IMAGE DESCRIPTION: An image of a notepad, glasses and a pen with a circular image of Mike with his cat, Jet. The title: Severe ME Week 2023 7th -13th August. The ME Association logo (bottom right)

Severe ME Week 2023: Mike’s Story

I have had severe M.E. for 26 years. I fluctuate between 25% and 30% capacity on the Bell disability scale. I am mostly housebound.

When it first started I had glandular fever for six months. I was bed bound and I couldn’t walk. I went down to under 6 stone in weight and I was essentially a skeleton in a bed. During the glandular fever, I read and listened to Radio 4. But then one day, I remember it clearly and I found that I could no longer read. I couldn’t focus my eyes on the words.

That was the day that glandular fever became M.E. I was bed-bound for another year after this day but eventually, I started getting out of bed and sitting in a chair for a short while every day. I couldn’t really stand very well and getting to the toilet was quite a challenge. My muscles just couldn’t support me. I couldn’t easily get out to the doctors at this time but I managed one time to get to see a GP and was told I have post-viral fatigue syndrome. It took a further 3 years before I learned that I had M.E.

Walking has remained a challenge even though my muscles are no longer atrophied. Some days I cannot manage a single step without severe difficulty and often I am forced to remain upstairs because I cannot manage the stairs.

Up until recently, I would challenge myself to have a short walk in the woods, once a month. I sat on every bench and the distance between benches was quite short. But it took years of physiotherapy and pain to reach that point. It took me 10 days to recover afterwards. I was quite proud of this achievement, although I recognised this was a boom and bust cycle. What I appreciated about the woods was the quiet environment. One of the things that makes me mostly housebound is severe sensory overload when outdoors. I just can’t process the light and noise at all. So no bars or cinema. I sometimes go to cafes but it isn’t really worth the pain of subjecting myself to the loud and difficult environment.

I still sleep 14-18 hours a day and suffer from chronic migraines. As I am writing this I have had a severe relapse. My functioning is the worst it has been in years. I cannot socialise even with one person. I am still not bed-bound but I am sleeping quite a lot. I very much doubt I will be going for a walk any time soon. I am concerned that the walk in the woods has contributed to this relapse, which is a shame. The frustrating thing about sometimes having 30% capacity is that I can do so much more from well-rested but it is an illusion, which masks my true capacities. They are always much lower than I think. I am not planning to go back to the woods when I recover.

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