Sometimes if I pay attention to the touch, pressure, constant itching discomfort of the heart monitor strap around my chest, I want to rip it off, like the rising panic of getting your arms and head stuck in a piece of clothing (or maybe that’s just me, on both counts… and maybe on all counts which follow below, too).
When my pumpkin isn’t cooked properly, my whole being, living in my skin is so uncomfortable I know what ADHD must feel like, I want to be squeezed, I need to kick my legs and squirm and wriggle and bite the permeating low level pain away. But I need to stay still and calm.
When my carers don’t understand this illness despite 20 pages of explanations and instructions, like I am an alien, I slow burn implode. I want to appreciate and be grateful for help and I try to be gentle but the end result of wellmeaning but misguided attempts is I don’t want to continue living this life in this body.
When I am sleepy or stressed and people make short sharp noises, shutting a door, opening a packet, it feels like my skin is being zapped allover, electrocuted down my spine to my finger tips. And it comes unpredictably and I can’t control it and I can’t meet their expectations.
When people chat at me, I feel invisible, I cannot comprehend what they are thinking to act like that, the only explanation is that they cannot comprehend or even see me, or that they do not care for me at all, I feel like I am enduring well meaning—or habitual—torture.
[i read it written of a dream where all the words ever spoken floated above the dreamers head for her to peruse and she surmised that we should be mindful and not speak so casually for it is all written; I wish this was taken to heart and I was spoken to only as strictly necessary]
When I push my limits to complete a task, afterwards my brain goes silent and flatline, once the ringing stops; I stare at the wall and think and feel nothing but the heaviness, like I am dead but I don’t even mind, apart from the dull ache; at least I am still and quiet. Too tired even for discomfort; At least it has stopped.
When mosquitoes buzz in my room, the carer kills three and I slap two and then she leaves and I hear more and I watch them across the ceiling, back and forth… I feel the restriction then. rage and frustration of twenty one and a half months restriction unable to stand or sit or move or let go without punishment.
I throw a cushion at them, overexerting my shoulder muscles and spilling a jar of coconut oil onto the bed. The muscles still spasm an hour later as I lay on a towel on the oil and breathe in the smell of salicylates; I start to cry at these impossible parameters and momentarily despair, the sobs starts to choke, tears flow every which way across my face and it takes the edge off but my heart rate monitor dings louder and louder and I have to calm down; not allowed release.
My eyes become conjunctival, they sting and I painstakingly pull away discharge for days, if I forget and rub them it swells into cysts and swollen eye lids to apply hot compresses to.
I feel lonely and bored and frustrated. I feel caged and trapped and suffocated.
I feel suffocated by the dependence of being alone while needing help. I feel suffocated by strangers who don’t know me, don’t understand M.E. and don’t really listen… endlessly in my space [never alone, alone all the time]. I feel suffocated by the guilt that they try and understand and accomodate but this illness needs SO MUCH and they inevitably fail and hurt me, with scents and food and disruptions and missed messages. I feel suffocated by the requirements of my body and the demands of the world. I feel crushed by the grief of the babies I gave up and maybe will never have… and by the weight of treatment decisions, rocks and hard places with little guidance and inadequate tangible support; no safety net to catch me if I err.
I’m navigating a dark hell hole, at a loss myself except I’ve been here a while. I am not the lord of this terrain… yet I am required to shepherd those to whom it is invisible, those who walk in the light of functionality and family and social time and sex and baths and dancing and sunshine, but visit me here, in an attempt to bring solace or food or water or to take the shit away.
My survival and my escape depends on forging an understanding. How do you show someone what it’s like to live without living, in suspended animation, where each step forward is measured not by how much you gave and received and shared and experienced, but by how much you managed to be still and silent and alone and nothing, even to yourself? And where every misstep is mercilessly punished with the loss of hours, days, weeks of your life, and new depths of restriction, pain, and alienation. How can anyone possibly respect that enough?
To an extent, I don’t want to show them (and most of the time I don’t want to see it myself). The youth and health and beauty unrecognised, so innocent, contrasted against this heart-breaking loss and fragility. Depths of suffering too heavy for those who walk among the living.
And yet they see it, they must, and that takes me by surprise too, but I tell them it’s okay and not to worry and thank you for your help and please just text me instead of talking and don’t worry about the diarrhoea from the pumpkin.
While the days tick, tick, tick away.