mental fatigue. Not amusing when you're only in your early twenties.

    I discovered I was pregnant. The father didn't want to hang around (hardly surprising - I wasn't exactly a whole bundle of laughs). Pregnancy was horrid. I spent the first three months in bed and the last three in and out of hospital.

    I found looking after a young child so exhausting but with no one around I soldiered on. When my daughter started school I even managed to get a p/t job. All the same I am aware that I wasn't always the mother I wanted to be.

    Then things got better for a while. I got a place at university and did a social work course. Had I been more aware I would have realised that the fatigue had returned by the third year of my studies. I took a year off after qualifying too exhausted to contemplate work. Then I started a top up degree.

    This is where my most recent problems started. I managed to get my degree - though I had to defer twice and a one year course took me three years to complete.

    It was during the second year of my social work course that my pain kicked in. By the second year of my degree I could only lay in bed or on the couch every day.

    Silly me as soon as I got just a little better I went and got two p/t jobs cleaning and childminding. This brought me to the point of total collapse.

    Today I can just about cope - most days - with the small life I now have. I don't work and can't - even though I want to so much.

    The saddest thing is that up until five years ago I had no idea that I was sick. I blamed myself for not achieving more. I thought I was lazy, thought I was weak. It is only in the last 18 months or so that I have had a diagnosis. Only now that I am coming to accept that I am sick.

    My daughter tries to understand and is a great support to me. I in turn try not to burden her to much. Apart from that I don't feel that any of my friends or family understand my illness and why I can't work.

    I hope you find the support you need catnip51.
    Leo
  8. leokat

    leokat New Member

    I reckon I've had FMS/CFS since my teens only I didn't realise it. Initially it was the fatigue rather than the pain that prevented me working and achieving even though I was highly motivated.

    I had intended to stay on in senior(high)school but I just couldn't keep up with the work even though I was considered bright enough.

    On leaving school I took a menial job in a cafeteria where I had been working p/t. I could just about manage the work but I was constantly too tired to go out after work or to partake in any form of social activity (no fun when you're only 17).

    Next I got a job in a hospital but I was often too tired to work. I had mooved in with my b/f who I later married and the extra responsibilities took their toll. That job lasted for a year.

    Then I took a number of menial jobs often exhausting my self to the point where I simply could not continue. I started a catering course but could not finish it. My husband died and this only compounded everything.

    I moved to London and just drifted with a bunch of hippies for a while mostly not working. I tried to do a diploma at a local polytechnic but that only lasted two terms. I did a couple of p/t jobs then got a full time job as the manageress of a small hotel. Mainly, I think, because I was living and working in the same environment and also I could delegate this job lasted 18 months. It only ended when the owners of the hotel sold up.

    Reading my diaries from the time all I ever seemed to say was I'm tired oh so tired. Looking back I can see I was sufferiing total physical and mental fatigue. Not amusing when you're only in your early twenties.

    I discovered I was pregnant. The father didn't want to hang around (hardly surprising - I wasn't exactly a whole bundle of laughs). Pregnancy was horrid. I spent the first three months in bed and the last three in and out of hospital.

    I found looking after a young child so exhausting but with no one around I soldiered on. When my daughter started school I even managed to get a p/t job. All the same I am aware that I wasn't always the mother I wanted to be.

    Then things got better for a while. I got a place at university and did a social work course. Had I been more aware I would have realised that the fatigue had returned by the third year of my studies. I took a year off after qualifying too exhausted to contemplate work. Then I started a top up degree.

    This is where my most recent problems started. I managed to get my degree - though I had to defer twice and a one year course took me three years to complete.

    It was during the second year of my social work course that my pain kicked in. By the second year of my degree I could only lay in bed or on the couch every day.

    Silly me as soon as I got just a little better I went and got two p/t jobs cleaning and childminding. This brought me to the point of total collapse.

    Today I can just about cope - most days - with the small life I now have. I don't work and can't - even though I want to so much.

    The saddest thing is that up until five years ago I had no idea that I was sick. I blamed myself for not achieving more. I thought I was lazy, thought I was weak. It is only in the last 18 months or so that I have had a diagnosis. Only now that I am coming to accept that I am sick.

    My daughter tries to understand and is a great support to me. I in turn try not to burden her to much. Apart from that I don't feel that any of my friends or family understand my illness and why I can't work.

    I hope you find the support you need catnip51.
    Leo
  9. catnip51

    catnip51 New Member