Working vs not working with ME (or the time I lost my job)

Work is important to me and there are so many things I enjoy about working but it isn’t easy with illness.

At first, my workplace was sympathetic, holding my job for me and letting me take leave without pay when my sick leave ran out.  After about six months, I could do some work – eight hours a week from home. I was ultra keen to get back to work and thought I’d increase my hours pretty quickly but it took about a year before I could increase them or be well enough to into the office.

Going back into the office was challenging. I have noise, smell and light sensitivities, plus a lot of people wanted to chat to me and find out how I was, so I didn’t get much work done the first five times I was in the office, but the occupational health and safety officer was supportive and told me not to worry about that, I’d soon settle back in. I wrote more about it in this blog post, Work and ME.

Getting dressed for work probably deserves its own post! It took effort to dress, pack food (as there was nothing suitable for me to eat in the work cafe), painkillers and the work laptop and papers, then drive to work (about an hour round trip door-to-door).

After increasing my hours, I was always evaluating whether I could do more. Both to earn more money, contribute more to my team and also because job cuts were looming and I didn’t want to lose my job. It shouldn’t have been so hard, because logically my health should have come first, but I found deciding how much to work difficult. I would go into my doctor’s office and negotiate, always trying to push for more and he joking called me a ‘bully’ for trying to get him to increase them when he felt I wasn’t ready.

Sometimes I found it hard to meet the number of hours I was meant to do, I wrote a little  about it here.

My dilemma was resolved when my position was cut in a restructure. About half my colleagues lost their jobs as well.  I was upset about losing my job and the process seemed to drag on, which was stressful and not great for my health.

I finished work a couple of months ago and am only now reaching an equilibrium. When I first finished work, I did too much. Too much socialising, exercise and housework, to try and make up for the times I’d given up socialising or exercise in order to have energy for work. I also felt like I couldn’t afford to keep cleaners because I wasn’t working anymore.

Then I was miserable because I felt worse, when I expected to feel better. So I cut myself some slack and didn’t make any appointments (social, massage, sauna, yoga classes), borrowed a huge pile of books and movies and just relaxed. It helped!

This week I’m back into a gentle routine, going out for a yoga class and infra-red sauna and massage appointments – feeling better, not using more energy than I have and hopefully saving a little for my body to use for recovery.

I still miss my job but I’m planning to use the next six months to work on my health instead, then think about a job that suits me and how my health is then.

How are you? Are you working? Do you want to?


About someonesideaofluxury

writing from home with my feet up
This entry was posted in Advice, Life with myalgic encephalomyelitis and tagged , , , , , , , , , . Bookmark the permalink.

One Response to Working vs not working with ME (or the time I lost my job)

  1. Pingback: Getting dressed and ready for work with ME | Recovering from something horrible (myalgic encephalomyelitis)

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