Work and health dilemma

Posted , 7 users are following.

Hi. I've had ME for about 13 years and although during the early years the symptoms would fluctuate there has been little change for the last 6 years or so and it got so bad that I kept going sick from work and had drastically cut my hours to just 2 half days a week which I've been doing for about the last 3 years. My employer has been very accommodating and they still make me feel like a valued member of staff and I like my job but I have continued to struggle to manage even this. I put on a brave face and push through but the truth is I feel dreadful and working is using almost every bit of energy I have, leaving nothing for myself. I can't look after myself as well as I should, I'm too exhausted to prepare healthy meals or clean the house etc. So I keep thinking I should leave my job and concentrate on improving my health and maybe have some kind of life outside of the work and crash cycle I currently operate on but I talk myself out of it because it quite scares me not to have the security of a (small) regular wage. I get some benefits (my job counts as 'permitted work') but it's not a reliable souse of income and I'm scared of them taking it away and I shall be left without any income at all and be forced into an even harder work situation. But if I get better it might be worth the risk.Has anyone else out there given up their jobs and found any great health improvements? Thanks.

0 likes, 4 replies

4 Replies

  • Posted

    Hi there Olivetree,

    it is so difficult to know what to do isn't?

    After getting this horrendous condition in 2014 I have gone from working full time to part time to not working at all. After a particularly bad episode (May 2017) I decided to have complete rest and didn't work for 15 months. I literally looked after myself only, my husband shopped, cooked and cleaned etc. I'm sad to say that this rest period made absolutely no difference. I had a few weeks of perking up and be able to go for a short walk to bed ridden again. During this time I felt mentally even lower than ever, not depressed just sad, frustrated and lonely.

    I am incredibly lucky in that I own a shop with my daughter so can have days or weeks off when I need to and at short notice.

    So basically, for me at least, having complete and absolute rest didn't work.

    Sarah x

  • Posted

    hi i have had me about 6 years and it stopped me from working as i tried to push through it i understand your situation but i think its crucial to rest fod the body to recover but everybody is different with m e some people stay the same i can only say from my point of view if you could manage to not work i think its worth a try my consultant always would say you have to rest to do more all the best with things sleep is also crucial to sort out if not good take care

  • Posted

    Hi Olivetree

    I've had ME for over 20 years. I used to work full time then was off work a year with glandular fever which I was told had developed in ME. I tried to go part time working half days (17 and a half hours a week) and struggled on like this for about 10 years with constant spells of working a few weeks, relapsing, being off sick for a few weeks, back working, off sick again, etc. Like you I had no life at all outside work and spend any time not at work resting and sleeping trying to make myself well enough to have the energy to go back to work. Eventually I had a really bad relapse where I ended up bedbound again for months and they got rid of me.

    I was really upset at the time but then I realised it was a huge relief not be have the pressure of being well enough to go into work. I spent some time trying different therapies and improving my diet, trying to get some enjoyment out of life again and tried things like gentle yoga classes and art classes. I felt I improved quite a lot and was hoping to try and find a more local job for a few hours a week. Unfortunately my hormones had other plans and I started going through the menopause and all my symptoms came back again!

    I used to get incapacity benefit but they took it away when they changed the benefits system. I'm married so we just manage on my husbands pay. But even though I've got a lot less money I'm probably happier than I was when I was struggling working. If you're on your own you could possibly try talking to Citizens Advice to see what benefits you might be entitled to if you gave up your job. I think you might need to make sure they know it's on health grounds or there might be a period of time you wouldn't be entitled to any money. You could maybe try seeing how you would manage on less money by cutting back on your spending for a few weeks and putting some money aside for emergencies.

    If you give up your job you might see some improvement but don't think that it will cure you by not working. Remember, if you did improve then went back to work your symptoms could come back again.

    Good luck with whatever you decided to do - it's not an easy decision to make!


  • Posted

    Medical retirement for me has made me feel a lot better, I can do those things that need doing around the house now.

    But it didn't make me recover , if I ever do anything like going up town to look around a museum or some-such, I then need a couple of days to recover, just as it was when I worked part time.

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