Our lives are so restricted. Im sorry if that’s doom and gloom, but they are. When you have M.E you have to keep yourself on a leash so as not to over do it on the better days. You can’t live a carefree laid back life where you through caution to the wind. As the clinic reminded us, you have M.E even on your better days.
You will always suffer to some degree for having fun and seeing your friends and pretending to be normal. Your body will kick and scream afterwards. You start to wonder whether doing anything is worth the pain and suffering…payback is more horrendous than the day to day M.E so you become tempted to hide away because you already have an unimaginable amount of awfulness to deal with. But I know I mustn’t do that. In the long run, it will only exacerbate the other lovely factors that can come with M.E, namely depression and anxiety. I have not got depression (yet) but I was diagnosed with anxiety. I am now able to combat that.
You have to live with the knowledge that things could suddenly fall apart again at any moment. It’s like living with a time bomb. Just because you’ve managed a day out of bed or managed to see friends for a couple of hours doesn’t mean that you’re better. I wish!
I try to enjoy the better days while they last, but I admit to living in fear of relapses and setbacks. If you’ve experienced one then you’ll understand why.
We can’t live each day as if it were our last. Life with M.E doesn’t work like that at all. Not in the usual sense anyway. I try to live my days happily and well, but within my means. I suppose I give each day 100% but my 100% might be the same as a healthy persons 10%, or even less.
Today I’m feeling a little lonely and I’m also feeling at a bit of a loose end. I don’t usually get bored (because I feel too poorly) but today I’m a bit fed up. Today the fatigue is my worst symptom, but because the brain fog is lesser, I am more aware of my loneliness and boredom. I can’t afford to anything more than my baseline targets though, not if I want to give myself the best chance of enjoying Christmas. So I can’t go to the supermarket with my mum, or see if any of my friends are free, or pop round to see my sister…I just have to ‘be’. Even on my better days the M.E is still winning. I have to sit back and watch instead of joining in.
Alas, I’m well enough to cope with the TV today though so it’s been a TV day…every cloud.