Severe ME day

August 8th. Severe ME day. I don’t really have much to say. I have spent today in bed. I suppose some may think I’m severely affected. But I don’t consider myself so. I have seen glimpses of Severe, and it’s not me. Don’t get me wrong, I am very sick, sicker than most can conceive, but I have too much life in my life. I can write, speak, cuddle, tweet … Severe ME steals everything, but it doesn’t even have the decency to leave you with nothing, instead it fills you up with unending and horrific suffering that defies description and lasts decades.

Today I am thinking of Alem. I am thinking of Merryn’s family. Of Julia’s. I am thinking of Kjersti and of Karina. Of Whitney. I am thinking of the thousands who’s names and faces I don’t know who are alone and suffering, and the thousands more who love them and must stand helplessly by. My heart is full of them. I want to go to each of them and whisper that they are not forgotten, that they are loved, that they matter, that we’re doing everything we can, that we’re coming back for them.

Last year I was afraid, almost too afraid to talk about it. I’m not just afraid anymore. My fear has made me determined. My companions have given me hope. We are coming back for you.

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