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Working with CFS/PVF/ME?

Posted , 3 users are following.

emma83518
emma83518

Hi! I was wondering how many people on here have been able to work while suffering from PVF/CFS/ME? I know there are so many variations of how people feel with the illness. If anyone has been able to work, what type of employment are you in? Have you adjusted the type of employment due to this condition?

I'm having a mix of good days and bad days, and wondering if anyone can advise on a job that may be suited to this? I guess like everyone I just want to gain some sort of normality and financial stability!

 

0 likes, 5 replies

5 Replies

  • jeanp
    jeanp emma83518

    Posted

    Hi emma,

    Have had (probable) CFS since January this year. Have had quite a bit of time off, but so far have been able to keep working. I work for a FE college, as a learning support assistant, which means it is sometimes stressful, and sometimes I don't get good breaks during the day, but there is quite a lot of time off. For example, broke up on July11th, don't have to go back until 28th August. (Don't get paid for these hols unfortunately, but it is worth it to have weeks off.) We also get two weeks at Easter and Christmas and a week off for half term, and this helps enormously to recover from the weeks I am working. I did have a phased return to work in March and did some short weeks, then short days, and my boss also changed the work I did (was supporting a catering student in the kitchen which meant being on my feet all day) and I switched to sitting down work - all this helped a lot. However, I couldn't have done it without getting a lift to work every day and most days back home again. It is only a mile away, but uphill; I used to really enjoy walking to work as I live by the sea and the first part of the walk was along the seafront, but the days I did this I was SOOO tired, had to stop. I also spent some time lying on the floor in a quiet room towards the end of some days, when i could or needed to - this wasn't official, but my energy levels were so low I couldn't do anything.

    So when I go back at the end of August, not sure how I will cope. I have a month before I go into hospital for a hip operation at the beginning of October, and will be trying to conserve my energies as much as possible, as I don't want to go into hospital completely knackered - it won't bode well for recovery from major surgery. The autumn term is definitely the toughest, with hundreds of new students, new teachers and routines to get to know. So I may need to cut my hours down temporarily. Am expecting to have at least 12 weeks off to recover.

    I would think some sort of agency work might suit you best, so that you can agree to or turn down work depending on how you are feeling. What are you doing at the moment?

    • emma83518
      emma83518 jeanp

      Posted

      Hi Jean, thanks for your reply. It's good to hear that you have been able to keep working, and that the place that you work are accommodating to your condition. Do you know what might have triggered your CFS?

      I picked up a parasite while traveling, and after returning to the UK in December I haven't been back to work as such. For the beginning of the year I was just not functional to work due to the chronic fatigue and aching heavy body, but thankfully by June I took on some temp work for three weeks. This was a full time admin position, but the hours weren't very good and I was a complete zombie! It took me a few weeks to recoup after finishing that job, so I'm trying to find something less demanding, but also with an understanding boss - I'm not sure if that's really possible!

       

    • jeanp
      jeanp emma83518

      Posted

      Have you thought of doing some sort of freelance work at home? Proofreading, editing, indexing sort of stuff? then you could control your hours and work when you are feeling up to  it. I think temp work must be quite stressful as you are constantly in a new environment with routines and people you have to get used to very quickly and fit in with.

      Yes I am very lucky to have a very understanding boss and the college is fairly flexible. Each department has its own way of doing things!

      Not sure what triggered my CFS, had quite stressful time at work in the three months before christmas, but can't remember any particular viral infections (don't think I even had a bad cold).

      Good luck with looking for work.

       

  • Bubbles61
    Bubbles61 emma83518

    Posted

    Hi emma,i think it is really down to the individual person,how old thy are, what their life has been like, wether they are a strong minded person &positive in life generally, iv had. m e since 2001,& The highs n lows have been incredible, i have worked to bring my kids up, but how i do not know, so so many tyms i just wanted to lay down n never wake up,& but some how found inner strength to keep goin,i didnt have any help or anyone to help or support me so i had too, but i would not do it again, its taken me along tym to realise you have to be selfish & put you first,& only do what you can,&  rest rest rest when you have too, i no it all comes down to life & money etc, but some life is better than no life, life is all too demanding as it is, with out being ill,it doesn't matter what job you do, with m e its what it allows you to do, thrs no job where you can keep lying down,or not turn up for days on end,( except politicians) find a level that suits you & be honest with the people around you,& explain how you feel & how weak etc,, m e recognition  has come along way the last few yers, so take the help thats there, & help yourself to get the best out of how it changes your life. Regards. Andy
    • emma83518
      emma83518 Bubbles61

      Posted

      Thank you for your reply Andy, you're definitely right, the condition affects people in very different ways. I am really thankful that I can now do a bit more (a few months ago I could barely leave the house!), as I know many people are completely debilitated.You have done so incredibly well to raise your children and work with the condition, I hope you are now getting more time to rest and heal. Thanks for your help and kind words.

       

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