I’ve lost track of what day of the week we’re on, what month or season. I’m dripping in sweat, it feels like Summer, but then I’m shivering, so is it Winter? I realise its still daytime from the stream of light peaking through sides of the blinds. The beauty of a sunrise or sunset taken away by the burning in my eyes. The birds singing outside that sounds like nails on a chalkboard. Every car driving past my window, the mumbling through my floorboards of my family watching TV, the postman at the door, the gardener mowing the lawn, all irritating me like an itch that you just can’t scratch.
My chest feels so heavy that I can’t lift it off the mattress, my shoulders pinned down by the invisible weights. My heads pounding and burning like any other young adult would after a long weekend, only mines not self inflicted by over priced cocktails and 99p shots. I lay their in pain from my toes to the top of my head, my legs restless, unable to find a comfortable position even in my cloud like bed. I get the energy to stand up, unsteady on my feet, my eyes cut to black but they’re not closed, I finally come round, holding myself up against the wall, I’m able to leave my room and walk to the end of the hall.
The only normality I have every day is making sure I take a shower, it’s a promise I made to myself as my illness got worse. I know I won’t sleep until I’ve washed off last nights hot and cold sweats. I’ll sit in the shower conjuring up the energy to lift my body off the ground, just the thought of having to get dressed drains every last drop of energy I have.
I lay on my bed wrapped in a wet towel staring at my four large wardrobes knowing I won’t be putting on any of the beautiful clothes I own to go out. I’ll try pass the time by finally checking my phone and realise its a Saturday. I’ll check Facebook, Twitter, Instagram and Snapchat, scrolling through my feeds, seeing everyone from school, my friends and other people my age getting ready to go out, wearing their beautiful dresses like the ones I can see hanging next to me, gathering dust. I’ll click on a few profiles, I’m not going to be moving from here anytime soon, everyones married, engaged, with kids or one on the way, new jobs, degrees or travelling the world. I’ve just about given up on all that.
On a good day I'll make plans, get all excited to go out. I’ll apply my make-up, try style my hair and put one something that doesn't resemble a pair of PJ’s that I’ve been stuck in for days. I know my family are happy to see me out, they know whats under my mask of make up and fake smiles. I’ll hope if I bump into anyone that I can go a conversation without them saying ‘you look better’, ‘you must be doing well’, ‘you’ll be fine soon’ or ‘you don’t look ill’.
I’ve popped pill after pill, painkillers, sleeping tablets, antidepressants. I’ve tried everything to take the edge off the pain with no luck and left with no hope. Everyone suddenly becomes a specialist in my illnesses even though they can’t even spell M.E. They like to tell me how I need to exercise every day even though the smallest bit of exercise drains me of any energy, adds to the already excruciating pain and leaves me stuck in my bed for weeks where I only leave to use the bathroom.
I’ll go to bed like a ‘normal’ person, the rest of my family asleep and the house dark, quiet with just the slight sound of snoring. I’ll lay in my bed just staring up, hoping I get a decent nights sleep and can wake up to a ‘good day’ tomorrow or maybe a beam from my ceiling will fall and knock me into a deep sleep for a couple of hours. After a while of gritting my teeth threw the pain and frustration of not being able to sleep I’ll try to distract myself.
I’ll try watch something on Netflix, read a book, list out all my thoughts all just to keep me sane, I’ll finally fall asleep as the suns waking up, mid box-set, my pillows cluttering the floor, after screaming into them and then thrown out of anger.
It’ll all start again when I eventually wake up.