Sunday, May 12, 2024

Are you aware as I am?


 Today is M.E. awareness day. And I’m angry, because I am far too aware. 

I am aware when I think about everything I have missed out on. 


I am aware when others show a distinct lack of awareness and I am asked “what is ME, is that tiredness?” I am aware when that person is a doctor in charge of my medical care, when they are unaware. 


I am aware when someone tells me how well I look when they visit me in a dimly lit room where I lay in bed. And after, when the PEM hits and my body breaks I am aware. 


I am aware when my family have to watch me suffer and I see their pain at not being able to fix me 


I am aware in my own pain and suffering, as I endure day upon day. 


I am aware when I watch my friends slip away further and further into the depths of ME. 


I am aware when I remember there is no treatment or cure. When I realise that despite that there’s almost no funding for research. 


I am aware as we beg for better. 


I am aware when I twitter storm and I recount the abusive healthcare treatment I have received in the attempt to stop yet more people going through it. 


I am aware when I feel like I haven’t done enough, because as a sick person I can’t. As a sick community we do our best but can’t. We are aware. 


I am aware when as a community we have to try reassure someone that it’ll get better, that it’s worth staying, even when we’re unsure ourselves. 


I am aware when a patient dies, are community cries and mourns. 


And I am aware that I am screaming into a void. I am screaming my awareness and it’s only heard by others also aware. 


I am aware. All too aware. Are you? 

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