13 MILLION, 148 THOUSAND 730 MINUTES OF MY PRECIOUS LIFE

25 years of constant ongoing hellish pain that burns in the centre of your being

25 years of a never ending cycle of total paralysis, then partial paralysis, then total paralysis, again and again,for hours, days, years on end, endlessly streaming into infinity

25 years of numb face and limbs, feeling swollen, disconnected, disappeared as proprioception dissipates and I don’t know where my head, my face, my arm, my leg, begins or ends, where heat is cold and ice burns and nothing is felt properly or accurately

25 years of needing help to get my basic needs met, help that is still painful to receive, impossibly hard to access, desperately wanted, yet physically unbearable, despite gentleness, compassion and understanding

25 years of empty jelly muscles where strength and ability should exist

25 years of continuous head pain with intense agony beyond description on contact, and with any pressure whatsoever, so that sleep or rest or support are agony or impossible, no comfortable chair, no comfortable pillow, no comfort whatsoever

25 years of crawling, screaming, itching, stabbing muscle pain, breaking my muscles up, incapacitating me in its constancy

25 years of shaking writhing limbs, unexplained, exhausting, uncomfortable, uncontrollable and demolishing, head shaking, aching, nodding, hurting, gut tremor, diaphragm spasming, whole body shaking,twisting, contorting to its own rhythm

25 years of difficulties tolerating food, not knowing what to eat, triggering choking, paralysing, copious saliva and mucous, stomach swelling, struggling to breathe, losing weight, losing vitamins, being shut out from the sheer enjoyment of eating and the love of food, not knowing if it will eventually kill me

25 years of shifted sleep, sleeping late, awake till late, out of sync with everyone and everything

25 years of crushing, paralysing, tormenting, pain-filled tortuous noise sensitivity, creating the need for total isolation and separation from normality

25 years of throbbing, burning, itching, hurting eyes, with agonised hypersensitivity to light, tunnel vision, double vision, staring or simply shut eyes, unable to open despite my will or command

25 years of movement sensitivity, confusing, disturbing, hurting, deteriorating, paralysing with the slightest wrong movement in the room, even using the wheelchair becomes out of bounds

25 years of chemical sensitivity, rashes, headaches, nausea, swallowing difficulty triggered by chemicals and perfumes, battered and harmed by every passing smell

25 years of mind blanking horrendous cognitive dysfunction, words disappear, memory is lost, letters dance about, images are gone, blank, empty nothing exists, where colour and streams of beautiful, insightful, consciousness should flow

25 years of endless weakness, inability to hold things, inability to write things, inability to feed myself, inability to move about, inability to communicate, inability to stand or walk or run or swim or ride or balance, falling continually, tripping, bumping into things, dropping things, inability to do what you want when you want or at all

25 years of being shut off from the world and shut out from proper healthcare, proper support, proper recognition, proper provision

25 years of misinterpretation, misrepresentation, misinformation constantly blocking and harming progress

25 years of no proper treatment or understanding

25 years of lack of adequate investigation

25 years of unbelievable neglect of a severely disabling neurological disease

That is 788 million, 923 thousand,800 seconds of my life that has been spent in indescribable agony and profound tortured disability.

13 million, 148 thousand 730 minutes of my precious life, immersed in horrendous indescribable, unfathomable experience, that sadly goes unseen, unrecognised, unimagined, neglected and denied, yet is totally unbearable and unrelieved, unrelenting, unbelievably ignored, yet still I have to bear it and live within it

Just as horrendous the day it began, it gets no easier to bear, 25 years on, I am still waitingfor help that does not come