When I was little going to sleep was this magical escape for me, as I was off to dreamland where I could slay dragons, fly on the back of the most beautiful bird and basically star in my very own story.
Nowadays it’s a battle and prayer that I get some sleep. I hope that I get more than a couple of hrs. I wake in pain, hunting in the dark for my phone to see if it’s time for me to have some more medication. Often it’s not and I lay alone as my body deals with muscle spasms that hurt so badly tears escape but I keep holding on until they calm down on their own or until that magical liquid or pills puts that ‘dragon’ back to sleep.
If it’s not pain that catapults me out of the warmth of sleep it’s my other nemesary let’s call him ‘sickness.’ I reach for my grey plastic bucket who is used to this routine and empty the remains of yesterday’s food that I thought I’d managed to keep. It hurts and again tears sometimes escape because I’m alone and I just want to sleep.
My only bit of comfort is sucking on a ginger sweet, my best friend buys them for me as they help to soothe an upset stomach for a moment at least. When the purging subsides I lay my head on the pillow and wait patiently for sleep to whisk me away, this can take minutes but most times hours. Wishing it was different is pointless, being thankful it’s not worse is the only comfort I can take from these resilient endless episodes.
What’s so amazing about the human body is its ability to forget, I often wonder why is this happening then I remember it’s because I am ill, ME is a part of my life has been for over 18years. It’s not always this bad, sometimes worse but thankfully there are blissful times too.
The great thing about my life is my faith, because of it I have hope that this isn’t how it will always be and one day I will get to enjoy the magic of sleep without the fear of pain, until then I will continue to fight, I may loose many battles but never the war.
ME Awareness Month