I’ve been ill with ME for over fifteen years now – housebound and largely bedbound. One of the main things that has kept me going is my imagination.
The first year of ME, I was too ill to see past the end of my nose. I wasn’t aware of anything other than the struggle inside my body. Then I started to see a consultant who helped me put in place a pacing routine, alternating rest and tiny activity (meals, getting dressed, five minutes on the internet etc.)
Slowly, my symptoms eased just a little and I became a bit more aware of the world around me. And as I lay there in bed one day, a children’s story flew into my head out of the blue and demanded to be written.
Of course, I wasn’t well enough. For many years, I wasn’t. And then I began to be able to write a few words at a time, then five minutes a day three times a week, and then a bit more and a bit more. I still have severe ME, can still only write a little on good days and it’s been so frustrating not to write faster. But this story wouldn’t leave me alone, and finally, fourteen years after it crash-landed in my brain (just as the witch crash-lands into my main character’s attic), it’s arrived in the world as a published book.
One of the hardest things about having severe ME is that you lose all sense of self-identity. Prior to falling ill, most of us lived full, capable lives. Then we fall ill, unable to work, isolated at home and have little to show for our lives. For the first time in fifteen years, I am no longer just the illness, I am (dare I say it) an author.
I feel extremely lucky that my level of ME, whilst still being severe and extremely debilitating, has allowed me to have this achievement. I hope others with severe ME also get to the stage where they can be something other than just the illness. On bad days, I still can’t do anything, my symptoms are unbearable and everything feels hopeless but now I have my own book on the shelf next to my bed. A book which features a young carer whose mum has severe ME. A book that I hope will raise awareness. A book which will donate ten percent of profits to the ME Association.