How many of you are unable to work? How many of you do?

Discussion in 'Fibromyalgia Main Forum' started by chopindog, Sep 3, 2005.

  1. chopindog

    chopindog New Member

    I am just wondering. I am so sick I can't imagine doing any job, Let alone my profession! (RN). I just wonder if I am not being tough enough? Would really enjoy some replies on the working matter.
  2. tandy

    tandy New Member

    I'm unable to work.
    I did push myself for the first 4 yrs of having DX fibro.
    But reached a point where I just could not work outside the home and care for myself and 3 children~
    2 of which were little at the time.(a baby,..and a 4 yr old)
    When it got to the point when I could'nt even prepare them a sandwhich for dinner,... because I was so exhausted from putting in my 6 to 8 hrs a day job,...I knew I had to leave my job.
    I know alot of us here do continue to work.
    Many of us don't. The degree of this illness varys greatly~
    Hope this helps~

  3. Rose_Red

    Rose_Red New Member

    It's about about being tough enough. If that was the case a bunch of us would still be working.

    It's about having an illness and not killing yourself. It's so hard when you (or me) has to be the paitent. You're used to taking care of others.

    Care about you the way you do for your patients. Try to follow the same advice - as hard as it may be.

    For God's sake, don't beat yourself up because you did not ask for this. Horrible things happen. We just have to find the best ways we can to live with them.

    It kills me to be a single mom on social security. there's so much I wish I could give to my daughter. I would gladly give up my monthly pittance and work my a$$ off again if I was able. I don't know anyone who would choose to live like this if they had the choice. We do what we have to.


    Do something nice for yourself. Take a bubble bath or lay out in a lawn chair and just watch the stars. It's amazing what these little sparks of sunshine can do in your life. Pamper yourself oncce in a while - you're worth it!

  4. fivesue

    fivesue New Member

    I couln't work after a breakdown in 1998. I was off a year, worked a year, off 6 months, on 6 months until in Feb. of 2002 that was the end. I have only had FM dx sinde to top it all get it.

  5. Lurlasgirl

    Lurlasgirl New Member

    and have - ever since being diagnosed in 1987 ...

    And it wasn't so much a matter of being "tough" - as it was necessity... Shortly after diagnosis, my husband I divorced, he was in jail for a time, and I had 3 children to care for.

    I was fortunate, at that time, to have support from my mother and other extended family, and my children (7, 9 and 15) were, thankfully, old enough to be helpful. There were many weeks and months when all I could do is go to work, come home, feed the kids and fall into bed. My youngest still talks of the time when she "thought Mom was dying ..."

    and it was a horrible time.

    But I think in many ways it helped the four of us learn to love and depend on each other, and we are still very close.

    I was also fortunate in that wherever I've worked, I've been able to be candid about my health issues, and the people I've worked for and with have been willing to work with me; even now, when my symptoms are not nearly as severe as they were in those days, my supervisor is willing to let me come in later (because mornings are harder for me)and doesn't quibble if I need an afternoon or morning off to gather myself together. I try not to take advantage.

    Over time, I've learned how to take better care of myself, and learned the things that work - and that don't - for me. But I had to learn how to make it possible to work, because I was the only one to support my children and myself.

  6. lovethesun

    lovethesun New Member

    but I pushed myself to the limit doing a job I love.Caring for children.I went on what little disability they had when it became too dangerous to the children to work there.

    What if I dropped one or forgot something important? anyway,waiting to hear from disability.Linda
  7. UPK5

    UPK5 New Member

    Hi chopindog,

    I am a pre-school teacher. I LOVE what I do. There is some special magic that happens when I am with the children I teach as they experience learning and how exciting school can be. For most of the children I teach, it is their first school experience. I try to plant the seed of loving to learn!

    I used to teach 2 classes a day. A morning and an afternoon class of pre-kindergarten children. When I was diagnosed with FMS, my doctor told me to reduce the STRESS in my life. Well, I thought, how could I ever do that?

    Going to work, keeps me going. I get up and out and don't get down and out. I chose to cut my work day in half. People who I work with, say to me, WOW, you're so lucky you get to work a half day. But the truth is, I only get paid for a half day.

    I get paid in my heart. I am happy I can still work a few hours. I am glad I changed my schedule. I do feel much better.

    If and when you feel up to working, you can always try a little bit at a time first and see how it goes.

    Wishing you the strength you need to keep going, work can come later.
  8. Shannonsparkles

    Shannonsparkles New Member

    I have never worked. I'm 23 now, sick for many years.

    I think I have a tough spirit. Sometimes DD is just stronger than us, than our bodies. It's not our fault.

    I would give anything to be able to help my family and not be a burden on them. I have never gotten to even drive a car.

  9. brit_17759

    brit_17759 New Member

    I used to be a teacher, but had to give it up when the FM and CFS got the better of me.

    I really do miss teaching, and would love to still be able to work.

  10. Jo29

    Jo29 New Member

    I worked for many years. Actually, I quit working because I was not feeling like I was able to work, but had no idea what was wrong with me. I had not worked for at least 10 years before I was diagnosed.

    Now, because I didn't know what was wrong I will never be able to apply for disability. Even though I had both FM and CFS.

    There was no being tough about it. I just couldn't do it no matter how hard I tried. I was a reading tutor in an elementary and absolutely loved it. I still miss it.

  11. chopindog

    chopindog New Member

    I guess that I want to go back to being a nurse so badly because I worked so hard to become one. And I didn't have much time to be one. I graduated at 24 and became to ill to work at 27. I had so much to given and was looking forward to going on to hospice soon.
    It may sound crazy, but I love working with dying people and their familys. I miss it! I also am sad because I have taken the class for being a medical emergencu disaster responder. Anyone who knows me knows that I would at this point be doing all I can to somehow medically help with the hurricane aid.
    I had dreams of going on medical missions to third world countries to help with medical care and teaching. It is hard to come to terms with the fact that I most likely will never be able to do these things. I honestly believed that taking care of others was my calling. Now im lost on where to go from here!
    I guess for right now I need to accept that @ this point taking care of myself is my calling. But it is still hard to accept. Although I am trying.
    Thanks to all of you for you replies so far, they have been helpfull. Bless all of you!
    One positive I think of is that if I do get better, maybe I can use my ever expanding knowledge of the DD to help bring more awareness and help take care of others better!

    Brit, I am so sorry that you have never been able to have a healthy grown up life! At least I had my health for awhile!
    [This Message was Edited on 09/03/2005]
  12. Seeseaisme

    Seeseaisme New Member

    I work and am scheduled for 40 hr weeks, but most of the time I'm lucky if I get in 30 hrs. It seems to get harder all the time.

    I have had to be off work for 2-3 weeks on short term disability through my employer 3 times in the past 8 months. My boss has been really good about this, but I feel like I'm on thin ice.

    It hurts my self-esteem when I let my co-workers down because they depend on me to be there. I work retail. The store only closes one time a year, Christmas day, otherwise it's a 24/7 business.

    I keep trying to be my "normal" self and go on with life, but the reality is that fibromyalgia has changed me and I'm not able to do what I used to. I have also recently been diagnosed with adrenal fatigue.

    I'm trying to accept the "new" me and my limitations and trying to hold on to what I had/have. It's a very tricky place right now.

    I think we all have limitations and we don't know what they are until we have surpassed them and worn ourselves out.

    I would not want to be compared to anyone else. Please don't do that to yourself. We are all individuals and this disease effects each of us differently and yet the same.

    Well, that's my 2 cents worth. I hope you find joy in your day.
  13. SingFMAway

    SingFMAway New Member

    It is also a matter of necessity for me. My husband and I are both musicians. He's a flutist and not really interested in teaching band or something in a school, but someone has to have the job with the health insurance. So I work as a full time admin assistant at a small company.

    Thankfully, they are very understanding of my needs, and no one gives me a hard time for coming in late once in a while, or for leaving for numerous dr appointments! I have found ways to make myself comfortable and give my brain enough to keep me interested. (Admin work was not what I had in mind when I majored in music composition and then got a masters in choral conducting!) They really treat me well, so I can't complain too much.

    I have found doing 10 to 15 minutes of yoga in the middle of the day to be VERY helpful. I got lazy about it last week, and paid for it!

    I hope to be able to keep this dd in line enough that I don't have to stop working or doing music. As much as I want to stay home some days, I know that it's actually good for me to go to work. It takes my mind off of myself and the social interaction is good!

    My mother-in-law was dx with FM in 1997 after being sick for several years. She is a full time music teacher. It's really tough on her, but she loves it so much and is so determined to push through. I can't imagine getting up and going as early as school teachers have to!

    Chopindog, there may yet be a time for you to medically help others. I woudn't give up hope yet. We are still too young. ;)

    Strenght, courage and hope,
    [This Message was Edited on 09/03/2005]
  14. pepper

    pepper New Member

    I taught for 25 yrs and loved it. After becoming ill, I pushed myself to work for 6 months and it made me sicker and sicker. Even though we could not afford for me to stay home, I had no choice. We have had to change our lifestyle drastically and if I hadn't been approved for disability we would have lost our home. Thankfully, I was eventually approved.

    There are vast ranges of disability with these DD's. My dr. uses Dr. David Bell's M.E. Disability Scale to help him describe how disabled his patients are. The disability can range from bedridden to being able to work full time as long as the patient receives sufficient rest.

    I have many days when sitting upright for any length of time is extremely difficult. How could I possibly get myself to work, plan a day (even a shortened one) and deal with students and all their individual needs? I couldn't.

    When my CFS doctor told me that I shouldn't go back to work in September, I fought it. He suggested that I commit myself to working at the soup kitchen 3 days a week and see how I managed. It didn't take me long to realize that I couldn't even get there for the noon meal, let alone stand up and serve the lunch.

    If being tough enough was all that was needed, I would still be working full time and taking post-graduate courses and making a good living. CFS and FM got the better of me.

  15. elsa

    elsa New Member

    Don't be so hard on yourself. We are all very different and these illnesses affect us in different ways.

    I work ... It's a very physical, high energy, keep everyone motivated type profession. The hours can be quite long, but I love what I do. Luckily for me, I can schedule
    my days around my illness. If I know I'll be working a 10 or 11 hour day on a Thursday, then I won't schedule another day until the following Tuesday.

    I promised myself a long time ago that I wasn't going to let CFS/FM take away all of my life ... my passions. I may not be able to work 5-6 days a week anymore, but I still have the profession that I love.... Just scaled down
    to fit my "new life".

    Take care,

  16. abbylee

    abbylee New Member

    I take calls from a call center and I host/moderate a chat room. It took me almost 4 years to find something that I could do from home and while this is not the highest paying job in the world, being able to do it from home has been a Godsend.

    I used to be a systems developer and webmaster for a global company.


    [This Message was Edited on 09/03/2005]
  17. JLH

    JLH New Member

    I am 54 now. I have had fibro and cfs since I was 10 year old--no joke. Doctors just did not know what was my problems--they thought I had MS or most just called it growing pains.

    I worked for 30 years while raising 3 children and a husband.

    I took an early retirement at 48 due to my health problems (I have many, many more health problems in addition to my fibro and cfs--see my bio).

    I was tough working, very very tough. Sometime impossible, but, thank God, I made it to retirement. It definitely was not easy!!

  18. fairydust39

    fairydust39 New Member

    I work part time at a family owned business. Mostly computer work but other things as well. If I'm sick I can miss work --so I make it---somehow!!
    Hugs Shirley
  19. rileyearl

    rileyearl New Member

    Great question! Lots of nurses here--I think taking care of others is what makes it so easy to ignore our own health until it DEMANDS attention with pain.

    I always do everything backwards. I had a really long childhood, then went to college at age 35. At 47 I had a son. The last "real" job I had was so demanding in both hours and stress that I quit over a year ago--after 6 years there. I started an internet retail business from home, which I love doing, but I'm probably working more hours now than before. Also, mostly living on credit until the business gets established. So, a year into the new business, I figured out I had FM and it was confirmed by my doctor. When my son was born, I just resigned myself to the fact that I'll need to work until I'm at least 70--maybe longer. Now I don't know if I'll be able to keep it up or not. I need to spend too many days sleeping and taking pain meds. I support my husband and son, as my husband can't work.

    Sort of a jumbled story, but that's my history. I know I've had symptoms of FM since I was 15, but between honing my type A self and being lucky enough to not have severe chronic pain until age 52 I've been able to work. But, I always wished I hadn't had to work. I'd live near a beach and write novels and take naps.

    My heart breaks for you women in your 20s who are too sick to get out and play or cause trouble or, maybe even work (last choice.) Take care all!

  20. Smiffy

    Smiffy Member

    I haven't been able to work for 16 years; I used to be a special need teacher, now it takes all my energy & determination just to shower.

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