Thats all i really have to say to to right now. Just go, give me a break, I’m tired of feeling like this, i really am,
I can’t stay warm, i can’t remember anything, i can’t hold any conversations, and i can’t hear out of my left ear! going to the toilet feels like climbing a mountain, i feel awful, and i just want a break, a breather.
M.E to be honest, I think you and I should break up.
I’m getting used to the words incurable, painful, and the sentence, “Its hard to diagnose and difficult to treat.”
You started off in my life as bouts of severe fevers, headaches, swollen glands, and many missed days of school. I was four. When I started secondary school the stress of the change encouraged you to grow, you became all the more vicious. i missed so much school and then that same year my great grandma grew sick, the worry, stress and grief was something you fed off of, you stormed my body like an army, I cried from grief and from pain, i could barely move, days, weeks, months off of school, so they started to call in the social workers, dragging me out of class to meet this smarmy women who was determined to convince me i was fine. The odd day I made it there my teachers gave me disapproving stares, my friends were used to me not being there, The only place i wanted to be was at home.
When asked the question, “If you could go back ten years knowing all you know now, would you?” I think of all the things i’ve had power to change, the things I would change about myself now, and answer no. because all the time machine’s in the world, all the hours taken back, recounted, like miles in reverse, would not change you, M.E, you were not a mistake i made as a child, like falling off the climbing frame, you were a fate forced upon me with inevitability, ten years back in in time would not change you, only lengthen you, that piece of string you are would grow inexplicably longer.
Shushhh. ShUT UP. I kind of wish you were a separate entity I could make a deal with, compromise with, or ideally leave far, far behind, ditch you on the side of the road or something and drive off with glee. But you’re like a internal rumpelstiltskin, you have a price for everything, the small print with you is so tiny and elaborate I never quite know what I’m signing away.
Of course we have found some things that have helped.
I am one of the lucky ones, as i have a family who put energy and hope to curing you, The kind i cannot muster, when I give up I have them. My mum, aunt, grandparents, even my quiet dad who have no idea what you are.
I am renownedly sceptical of trying new fads, my cynicism roots from my need to not get hopes up. but i am glad i have them to hope for me. because I have resigned myself to a lifetime with you, I know for fact Dystonia doesn’t go away, and I’ve been with you for so long it’s its hard to believe you’ll ever let me go. This doesn’t mean I stop trying, it just means I stopped expected they’ll be a time in my future without you.
There is not a lot out there to help me deal with you. No magic pill that kills you, no soothing remedy, or definite action. You are not a simple illness and therefore there is no simple cure. But there are methods we learn, tools we are given to become stronger.