Living with M.E. as a software developer

This is not a sob story. I’m just going to tell you about how I feel.

I wouldn’t normally write an article like this on my professional blog, but I’m fed up and want to reach out to people and share my experience for anyone who is interested.

Many of you have noticed that the posts on my blog are very sparodic. Well, a few years ago, I started to get tired easily and found myself needing 12 hours of sleep per day. I thought that I was just someone who needed more sleep than average, although it was frustrating that the days were so short. In the last 2 years, I’ve been extremely tired, and out of professional work, my sleep level rising to 16-20 hours per day, constant pain in my back, neck and shoulders (which is occasionally excruciating; I pop painkillers like candy), a strong sensitivity to changes in temperature making me feel very hot and cold all the time (thermostatic intolerance), regular headaches that I never used to get, periodic bowel irritation, weakness in the arms and legs to the point that some days I can’t walk and others I am so tired that I can’t even lift my phone to call someone for help. Sleeping does not actually make me feel any more refreshed, I am usually just as tired when I wake up as I was when I fell asleep. Mentally, my brain is full of thoughts and ideas, but physically I am quite destroyed almost all of the time. If I walk the ten minute distance to town and take a coffee, a typical result for me would be 1-2 days of sleep afterwards. Finally, in October last year, I received a diagnosis of M.E.

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