The Outside vs The Inside

Updated: Feb 16, 2019

So as you know I’ve created this blog to raise awareness of what M.E feels like, because I can’t raise awareness of what it looks like. It looks like anyone, everyone. I look no different to anyone else on the outside, the inside is where the problems lie. I went to an engagement party recently (go me!) and it occurred to me that none of these 100+ people know me from Adam (I was a plus 1). I seem fine to them, a bit quiet maybe. Maybe they wondered why I was sitting out the last dance when everyone got up and went nuts. They all looked like they were having a good time, I enjoyed watching them from the side lines. I was happy to be there.

Sometimes I like that I can hide M.E. Sometimes it’s nice to slap on some makeup, wear something other than a baggy t-shirt as pyjamas, and fool people. Meet people you’ve never met before and act normal for once (or try to at least). But sometimes that makes things harder. Because how do you explain to a bunch of people that think you’re an Average Joe that you’ve got to go home now because the lights are too bright, everything smells funny and your legs can’t support the weight of your body anymore. How do you tell someone you’ve been chatting to all night that you can’t talk to them anymore because your brain has gone fuzzy and trying to communicate has become nothing but a confusing irritation. Not exactly polite is it? You might tell me it would be easier to just be honest with people. I would disagree. To be honest with others you need to be honest with yourself first, and there’s nothing easy about that. That takes real guts that does. I’m working on it.

I’m proud of myself for going, I worked up to it for weeks, and I was terrified. I happily took the payback for it in the form of extreme fatigue and pain, because do you know what, it was worth it. A few days later I was back in bed by 8pm (after sleeping almost all day) and I had to put earphones in to cancel out the sound of my parents eating dinner. They were one floor down, and a few rooms across, and yet the sound of their cutlery meeting the plate was making me clench my teeth. That’s payback for me, it’s not just being a bit tired. It’s being far too acutely aware of every tiny part of life, to the point that it’s painful. I often say I feel like a lump, but never more so than after overdoing it. Medically they call it “Post exertional malaise” – I call it a pain in the arse.

I might not have been my usual self at that party, I might have loved to act like everyone else that night, but I was there. That’s good enough for me. I made a promise to myself that I wouldn’t leave early. Perhaps that was a bit silly, perhaps I should have left when it started to get overwhelming. But the fact is I just didn’t want to.

That’s the thing with M.E – when do you say “I’ll be there”? When is it time to leave? When do you take the risk? I could set my recovery back days, weeks, months or even years by overdoing things one time too many. One stupid time. What’s worth it? What isn’t? Where do you draw the line? It’s exhausting. Every time I go anywhere it’s like a calculated, planned out military operation. What’s easier – push your body past its limit to retain some sanity, or stay at home knowing your body will thank you for it but your mind will not. Trying to strike that daily balance it like living your life on a high wire. And to be perfectly honest with you I’d like to get off, feel solid ground under my feet – without fear of falling. I think that’d be quite nice.

#spoonie #chronicillness #mecfs #engagement #chronicpain #copingmechanism