May 12 is International ME Awareness Day. I honestly don’t know what to say, after 13 years with this insidious illness. I know I’m a baby – there are ME elders out there who have been sick for decades, trapped in their rooms or beds while the world passes them by.
I’m just so tired. Not a kind of tired any person without ME can imagine. Just bone weary, sick of being so sick, my body won’t respond to the most basic of commands, muscles bones and joints failing me, tired. Brain becoming unresponsive mush, losing words and forgetting who I am and the very concept of existence and time, worse than post concussion syndrome tired.
Tired of seeing my ME pals die and fade away, as research funds are misappropriated for harmful exercise therapy and disappear into the administrative ether. Tired of harmful hacks being given platforms time and time again to direct a non-response to first ME, and now Long COVID, whilst real research is crying out for funding.
Tired of looking in my reflection in the mirror and seeing the life force drain out of me, seeing a person I can no longer recognise. Tired of seeing all the joy eked away in favour of sheer survival against this evil disease.
Tired of seeing this world-scale eugenics experiment never seem to end. Tired of seeing self-proclaimed “allies” and “leftists” abandon all pretence of infection control, in favour of going maskless and acting recklessly. Tired of our lives being worth less than not having a piece of cloth over your mask and staying home when sick. Tired of waiting while elderly and Disabled folks, plus other high risk categories like migrants and low socioeconomic groups, are culled by governments and peoples who consider their lives unworthy of life.
Tired of realising my life is a non-factor to many who think it can’t possibly happen to them, that after 13 years it’s evident no one actually believes the reality of my, and all chronically ill and Disabled folks, existence. Tired of seeing people join the post viral illness club and act shocked when they realise they are now in a different plane of existence to the one on which they previously lived.
I’m so fucking tired.
Chronically Siobhan 