I was never the quiet girl in the corner of the room, but I am now. If you were to invite me to a social gathering (pre-illness) I'd have been there like a shot, with a drink in my hand (usually because I was such a slow drinker it took me all night to drink it!) having a dance or a good old gab and a giggle. I especially loved an impromptu night out, or one that started at lunchtime and unexpectedly carried on until the early hours. And if it involved dancing to cheesy music then even better!
But now things are very different. I cannot remember the last time I made it to a bar or club. I only make it out of the house about once a week, usually to medical appointments or short trips with friends, and I always have to have someone with me. When I do make it out to social events, I am either in my wheelchair or plonked in a chair, often in the corner. Sometimes by the time I get there I am too tired to talk very much, and I find making conversation with strangers very draining.
You'd be surprised how exhausting it is to form facial expressions too- when I'm really tired I can't make a lot of facial expressions and end up looking 'glaikit'... a good Scots word for looking vacant. I often tell my family 'I'm not sad, I just don't have enough energy for facial expressions right now'.
Then there is the problem of the music. I love music, I really do. I have always listened to music, played instruments and danced around the kitchen but I can only listen to fairly calm music now and only at a very low volume. If there's music playing I just don't have the energy to speak over the top of it, and if I manage to it sometimes makes my throat scratchy and sore (and recently has given me chest pains like a chest infection).
And I am very sensitive to light. People think my sensitivity to light and loud noises is a dislike thing, or some sort of grumpiness. But being exposed to bright light and noise can cause real and painful physical sensations in my body which are nothing to do with preferences.
My friends are brilliant with all of this, but I often wonder what people who didn't know me 'Pre-M.E' must think of me. Do they think I'm quiet and shy? Or fussy? A diva? Or just plain weird? Am I the girl in the corner?
I'm still the same girl that I always was.... I just have many new limitations now. I suppose you should never judge a book by it's cover.