What M.E. feels like.

I’ve decided not to say on facebook how I’m feeling. Looking at “on this day” I seem to go on and on about how much I sleep or how tired I am. And I’m not sure it’s very interesting for anybody really.

So this post is an effort to explain how it feels when I’m having an “episode”.

Last week I did some gardening on Sunday. Monday we had a demonstration of a Thermomix. Tuesday I went to see my friend. Wednesday I had my hair cut and lunch with another friend, then went to the library and picked up five books. Thursday was counselling. Friday I had a meeting. Saturday I helped unload the shopping. That is way, way too much for me in a week. I know that I should do a maximum of three things per week. But sometimes it just doesn’t work out like that. Life is just messy.

However, as a result, I have had to cancel everything I’m doing this week. It feels as if I’ve had the flu. I drag myself out of bed at about 10.30 am. Can’t wait to get back in there and just sleep. Standing up and walking to another room leaves me shaky and aching. My brain is just not working properly. Haven’t picked up my knitting or my guitar for a week now. And I feel sad about that, even though I would feel much worse if I did try to knit or play and it went badly.

We like to try and answer the questions on University Challenge, and award ourselves one point for each correct answer, as long as we actually say it before any of the panellists do – including when they’re discussing amongst themselves what the answer might be. Well, unsurprisingly, on Monday night I did very badly. But I’m not going to beat myself up about it, because I’m in the middle of an episode.

And I’m even more clumsy than usual. I managed to spill a full glass of water all over some magazines and stuff on the table next to where I sit in the lounge. Involved two large napkins, two hand towels and a teatowel to soak it all up. But it was only water, and I didn’t actually break the glass.

Some days I can actually shower and dress, other days I just get out of bed and slob around in pyjamas or old “working” clothes (an old t shirt and very old paint covered trousers). I haven’t been able to wash my hair for three days now. Usually I wash it every day. I’m hoping I’ll have the energy to wash it today. I do like it when I’ve showered properly, I feel clean and I smell nice. But it’s just such an effort that I need a long sit down afterwards.

I can cope with reading for short periods. I can play Solitaire on the computer, or my tablet. But that’s it. I was planning to do some baking in the new toy (the Thermomix) but that’ll have to wait.

And next week I only have to see the doctor on Monday, and the counsellor on Thursday. And that’s the way I’m intending to keep it.

And that’s about it really. I don’t intend to sound self-pitying, so apologies if I do. This was really just to blurt out how it feels during an M.E. episode. If you’ve made it this far, thanks for reading. If any of you have M.E. I send hugs and sympathy.

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