I recently ran an experiment where I live-tweeted my day. I ended up sharing symptoms and struggles I haven’t before…
“This is a brilliant idea!” I said to myself. I’d been looking for a way to do something for ME awareness this year without doing myself in like I normally do. I’d come up with the idea of live tweeting a day in the life of ME/CFS (and my other illnesses: Lyme disease, Endometriosis and Fibromyalgia).
I saw it as a kind of experiment, to make me think about and share things that have become a normal part of life for me but might surprise others. Turns out, there was another element to this I hadn’t considered: how much of my energy is taken up by a tweet?
One tweet= not so much. A series of tweets in quick succession= a lot. By the time of my first nap, which was an hour and a half after getting up, I felt like quitting. I kept going at a gradually dwindling pace. By lunchtime I realise don’t I couldn’t continue a this pace so sent out the occasional tweet instead.
And at dinner I stopped. Much like in my “Day in the Life of ME” video diary I made a few years ago, I was too exhausted by dinner to continue. Both records of my day stop when I go to eat.
But hopefully it is still an interesting account of what my day is like with ME/CFS, Lyme Disease, Endometriosis and Fibromyalgia. You can see it below, or click through to the story I made of along the tweets from the day on twitter.
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