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ME/CFS and Beating the Clock
For Jody Smith, the ticking of a clock was enough at one time to chase her back to her bed. But with the passage of time, she has been able to reclaim her living room ...
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Do you work / have career?

Discussion in 'General ME/CFS Discussion' started by RedLineBoy, Jul 26, 2013.

  1. PennyIA

    PennyIA Senior Member

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    I take lots and lots of notes. Like EVERYTHING has to be written down. And I don't do any direct coding any longer - just tell others what they need to do and help them organize their work. But, yeah. My personal opinion is that I can't do my job very well. I can do it, some days are better than others, but there are a lot of bad days where all I can do is listen to the phone calls and just not make things worse by trying to contribute.

    I have bone-crushing fatigue from morning to night. I have post exertional malaise. I have chronic pain in my left calf (muscular) and left knee (joint); my left arm (who knows what)... and the middle of my upper back. Peripheral Nueropathy on my right side that they swear isn't related to anything. I also experience frequently OI-types of symptoms, sometimes for months on end where I end up 100% bed-ridden. - but the doctor insists all of the OI-like symptoms can't be OI (and I'm tired of fighting him).

    I'm undiagnosed, but due to the PEM, I think I probably have CFS along with something else undetermined. A lot of my symptoms can be tied to B12, B6 and Folic Acid deficiencies which the methylation protocol is supposed to address. If it fixes things, awesome, if it just reduces my symptom list, that would be ok with me. Heck, I'm ok with just a remission (though I'd be a LOT happier if I could come back in a few years and be able to say that it's a treatment that provided long-term relief).
  2. WillowJ

    WillowJ Senior Member

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    that is seriously wonked.

    I was thinking more about advice about what career will be around for a while and can be done low energy (and that one could drop in and out of, if necessary) than the personality tests. I've not had those, but I did have a nice chat with a disability counselor at one point, and an academic advisor at another. A lot of good it's done me, since I got worse instead of better...
    golden likes this.
  3. SOC

    SOC Moderator and Senior Member

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    I was told, long ago, by a "career counselor" that I should be a piano tuner. o_O

    Disability counselors can be really good, though. They have a sense of what jobs are working for people with limitations.

    Great idea, WillowJ
    beaker, WillowJ and PennyIA like this.
  4. Ema

    Ema Senior Member

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    beaker, WillowJ and SOC like this.
  5. RedLineBoy

    RedLineBoy

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    So today I decided to take 200 mg of 5HTP and suddenly my headaches are gone. I'll see how I feel tomorrow.

    So someone with CFS what can do they do to financial keep float?
  6. SickOfSickness

    SickOfSickness Senior Member

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    I suggest preparing for the worst. Imagining that in a few months or years they can do very little work anymore, so their income is extremely low or non existent. Doing everything that might help themselves down the road financially is just one way. (Cutting costs.) Another would be physically making things easier on yourself later. For example if a person lives in a building and has to climb stairs, I suggest moving to a place without stairs. Perhaps moving closer to someone who can give help when needed. Limiting energy and resting more.
    Tally, peggy-sue and SOC like this.
  7. golden

    golden Senior Member

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    I sat there thinking about training to be a piano tuner for a while !
    I would like a list of Alternative jobs....like this ...it might be helpful!
  8. SOC

    SOC Moderator and Senior Member

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    It would have made more sense if I was the least bit musical. ;)
    WillowJ, golden and SickOfSickness like this.
  9. RedLineBoy

    RedLineBoy

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    So taking 200mg of 5 HTP I feel good and normal...At least for moment I feel sense of normal being. Is that a good progress or a placebo?
  10. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Probably something about 5 HTP is good for you--raising serotonin? It won't cure you but feeling better is good!

    Sushi
  11. SOC

    SOC Moderator and Senior Member

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    So maybe you are serotonin deficient? There's meds for that. :)
  12. jimmy86

    jimmy86

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    Haha, I'd like to be a piano tuner, actually. Instead I am a PhD student, which I like very much too.
  13. Butydoc

    Butydoc

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    Unfortunately I'm a surgeon. I had to go on a leave of absence last September because of my increase crashing and worsening brain fog. I won't be able to return to my profession unless I'm substantially improved. Oh we'll.

    Gary
  14. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    So sorry to hear that! My autonomic specialist used to be a hospital internist but had to go on disability due to passing out on rounds! He went back to medical school and studied the autonomic nervous system and now has a limited private practice.

    So sad to hear of more practitioners becoming so unwell. I hope you find appropriate treatment that will allow you to practice again.

    Very best wishes,
    Sushi
    Valentijn, WillowJ, ggingues and 2 others like this.
  15. RedLineBoy

    RedLineBoy

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    Umm...how is that your a doc and can still work? How do you keep your concentration going?
  16. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    RedLineBoy

    Butydoc said:

    In other words, Butydoc is not working.

    Sushi
    SOC likes this.
  17. RedLineBoy

    RedLineBoy

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    The problem is I was hit with CFS when I was 19 so I really could not feel normal enough to devote time to building a career.

    I wish I rather would have of been hit with CFS in my mid thirties or so. By then I would have a career.

    This disease dose not take your memory or skills away so once you know something you will always be able to perform.
  18. SOC

    SOC Moderator and Senior Member

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    You don't know what you are talking about since you did not train for years for a profession you now cannot perform. Your situation isn't worse than that of someone who got sick in their 30's. It's not the same dreadful you are experiencing, but it's an equally dreadful different situation. ME/CFS is terrible whenever you get it.

    Have you been reading this thread you started? Doctors, lawyers, engineers, and others are telling you that they are NOT working at their chosen professions. This illness does take away memory and skills. You might benefit from reading the CCC or ICC definitions of the illness.
  19. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Fraid I agree with SOC. Most of us who trained for careers and not working because ME/CFS does take away memory, skills, and the mental acuity to try to put them together. Plus it takes away the stamina necessary to work and follow your career.

    Sushi
    Moxie, Lala, peggy-sue and 3 others like this.
  20. RedLineBoy

    RedLineBoy

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    I'm not saying CFS does not take away your mental stamina. It sure does but what it does it still allow you to work part time and perform somewhat. Enough for your to financially support your self.

    I have not met many doctors and lawyers who have CFS so I'm basing my own opinion.

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