PAIN IN SEVERE/ VERY SEVERE ME


Is like :

Being assaulted physically inside and outside in multiple ways all at the same time with no relief or escape.
Having the blankest emptiest space in your head where everything beautiful, colourful, creative, every image, every comprehension , every hope, dream, expectation and every possibility is extinguished, except for the dark blank swirling pressure and piercing pain that tortures you.
Having a knife twisted into the centre of your head whilst at the same time clashing pots and pans as loud as possible in your ears so that it jangles round your head for hours and hours and hours after every single noise has gone away, whilst having a massive heavy, hammer repeatedly hit against your head continuously so that you cannot think and you cannot escape and you cannot stop it and you cannot bear it but you have to endure it, with no alleviation or protection from it and no prediction of when it will increase and no knowledge if whether it will stop, going on seemingly endlessly.
Not being able to explain, not being able to articulate, not being able to comprehend, not being able to convey, speak, describe, identify the horror of your reality inside and out., the clashing, clanging crashing reality of central nervous system dysfunction causing utterly destructive mayhem in your head and body.
Burning with pain on the inside so that even your bones feel on fire and your skin is screaming at you as crawling irritating nothingness reverberates around your body and all over your itching, burning, skin , so that every contact feels like it will crush you and the pressure of contact is so unbearable that you want to scream forever with the pain of it and the indescribable nature of it, where even the air around you hurts to be invaded and feels as if you have been banged into even if there is no physical contact at all.
Your head so intensely agonised that you think you will surely die from the extreme indescribable throbbing, burning, piercing, vastness of agony such that even though you know you cannot survive or bear any physical contact, yet still you want someone to come and take the pain away, but there is no one to help you and there is nothing to alleviate it and it goes on and on and on and on for hours and days and weeks and even months, year in, year out, yet every second feels like it will surely be your last, because there is no pain greater possible.
Light so bright it scorches your eyes and remains burning you even with your eyelids shut imprinted in your head for hours of piercing, throbbing, expanding and contracting agony.
Paralysis that totally encompasses you and stops every movement, every thought. Paralysis defined by extreme burning pain.
Paralysis that numbs the brain and jellies the limbs so that they feel like molten liquid with excruciating pins and needles jabbing at your arms, your hands, your feet and cold cold body parts so frozen that you think that parts of you have surely died and will never come to life again.
Your face disappearing from your proprioceptive awareness, as well as your arm and your leg. Leaving you feeling as if you only half a face and maybe quarter of a brain, your feet have gone completely.
Breathing so thin you do not know how you will even make the next breath.
Body so paper thin it feels as if you are made from antique paper that will simply crumble away to dust.
The environment once benign, happy, engaging, interesting, comprehensible, participatory, becoming a nightmare hostile place where where :
a/. Every single noise drills inside your brain and diminishes you to a raging tormented screaming alien in your own home
b/.Everyday noise is not just unwelcome or unpleasant or even just painful or awful, but dangerous and damaging and life threatening potentially
c/. Ordinary things to be dealt with, questions to be answered, bills to be paid, people to talk to, even for a few polite moments, documents to file, letters to write, phone calls to make, food to prepare, meals to eat, water to drink, hair to be washed, teeth to be cleaned, pills to be taken, doors to be answered, friends to be seen, social engagements unkept for decades, are completely absolutely impossible to do, yet invisible to anyone as to why.
d/. Nausea is so violent that you do not think you will be able to breathe with the length of spasm and constriction in your throat.
e/.Pins and needles at their most extreme are like loud, resounding, metal, clanging coils that dementedly vibrate and spring up and down your limbs as if the skin and bones and muscle have changed their very constitution and you are no longer human.
f/.The world is dark and the view is through a tunnel and you black out if you move or lean over and dizziness assault you out of nowhere, knocking you backwards with the force of elephants stampeding towards you.
g/.Every single moment is a moment of indescribable torment and confusion and intolerable pain and indescribable sensations, that rage freely around and inside you, through your skin, your brain, your veins, your muscles, your bones, your blood, your cells, everywhere, on every level, leaving you collapsing and helpless to function.
h/. You are helpless to get the help you need.
i/. You are helpless to explain how to help you.
j/.You are helpless to comprehend communication that might help you.
k/. You are helpless to be given help and helpless to understand that the person trying to help you is not being clumsy or careless or not trying hard enough, but that you simply cannot bear anyone near you and you cannot see clearly and even if they were the quietest, most gently, loving, kind, considerate, aware person in the whole world, they would still be hurting you because your body is so unbelievably, implausibly, unimaginably, massively, inexplicably hypersensitive and violated by every normal thing, interaction, presence, person, even kindness to you.
Adapted from : "Severe ME, featuring Justice For Karina Hansen"
http://www.stonebird.co.uk/severemebook/severeme.html


Popular posts from this blog

36 Issues worth pointing out IF A CLINICIAN REFUSES TO “BELIEVE IN ME” OR WRONGLY CONSIDERS IT TO BE A PSYCHIATRIC CONDITION

NICE : a Reply Regarding my letter to Sir Andrew Dillon

55 REASONS why NICE must recommend a home visiting, biomedical service, for people with Severe Myalgic Encephalomyelitis