Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Can You Work?

Discussion in 'General ME/CFS Discussion' started by OkRadLakPok, Jul 4, 2016.

?

Can You Work?

  1. yes

    7.8%
  2. no

    71.1%
  3. part time

    12.2%
  4. can work in stretches and then must stop

    8.9%
  1. OkRadLakPok

    OkRadLakPok Senior Member

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    I am just wondering who is able to work and how?
    I am not able to do so which is very hard. I can't support myself and health care when you don't work can be difficult.
    The things that keep me out of work are so many I can't list them. But for those who DO work, how do you do it?
     
    MEMum, merylg, MeSci and 1 other person like this.
  2. Groggy Doggy

    Groggy Doggy Who let the dogs out?!! Woof! Woof!

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    Without an income managing finances is very stressful, and purchasing a good health insurance policy is expensive. Hats off to the folks that are still able work.
     
    MEMum, alkt, merylg and 1 other person like this.
  3. belize44

    belize44 Senior Member

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    Pennsylvania
    I crashed and burned in 2000, and have not been able to work since. I went from a full time job in health care to sales in a store, to outside sales as an independent contractor, to disability. I still feel wistful longings to be employed, especially when finances are so tight and my husband comes home looking tired.
     
  4. frog_in_the_fog

    frog_in_the_fog Test Subject

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    California
    In parts of California, you can get pretty good coverage that is free for people in low to no income situations. I am amazed at how good the coverage is, also I have not had to pay for any prescription. When I get really ill, I can hardly do anything productive for weeks. Low impact activities or work that can be done in bed, are the orders of the day for me lately. I haven't been able to work 9-5 for over ten years, but I still have managed to get by somehow.
     
    MEMum, alkt and merylg like this.
  5. Artorias

    Artorias

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    UK
    Unfortunately work is out of the question for me, and has been in the 9 years since I was diagnosed.
     
    Gingergrrl, MEMum, alkt and 3 others like this.
  6. Webdog

    Webdog Up to 91% remain undiagnosed

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    California
    In the past 35 years, I've worked approximately 6 years full time, 16 years part time, 8 years school, 8 years no work (some overlap of part time work and school).

    Currently I'm unable to work. Perhaps what frustrates me most is having left some great jobs with good companies which almost certainly would have accommodated my illness, if I had a medical diagnosis.

    However, a ME/CFS diagnosis didn't happen until a year ago. I had no idea what was wrong with me or how to manage my symptoms while working.
     
    Last edited: Jul 4, 2016
    taniaaust1, MEMum, alkt and 4 others like this.
  7. erin

    erin Senior Member

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    Unable to work now. I was part timing until beginning of this year. I probably won't be able to work from now on. I rely on my husband. I am really sad, I enjoyed my work.
     
    MEMum, alkt, Jennifer J and 4 others like this.
  8. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Cornwall, UK
    After struggling to work from home for 20 years (due to this damned illness), just a month from early retirement, I became not only unable to work but also unable to do my accounts. I can't even remember where everything is.

    This happened four months ago.
     
    slysaint, MEMum, AndyPandy and 7 others like this.
  9. TigerLilea

    TigerLilea Senior Member

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    Vancouver, British Columbia
    I work part time from home doing office work. I work two weeks on - two weeks off. As long as I get the paperwork to my client by the due date, I can make my own hours and if I can only work for an hour or two some days, there's no problem. I couldn't work at an outside job because I never know day-to-day how much energy I'm going to have.
     
    Tunguska, MEMum, MeSci and 6 others like this.
  10. KristenSF

    KristenSF

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    San Francisco, CA USA
    I work full time from home, and I constantly have to reassess whether it's a blessing or a curse. A month ago I was struggling to keep up, and was working extra on weekends and wearing myself out. I hadn't had significant cognitive impairment up until a couple of months ago, but I was beginning to feel it creep in.

    A month or so ago I was planning to file for disability, but I had a sudden improvement in cognitive functioning after starting Low-Dose Naltrexone. I'd taken it briefly (and at a lower dose) months ago, but I didn't have significant cognitive problems at the time.

    Whatever the reason, something improved and right now work is a great comfort to me because it keeps me focused on things other than my physical symptoms. I've had a lot of abdominal distress lately (I have SIBO and am on antibiotics for other things like chlamydia pneumoniae ). On days recently when my abdominal pain is really bad, in addition to my chronic pain, I am so grateful to be able to absorb myself in work, because I think I would probably sit and cry all day otherwise.

    Having said all that, I could not work outside the home, at all. I only leave the house for doctors appointments and haircuts every couple of months, and those leave me wiped out for days. I should also note that I think the type of work I do is a good fit for someone in my situation. I manage a website that I edit throughout the day, and write and edit some of the content for it. I've been doing this specific job since 2008, and a lot of it is rote. I can log on in the morning and start completing tasks without having to concentrate too much. I have to participate in a couple of meetings by phone each week, which usually involve, "How are you feeling Kristen? Are you better? You sound great!" *sigh*

    Another thing that I think is key if you're going to try to work from home is to get a good ergonomic set-up. Get a good desk with a keyboard tray, an adjustable office chair, and if you're working on a laptop attach a full-size monitor, keyboard and mouse. My first few months I worked at home I was using a laptop and started to get all sorts of back and hand pain from that.

    I feel lucky right now to be able to work right now, but I've learned the hard way that everything can change from moment-to-moment with this, so we shall see.
     
    Tunguska, erin, MEMum and 8 others like this.
  11. acouchy

    acouchy Unwilling ME/CFS Participant Since 1998

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    Canada
    No for me. Haven't worked for someone else for about 7 yrs. I do have my own little online business. Might be able to spend 2-8 hrs a week working on it. Not very good at it but it helps keep me sane.

    I worked at a very physical job for the first 11 years of my illness. I did it by not having any social life. Get off work, eat takeout and sleep. Repeat. Weekends I would sleep 12 hours a day.

    When my illness got worse I dropped down to working 4 days a week. Working with this illness was a nightmare. My co-workers hated me. They humiliated me and made me cry. I have never in my entire life been treated so poorly. Unbelievable.
     
    Last edited: Jul 4, 2016
    taniaaust1, erin, Justin30 and 8 others like this.
  12. alkt

    alkt Senior Member

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    uk
    no for the first three years after i got sick i could barely walk ever step required so much concentration going anywhere always wiped me out . but strangely it took me ten years to stop thinking about possible employment and to no longer read the job vacancies in the papers. once i had decided that work was no longer an option for me it removed a lot off stress and frustration. i think once you realize that your job title or work status is no longer a matter of personal choice. those frustrations no longer bother you . although they do seem to bother the dwp greatly.
     
    taniaaust1, erin, Gingergrrl and 3 others like this.
  13. musicfan50

    musicfan50

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    NZ
    I don't know what answer to put as I have been more or less coping for 25 years but now I'm in a hole..I seem to have recurring headcolds that keep me at home sick.
     
    MEMum likes this.
  14. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Cornwall, UK
    Are you sure they're not PEM - post-exertional malaise?
     
    musicfan50, Webdog, ryan31337 and 2 others like this.
  15. PennyIA

    PennyIA Senior Member

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    Iowa
    I seem to 'survive' in remission mode. I can work, but it's at the cost of what I can do socially and includes decreased time for self-care. When I crash, all bets are off and I'm on STD. Thankfully so far, by being very aggressive about pacing even more so during crashes, I seem to be able to bounce back and get back to work.

    The only reason I keep pushing myself back into the office is that they are very accommodating and if I can keep it up, I'll get regular raises. When (not if) I can't do it any longer, my Long Term Disability insurance SHOULD kick in and the more I earn before I can't work any longer the more they'll pay and it might almost be enough to cover expenses and make living on disability less of a problem.

    Well, at least that's the hope... who knows how it'll work out in the end.
     
  16. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Cornwall, UK
    What's STD?
     
    slysaint likes this.
  17. PennyIA

    PennyIA Senior Member

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    Short Term Disability. I get 100% of my salary for the first three months I'm not able to work due to illness, then 75% for the next three months. After six months, I become a candidate for Long Term Disability... thankfully I've always bounced back before that has happened.
     
    Mel9, Jennifer J and MeSci like this.
  18. musicfan50

    musicfan50

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    NZ
    Thanks. Post-exertional malaise? I might have once thought that - but now I feel like I am suffering from brain inflammation. I felt like I was recovering at one point as I was briefly on a strict vegetarian regime - vegan - as I am convinced that milk mimics glutamates. But I didn't keep it going. I felt like it still wasn't doing anything for my sleep, but I might start taking more supplements now for that side of it. Like Penny I have a very accommodating workplace with heaps of opportunity but it seems to be slipping from me these days. My work days are getting shorter, I'm using more leave, etc. used all my sick leave in a matter of weeks the last two years..
     
    Jennifer J likes this.
  19. Justin30

    Justin30 Senior Member

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    This poll is just a prime example of the severity of the disease. The inability to provide for ones-self and ones family.

    Makes me sad to see that this is the sad truth of this disease that affects millions world wide.

    Wishing for hope and better days to come.
     
    taniaaust1, OkRadLakPok, alkt and 8 others like this.
  20. Gingergrrl

    Gingergrrl Senior Member

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    USA
    I cannot express how much I loved my career and wish that I could still work but I know this will never happen again. I worked from age 15 to 43 (with the final 16 years in my career).

    I got sick in stages with different triggers but the final illness in 2013, I did not recover from and developed POTS. I worked full-time another entire year until my breathing was so bad I could not walk from the parking lot to my office.

    I finally went on short term disability and my employer held my job for a year but I got sicker and sicker and was approved for SSDI this year on first attempt. Luckily I purchased a long term disability plan when I first got hired (literally NEVER believing I would need it) but thank God I did b/c the plan combined with SSDI keeps me afloat financially.

    But the loss of my career itself and the identity that goes with it has been hard. I wish I was well enough even to do volunteer work but since I cannot walk or drive, it's not realistic. But if I ever regain a fraction of my ability to breathe/walk, I will find a volunteer opportunity straight away b/c I enjoy feeling useful.

    I do a lot for my family, husband and step-daughter and coordinate everyone's schedules, appointments, etc, and we are moving apartments next week so I never feel bored vs. angry/sad at all of the family opportunities that I miss.

    I also miss the daily camaraderie of having co-workers and clients and helping others. Am also sad about the way my career ended which was so abrupt and never how I envisioned it after being such a loyal employee but nothing I can do about this now.

    I still identify with my profession, and would still choose it if I could go back in time, so no regrets in that regard, only that it ended at age 43 due to illness vs. I had fully intended to work until age 65 or beyond.
     

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