So I’ve now been blogging on and off for ten whole years. I started my writing on my Facebook page and continued it on my website, but I’ve been writing for pretty much the entirety of my chronic illness journey (nearly 16 years now!), I just spent a lot of that time writing in my head because I was too unwell to do it physically.
I suddenly thought that whilst I’ve blogged about my life and about subjects that are close to my heart, I’ve never sat down and written about writing and why it’s one of the most challenging things I’ve ever done with a chronic illness.
You see, I’ve always wanted to write and have always loved doing it but add into the mix the constant fluctuations of a chronic illness like M.E. and it becomes a whole new kettle of fish. I write for the love of writing, I write for the joy and the fact that deep inside me I have a yearning to do it.
Writing with a chronic illness is hard. When I first started writing again whilst bed bound, I only had ten minutes of energy pockets to use. I lay there in silence fixated over every word, because every sentence I used to tell my story mattered.
Even now, years later, my writing is severely affected by my condition. Here is a snippet into a writing “day” for me:
After spending hours living the story over in my head, I have to try and put it down on paper, well an iPad or my laptop in my case, as actually writing with a pen uses too much energy for me.
I know exactly which words I want to write, I can see them in my mind on the imaginary notebook I’ve created. But my chronic illness means I can’t just write because the M.E. Monster doesn’t allow that kind of fun.
Firstly I have to lay down with a pillow hugging my side to try and take the strain of my back as it tries to support me. I have to have a heat pad on my legs to try and prevent myself from getting cold because if that happens, my writing session is over before it has begun.
Then I can get ready to write. I have to turn my brain on and start typing quickly before I forget what I’m trying to say. I can write a paragraph and the brain fog circulates around my mind, making it numb and painful. I know the words that I need to write because I’ve lived the story over and over again in my mind, I know it more than I know what’s happened to myself for God’s sake.
So I start to type again but it’s almost as though my hands have forgotten how to move. The connection between my brain, my keyboard and mind has been temporarily lost, as if it is faulty. I know exactly what I want to say, but the words don’t seem to be making sense.
I try playing some music because that always helps me to get into the mood of a scene I’m trying to write. I play the same song on repeat and lay there quietly, allowing the emotion of it to flood me. I’ve listened to the same track whilst I’ve rested because I know that as soon as it plays, I’m transported into a different world which is far more exciting than my own mundane, mainly house bound situation.
I’ve been writing for an hour already and I’ve only managed to write a couple of paragraphs. Suddenly my stomach is starting to growl angrily and I have to stop for the umpteenth time. I have to quickly eat some food and take some medication to stop myself being sick because it’s a slippery slope down when sickness takes over.
I have to slowly drink a bit of fluid throughout the next half an hour. It has to be a warm drink because otherwise that makes me sick too and I need something other than drugs to ease the pain in my abdomen. Then another pair of socks on top of the ones I have on because if my feet get cold, the nerve pain takes control.
I type for a bit and actually feel like I’m making some progress in my one-page-at-a-time fiasco. But then I can feel the M.E. Monster taking control of the situation again. The exhaustion seeps through my body, taking down limb at a time. I know as soon as it reaches my head, my hands will seize, I will struggle to take a deep breath as the monster tries to make my body feel like cement that is going hard. It’ll only take moments for it to squeeze the life out of me, moments. But I need to write down one last part of the story, I need to just end on the bit I needed to finish, otherwise I’ll lose my place and forget what I was doing or where I got to.
The monster cackles and I know all is lost, I know there is absolutely no chance of me being able to come to the surface. So I allow myself to sink, back into the unknown murky lands of the monster. But at least I finished a chapter today.
That is just one day in the long journey of writing as a chronically ill writer. Some days it can be better, some days it can be worse but still I try to do it because I want to create, I want to tell my story and the many others that are whirring around my brain.
That’s also why it’s so important to support chronically ill creators because it often takes far more than just writing to achieve our dreams. Read our books, read our blogs and share them far and wide.