As most of you know, I have M.E. I've had it for 4 years.
I'm so much better today than I was two years ago, when I could only leave the house twice a week for a couple of hours (and even that was sometimes too much) and was on constant pain medication (because I was in constant pain). I could go on, but I won't. I got off lightly, really.
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Stroopwaffle is a tweeter (and person!) from Suffolk in the UK who is bedbound and unable to sit up due to severe ME. And yet, from her bed, she still manages to write poetry.
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Green Words has had ME for 15 years. Take 2 minutes to read this blog entry. It doesn't focus on the technicalities of the illness or list the various symptoms (because you'd be there a while), but it's a little insight into what it feels like.
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Billy Gean is from Staffordshire and blogs about life and her recovery from the illness: still not fully well, but now able to write and work part-time.
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A little while ago, I read a book called The State of Me by Nasim Jafrey. Here's a snippet:
I’m always measuring out my energy behind the scenes, but people don’t see it. They see you at a party and think you’re fine, they don’t see you resting all day to be able to go, and being wrecked all the next day because you went. They don’t see you leaning on walls at bus stops because you can’t stand for more than five minutes. They don’t see how tired your arm gets after beating an egg. They don’t know you almost always have poison in your calves when you wake up. They don’t see you weeping because you’re so tired of it all. Last week, a nun with bulbous eyes called me a lazy girl because I was sitting down on the bus.
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And if you want to understand what it's like to ration out energy like spoons, read The Spoon Theory. It's actually talking about another illness but could be applied to so many chronic illnesses, including M.E.
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Today, I'm trying to do as many ME-related tweets as possible to help #MECFS get to be a trending topic.
If you do want to find out more, here are some useful links:
A Hummingbird's Guide (this site has every M.E. topic covered)
After all of that, I need a lie-down.
Thank you for all this info! It is such a difficult thing for people to understand, it's always useful to hear people's experiences. My mum has had ME for 15 years and people who have known her all this time still struggle to understand her condition. So thanks for the links!
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