Know what sucks? How every second you are awake it's a fight... Like seriously! CFS/ME needs more awareness, it's such a shitty illness and I have no idea how I manage to fight it, but I do, and I'm still here, when all I want to do is give up.
I went to the CFS clinic again last week, and you know what got said? The usual shit 'don't nap'. It really pisses me off. I know my body more than they know this illness, and I know that I need to nap because it lessens my symptoms... When I don't nap, the more ill I am. When I nap it doesn't exactly help, I am still so fucking exhausted and in immense pain but it just makes ot so I don't have much more symptoms.
I'm failing badly at this no napping, I haven't fallen asleep sat up since I was a kid. But its becoming more... It's a joke!
What would be perfect is if these 'specialists' and 'doctors' in CFS/ME would be people who also had the illness... I mean how perfect that would be. Well not perfrct. But they'd understand. They wouldn't have me to push myself to not nap, or push myself what my body cannot do...
I wish I was rich, I wouldn't have a problem with being ill, I coild be comfortable, but sadly I'm not and every day is a fight, and quite frankly I'm fed up of it.