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ME/CFS and working full time - how do you cope?

Posted , 9 users are following.

Dowsett1987
Dowsett1987

Hi there, 

I've recently been diognoised with CFS and fibromyalia - after years of being seen by different specialists. January 2015 I was diognoised with a kidney problem, which my body has taken an extra hit for. I started a new job in January and don't want them to know about all my medical problems at the moment, so suffering in silence. 

I'm finding it increasingly difficult though. I just don't know how people cope with ME/CFS and working full time. Any advise would be much apprechiated. Are there any supplements anyone takes that they feel helps etc? 

I'm watching the clock today, desperate for my bed. It's really affecting day to day life, my work and my life is suffering. I don't know how much more I can take x 

0 likes, 6 replies

6 Replies

  • ni888
    ni888 Dowsett1987

    Posted

    I am in the same situation. It takes all of my will power and strength to make it through the day without collapsing. I started a new job 2 years ago, did not tell them anything. After aboyt 6 months came down with a cold and remained bedridden, unable to walk for a month. This year is only worse, was disabled for two months, unable to walk. However, although nothing helps in the long run, I can recommend a few short term aids that might help you more than me:

    1. Provigil/Nuvigil to keep alertness

    2. Magnesium IV once every few weeks

    3. Vitamin B muscle injections twice a week

    3. Nexavir injections (no longer available in the US unfortunately)

    4. Concerta or Adderral for concentration

  • jeanp
    jeanp Dowsett1987

    Posted

    If you are in the UK and have a diagnosis of CFS/ME, you will be covered by the Disability Discrimination laws. This means employers must make reasonable adjustments to your work, which might be regular rests, change to hours, change of work duties etc. Action for ME have useful information about this, and advice about when to disclose your condition or not.

    Having said that, some employers are not known for sympathy with illness, and it might take a fight to get what you need. I would think that supplements can only be a short tem measure, what your body needs is rest and recovery time.  Good luck with your recovery, I know what it is to sturggle at work (which is why I am now reducing my hours still further).

  • jackie00198
    jackie00198 Dowsett1987

    Posted

    When I first got ill with ME/CFS, I tried to push through the fatigue and keep my full-time job. I would lie down in an employee lounge during lunch. Then I got so ill one day that I thought I was dying. I went home, and that was my last day of work. This is a cautionary tale. If you keep pushing through your fatigue, your body may eventually make a decision for you--one that you won't like. Take it easy and stay withing your energy envelope. Pace yourself and get plenty of rest. This is the only pathway I know to possibly feeling better.

    • Jk1952
      Jk1952 jackie00198

      Posted

      I agree with Jackie. I worked until I was forced to stop. Literally couldn't go on. If only I had given up work sooner there would have been a chance of recovery and at least gone back to work part time. I never worked again. I left work when I was 47. Now retired. Cautionary tale indeed!

    • elaine62759
      elaine62759 Jk1952

      Posted

      Me too, pushed and pushed myself to keep working until my body closed down and not even able to walk. Lost my job 10 years ago and have never been well enough to work since. Was also told if I hadn't pushed myself so hard I would have had a better chance of recovery. Seems to be a pattern here...

  • isabelle17
    isabelle17 Dowsett1987

    Posted

    Hi everyone

    I have had cfs and been pretty much working full time for 2 years (obviously with some abscence!)

    As has been said please done push yourself too hard but if you are able to work things that have hugely helped me:

    As mentioned you are protected by The DDA act, my work sent me to an occupational health doctor - I was very dubious but it was amazing and so good to get a second opinion.

    I agreed flexible hours my symptoms are much better in the morning so I come in an hour early and leave an hour early so I can sit down on the tube :-)

    Acupuncture is amazing really helps

    Yoga is also good or if you are too tired some gentle stretching!

    Hope this helps, smile

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