Eventually I sob out to a few friends on Voxer: Who am I? What am I doing with my life? – and it feels good to have released something. My friend Sarah replies, and says that in lots of cultures around the world, the women, particularly the mothers, are the archivists. They record the memories, take the photos, write the stories.
Tag Archives | myalgic encephalomyelitis
All the same, this is a time for celebration: ME is in the news in the UK, and it is due to a study which seems to indicate ‘robust evidence’ that ME is a physical not ‘functional’ illness. I dare not even say it, but it could well be that greatly-elusive biomarker the ME world has been waiting for. This could be a huge breakthrough for the future of research and treatment for ME.
She is my hero, because, like Job, she endures. We admire those who climb mountains and endure freezing temperatures, and history applauds them. But where are the records and awards for those who climb mountains of pain and isolation, day after day, for decades?
My interview for BBC Radio 4 on the topic of being ‘in the world, but not of the world’, presented by John McCarthy
I have been interviewed as part of a half-hour program presented by John McCarthy (yes, the John McCarthy who was a journalist in the Lebanon hostage crisis) on being ‘In the world, but not of the world’.
I cried because I love blogging, and it’s such a lifeline – and I cried because at the same time a part of my soul leapt and said, ‘yes, I need rest’
I find it hard to know when it’s ‘resting’ and when it’s ‘resistance’.
I find it hard to know when to know if I’m feeling lethargic because the demons are whispering that I have nothing to share with the world, or if I’m feeing lethargic because my body is whispering that it needs longer to recover.
I don’t know where to start, so perhaps I shall say this: every single attempt to get the NHS to treat me for my M.E. feels like a battle.