work and CFS

Discussion in 'Fibromyalgia Main Forum' started by cherylsue, Mar 27, 2007.

  1. cherylsue

    cherylsue Member

    After almost 9 months of struggling with this CFS, I've made some progress and was getting bored at home. I decided to push the gun and return to work parttime around the first week in April.

    However, I still haven't found a consistency in my days. Some days I can do more. Other days, I just want to sleep.

    Since I am on temporary disability presently, as soon as I go back to work it stops. If I can't make the scene after a week or two, I have to reapply for disability - all the doctors forms, work forms, etc.

    I am having serious misgivings about returning next week. I would just have to work 2 1/2 months before the summer break.

    To cancel my return would be embarrassing, but to collapse and quit would be also. I have a substitute who is excited about my return. I don't know what to do.

    My mind wants to go. There's nothing wrong with my brain (no fog.) However, it's my body and poor stamina that is failing me.

    I see my doctor Thursday. That will be D-Day for me. (Decision Day)

    What would you do in my place?

    Thanks for your input.

    CherylSue
  2. SweetT

    SweetT New Member

    Like instead of 25-20 hours, do 16-20 if you can.

    I truly wish that I could afford a break. My organization just got short-term disability but no one with a preexisting condition is eligible to use it for a year.
  3. upnorth

    upnorth New Member

    I know it's been a long time, I only very very occationally come to the board anymore. I went back to school (Masters of Education) a year ago in January part time and have been managing about 3-6hours a week out of the house for classes and I do my reading and writing from home. The nice thing is although it give me a little activity, no one relys on me if I need a sick day/s

    I'm in the same boat - considering maybe a part-time job of some sort this summer. I still have low stamina (around 50-60 average) but I have enough that I'm getting a little bored. I don't get much brain fog -it's the physical stamina - weakeness (and flu-like symptoms)that disables me. I remembered we had this in common.

    I wish there was a good answer to this dillema of yours. I too am on disability, however I'm allowed to work part time - the money I make will just be minused from my check after the first 100 - which I get to keep.

    On the one hand, waiting til the fall and building up as much reserve as possible might be wise. However, if you relapse between now and then you might regret not trying. The worst that can happen is you relapse and have to reapply for disability and build back up. The way I'm looking at this summer is the worst that can happen if I try to work is that I relapse (which happens sometimes anyways). At least if I try I'll know.

    Good luck in making your desision.
    Take care,
    upnorth
  4. cherylsue

    cherylsue Member

    Thank you for all your support and encouragement. It gives me something to contemplate. I'm really rather scared.


    Hi Upnorth:
    I'm glad to hear you are hanging in there and going to school. That's always interesing.

    Yes, I know the lack of stamina is frustrating. It's what scares me the most. With each relapse I lose a little bit more.

    Are you still seeing your same CFS doc? Is there anything she can add to your treatment?

    I've been trying the Nexavir transdermal gel. It's helping somewhat.

    Best of luck to all of you.

    CherylSue

  5. GoldensRule

    GoldensRule New Member

    Hi Cherylsue,

    I am going back to work on April 1, after being off for six months. Unfortunately, I do not have a choice. I originally went back in January, part-time (20 hours) but could not handle it. Luckily, I kept copies of all my original paperwork and my doctor just copied and put the new date on it. My employer told me that since my physician never stated that I could come back to work full-time it would not be a problem to go back on sick-bank. Unfortunately, you can only utilize this for six months.

    My days are never consistant either. I could feel pretty good one day and not be able to get out of bed the next. Right now I am having trouble with sleep which is one of the most important factors for fibromyalgia. I am very concerned about going back since I have no sick-time or vacation.

    This is just my opinion but if you have the option of staying off of work longer I would do it. If you are bored staying at home, you could try doing a hobby on the days when you feel good. If you do decide to go back to work, I would start out with very low hours because 20 hours is a lot to handle when you do not feel well.

    I don't know where you live, but the weather in Michigan is starting to get nicer which makes it easier to walk outside. I have kept in touch with all of my co-workers and we have gone out on the days when I have felt up to it or they have came over to visit me.

    I wish you all the best!
  6. 545

    545 New Member

    Does anyone know - is there a consistent party-line on whether you should return to work? Sometimes I'm so baffled by advice I'm given - on the one hand, it seems like any return to society would be good, but at the same time, I've never heard anyone say whether that can lead to potential relapses, and the results of brain fog are always the most humiliating while at work.

    Not to discourage you, cheryl - best of luck; perhaps one thing you could do before returning would be to imagine the different specific situations in your specific occupation in which your stamina would be most likely to get to you and think about the best way to handle it. & I'd be really curious about what your doctor will say - be sure to tell him what's on your mind, but I wonder if he'd have a good different perspective on it. Next month I'm meeting a specialist in fatigue who is also a general internist, and I've decided to put off the job-search until I see what he has to say.

    Another option - I'm not sure if this could apply to your line of work Cheryl - is to work from home maybe online; I'd seen that lichu did this for a while, and for a few months last summer I was editing a book at home, collaborating with the author online. Didn't pay too well, but it gave me something to do & it was nice because it was on my schedule & I could lie down. Depending on the nature of your work, maybe you could request to do it from home, or I wonder if anyone else here has come across similar opportunities. Also, maybe this sounds kind of silly but it just struck me - we could try volunteer work to begin weave back in to routine or to test the waters so to speak; it'd be great to be able to volunteer for online work. Ultimatly, cheryl, if your return doesn't work out, perhaps you could try volunteer work.
    [This Message was Edited on 03/27/2007]
  7. cherylsue

    cherylsue Member

    Godensrule: I lived in Michigan when I was going to school, and I loved it there. Now married, my family and I have vacationed there, as well. I have lived in polluted Chicagoland most of my life. My family and friends are here, so this is home.

    I can relate to the good days/bad days. I'm having a bad day, today, or at least this morning. Sometimes it picks up in the afternoon.

    Cat: I will be retuning and working 20 hours a week. It's about an 11 mile round trip for me. Yes, I'm afraid of relapse. I'm functioning at 50%. I was hoping the Nexavir transdermal gel would give me more of a kick. It has helped, but enough?

    545: Do you just have CFS or fibro? I'm not suffering from brain fog now nor do I have pain. I just get malaise and fatigue like your are suffering from the flu. It lifts somewhat and I can do things.

    Thanks for your replies. I'm still thinking.

    CherylSue
    [This Message was Edited on 03/27/2007]
    [This Message was Edited on 03/27/2007]
  8. upnorth

    upnorth New Member

    Cherylsue,

    Yes I'm still with the same specialist. I've seen so many doctors and been down so many 'alternative' paths since being ill that I'm now pretty much done chasing cures/treatments.

    My specialist treats plenty of CFS sufferes with some success. She's also known me longer than any doctor and I'm tired of trying to re-explain this illness to doctors who don't have much understanding.

    The last 3 months I've been trying an anti-viral which seems to have helped me a little - nothing significant. Overall, I know I've improved over time (some symptoms have disappeared), it's just the amount of improvement in my stamina is disappointing.

    Hope things work out for you. Good luck making your decision.
    All the best,
    upnorth
  9. 545

    545 New Member

    Cheryl - I have CFS, or at least unexplained fatigue for now. I can really relate to your up & down days - and, on top of (my) fog - it really hinders my ability to make any decisions about the future. Last night I went to bed feeling great, healthy, "recovered", etc., but I woke up this morning pretty out of it; but I was kind of expecting that, because it's pretty usual.

    Dr. Bell talks about these sorts of swings (for more detailed info, see my post under the thread "Have you felt NORMAL....like your old self") - they really add to the ambivilance of the symptoms, because, if I'm not feeling too too horrible & at the same time a doctor tells me "your fine, do whatever feel right" - I'll listen to him and I'll find myself flat on my face within a week. This really has happened so often that I'm afraid to ask for advice anymore, but then I find myself with a dearth of advice, until I come to this forum :)

    It makes the truth seem so subjective - like the answer to 2 + 2 is "it depends on how out of it I am when you ask me"; I'm not even sure how you would begin approach more important quesitons like should I get a job.
  10. cherylsue

    cherylsue Member

    I had read your post before and downloaded Dr. Bell's book. Thanks for bringing it up again.

    Today I have the malaise and fatigue. But I had been feeling better, but as soon as I try living normally even for a few hours, I seem to crash the next day or so - postexertional malaise.

    I think I have some important decisions ahead of me.

    Thanks,

    CherylSue
    [This Message was Edited on 03/27/2007]
  11. roge

    roge Member

    CherylSue,

    I personally would not do it, but of course only you know best. Have you considered volunteering at the school or elsewhere (school would like as then they dont pay you) and good for you as then get out of the house and you would still get your LTD (I am assuming you have this) and then not have to run risk of applying all over again. I am assuming the money factor isn't driving your decision here but rather as you miss work activity and want out of the house and I as well as any here can relate. Maybe volunteer for next 2 mths and then will get a better idea for next year and if you can't volunteer at the school, then maybe somewhere else. Or is you are feeling a bit pressured to return to your actual teaching job for if you dont soon , you will be let go as the school can only hold your job for so long, ie. " own occupation" LTD.

    Peace
  12. cherylsue

    cherylsue Member

    I have short term disability. I feel so awful today, that I think this is a warning to me that I may be returning prematurely. I've had two previous episodes of CFS - 2000 & 2004 where I took off chunks of time. I had so much sick time built up that I used that. I ran out, so I applied for short term disability.

    My scalp and lips are tingling. I feel that the viruses are doing a little dance in my head.

    I feel like crying. I was so psyched up to go back to work. My head wants to, but my body doesn't want to cooperate.

    Thanks for the advice.

    CherylSue
  13. Tevye

    Tevye New Member

    Unfortunately I am a Type A+. Working long, stressful hours for 25 years and ignoring (or fighting) the warning signs really contributed to my FMS. I think the issue of returning to work is very individual and takes a lot of consideration about your temperment, the job description and the match with your health care needs. By the way, I was formerly a director for job retraining programs. For me, returning to work is not a good option because I have trouble pacing myself.
  14. cherylsue

    cherylsue Member

    You have an adorable grandson - love the expression and the hair. (I looked up your profile)


    You brought up some interesting points and I'm looking inward to see why I want to return to works so badly.

    1
    Money, of course
    2
    Identity - it's part of who I am
    3
    I love working with the kids, it satisfies a need in me to nuture
    4
    Escape from the demands of an aging parent
    5
    Forgetting my problems by helping someone else

    However, I don't want CFS to be a permanent fixture. I've had 3 major episodes including onset in the past 7 years. I've been able to achieve remission before. My first remission was 3 years, my second only 11 mos. Obviously, I don't have the lifestyle nor stamina to keep it quite at bay anymore.

    I need to think.

    Hugs,


    CherylSue
  15. sugarpeach

    sugarpeach New Member

    I only say this because I am in a terrible flare since Jan. and i am a teacher for kindergarten and reading recovery and I am barely surviving my days. It is so hard to be in so much pain and have this terrible fatigue now on top of it. I have just turned in my FMLA papers and Have decided that i am going to take Thursdays off b/c this seems to be my worst day. I think it is b/c all i do on the weekend is sit in a chair and read or watch TVand this seems to give me some get up and go for the beginning of the week.. I still do the household things and chauffer my 3 kids but nothing else. If you can figure out a way to stay out til the summer do it. Just think that maybe you will extend your remission for a longer time if you get more time to work on your health now. Maybe you could pick up some tutoring on the weekends and even through the summer. I do this every other Sat. and even have had to cancel on a couple of those days. I hope to do this for several 1st graders this summer. Every little bit helps especially when you have to pay for supplements,copays and such. I hope this helps you with your decision especially in regards to down the road. Peace-Susan
  16. sugarpeach

    sugarpeach New Member

    I only say this because I am in a terrible flare since Jan. and i am a teacher for kindergarten and reading recovery and I am barely surviving my days. It is so hard to be in so much pain and have this terrible fatigue now on top of it. I have just turned in my FMLA papers and Have decided that i am going to take Thursdays off b/c this seems to be my worst day. I think it is b/c all i do on the weekend is sit in a chair and read or watch TVand this seems to give me some get up and go for the beginning of the week.. I still do the household things and chauffer my 3 kids but nothing else. If you can figure out a way to stay out til the summer do it. Just think that maybe you will extend your remission for a longer time if you get more time to work on your health now. Maybe you could pick up some tutoring on the weekends and even through the summer. I do this every other Sat. and even have had to cancel on a couple of those days. I hope to do this for several 1st graders this summer. Every little bit helps especially when you have to pay for supplements,copays and such. I hope this helps you with your decision especially in regards to down the road. Peace-Susan
  17. cherylsue

    cherylsue Member

    I had a terrible malaise/fatigue day yesterday. I see my local PCP doctor tomorrow. Considering my remitting/relapsing history, the reduced stamina with each CFS episode, and the likelihood of it reoccurring, I think I need to postpone my return. Even if I return to work one day and decide I can't do it, I have to go through the disabiltiy process again - 2 doctors notices and a district form. My family has expressed their alarm and concern that I wanted to return. They felt I should wait until the next school term.

    I miss work so badly. I did visit my principal and friends last week at school. I came back and rested that afternoon and the next day. That is a warning signal that although mentally prepared, I am not physically prepared.

    I am very sad today. It's taken the wind out of my sails. I want to reclaim my life so badly. My husband told me he doesn't want to see me relapse so I can't go back in the fall. He's telling me to relax and not add the burden of working. We're making it financially on the disability check, so there's no financial burden to return. Just my emotional and mental state wants me to go back to work. I miss it so.

    Thanks, Sugarpeach, for the advice. I saw on another post you were having problems with getting disability. My heart goes out to you. I wish you well. It makes my sadness feel self indulgent.

    CherylSue
  18. sugarpeach

    sugarpeach New Member

    I am so glad that you have decided to stay home and try and regain your health so that you will be all right in your school's next term. Please do not ever think that you are self indulgent!! This life that we are forced to live takes many things away from us but I like to think(from all the people I have read about on this site) that our suffering makes us kinder, more caring and able to believe when someone is in a bad way and offer our support not skeptisism(sp). You take care and get well and continue to research about this DD and share anything new and interesting that may help us have more good days. That can be your job for now. Hugs to you. PEACE-Susan
  19. cherylsue

    cherylsue Member

    Thank you so much for your encouraging words. I'm only operating at 50%, and my CFS has not yet stabilized, so I think resting is more of what I should be doing at this point.

    It's comforting to know that I have the support of online friends like you who understand each other and what we are going through.

    Best to you, as well.

    Hugs,
    CherylSue
  20. Jordane

    Jordane New Member

    CherylSue,

    I think that is a wise decision hun.The money part would be nice I know but as my hubby keeps telling me.

    Money isnt worth hurting your health!!! He was right.

    I have been off almost a yr now.And even on one of my better days I know I could not hold down a job,even partime!

    Support & Understand!!!
    Jordane