Work and ME

I have been determined to get back to work since I became sick. I even went to work when I was sick with the virus that was the precursor. I have put a lot of effort into my career and it really hurts that I can’t do what I used to.

But I still have a job and a little proportion of my old income. Aside from the identity work gave me, it also gave me a good income and I miss that too. I also missed my colleagues and working with smart, interesting people.

I’m lucky that I have the kind of job I can do from home. I’m also lucky that I still have a job.

My doctor said I could work 8 hours a week from home and my employer agreed. I thought this would be just a short step in journey back to working like I was before. Oh gee was I wrong about that. It was more than a year before I could increase it even by one hour. I think my doctor knew that it would take a long time before I could increase my hours but didn’t tell me. Not knowing was good, otherwise I might not have bothered going back.

Coming back to work, I had forgotten all my passwords, log in details and processes to follow and it took a few weeks before I was of any use, really. I’m still working at a slower pace than I used to and sometimes I doubt the quality of of my work. I can confess that here.

I have to keep detailed records of where things are up to because I simply forget.  I use all the reminders I can: calendar appointments, post-it notes and emails to myself.  I can only concentrate on one thing at a time, no more multi-tasking or flicking quickly between tasks.

Work organised for an occupational therapist to come and assess me. The OT checked my desk set-up, asked about the type of work I was doing and how I structured my day. The OT didn’t make any novel suggestions. After living with myalgic encephalomyelitis,  I’d worked out the things that worked best for me. My doctor has written me a note excusing me from meetings longer than 45 minutes so I no longer sit through two hour marathon meetings. Really, no one should have to sit through two hour meetings, it can’t be good for anyone’s health! Although it is a teleconference and no one can see me lying on the floor.

I work in 45 minute blocks. After that my concentration plummets and my body stiffens so I need to stop, if I haven’t already ground to a halt by then. Quite often my body is as reliable as the clock on that one.

Lots of people warned me about taking it slowly and my doctor has made sure I do. I can tell the quality of my work suffers when I overdo it and some days I just can’t work at all and have to put it all away until the next day and try again then.

My advice for you if you are thinking about transitioning back to work is to try it, but put yourself first. I try to remember that my health comes before any of my deadlines. I like being back at work, my colleagues and bosses have been kind, it is satisfying to work again and the money helps.

Do you work? How do you manage it?


About someonesideaofluxury

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

6 Responses to Work and ME

  1. Megan S says:

    I haven’t made it back to work yet but I hope to at some point. I’m lucky that I have a job that is being held for me at the moment. I’ve been off over 6 months now and so far no noticeable improvement.

    • It is good that you have a job to go back to, look after yourself and hopefully you’ll get there. I remember what it was like when I’d been off work for six months. I probably thought about going back to work more than I should have. Be kind to yourself, it is hard work looking after your health with a chronic illness. x

  2. aussiechick says:

    It is great you have been able to get back to work. I have been working full time for 9 years, with some short breaks between jobs. In 2005 I had a bit of time off (couple of months) when I was diagnosed with CFS. More recently I had a relapse and had two weeks off work, then did 3 days a week, then crashed again. I am now on extended leave without pay and about to move to my mums so I can take some time out and not work for a little while. It is a relief that I will be able to do this and look after myself. As people with chronic illness, we always seem to forget we need to look after our health and ourselves before anything else. I commend you on being able to do this. Well done!

    • Thank you, it means so much more to have a ‘well done’ from someone who has an insight into what is it like with CFS. This week I didn’t work all the hours I was meant to (even though they aren’t that many) but I know I have to look after my health first.

  3. Pingback: Working vs not working with ME (or the time I lost my job) | someone's idea of luxury

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

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