Friday, 6 August 2010

What does having M.E feel like?

I get asked "what does M.E feel like?" so many times, (mostly by doctors who are trying to understand how you're feeling), and i usually can't find an answer because M.E is so confusing and it feels different everyday, everyday there's something new to deal with, a brand new symptom or an old one that makes a reappearance.
The only way i can describe it is if you imagine you're climbing up a mountain that's so high you can't even see the top, it's muddy, you're wearing flip flops, you can barely see where you're going because its so foggy, you have a Range Rover strapped to your back and you have to drag it up the mountain. You're already half way up the mountain so its pointless to turn back now, you have to keep going and just hope that there's some sort of salvation at the top.
While you're doing this, you notice that there's an escalator next to you taking people up to the top of the mountain, but you're not allowed on it. While you're desperately trying to drag yourself and the Range Rover up the mountain, the people on the escalator are talking to you saying "but you don't look sick", "you're just tired", "there's nothing wrong with you", "its all in the mind", "why don't you just go for a walk", "why haven't you come to see me recently, don't you love me anymore?", "you're just unfit, maybe you should try some exercise", "you look well". The people on the escalator don't mean to say these things, they're just trying to be kind, trying to be a comfort. But they don't realise that what they see on the outside isn't representative of how you're feeling on the inside.
Okay, that's enough of the analogy. Basically M.E is a constant struggle between the limitations of your body and the hopefulness of your brain.
Now my brain has gone completely blank, so i think I'll end it here. Thanks for reading. :)


  1. That's a really good analogy and I might find myself using it at some point if you don't mind. Usually I say (about the pain in my legs) it feels as if I've just done a cross-country run yet I know that I haven't really done anything other than wake up so the pain doesn't make sense which confuses everything else in my system.

  2. Thank you Bethany. Of course i don't mind. Describing M.E is so difficult, i don't think anyone could understand how it feels, unless they have it. When i try to describe it people look at me like i've suddenly sprouted another head! :D