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What Very Severe ME is like: Stonebird

Countrygirl

Senior Member
Messages
5,429
Location
UK
Greg has just posted this, and I thought it is worth sharing as it may help some who know little about ME, realise just how unpleasant it is for so very many.

Stonebird

VERY SEVERE ME IS LIKE :

Utter and Absolute Chaos.

Falling endlessly off a cliff into nothing.

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 understanding, 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.

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 SURELY FEELS LIKE IT WILL BE YOUR LAST, BECAUSE THERE IS NO GREATER PAIN 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 move-
ment, 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 body parts so frozen that you think that parts of you have surely died and will never come to life again.

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, has become a nightmare hostile place where nothing is reachable, every single thing is out of reach, no matter how near it actually is, even if it is right by you, so close that in theory you should be able to pick it up and hold it, without even stretching, where every single noise drills inside your brain and diminishes you to a raging tormented screaming alien in your own home, where everyday noise is not just unwelcome or unpleasant or even just painful or awful, but dangerous and damaging and life threatening potentially, where 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.

Where 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.

Where 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.

Where 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.

Where every single moment is a moment of indescribable tor-
ment 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, helpless to get the help you need, helpless to explain how to help you, helpless to comprehend communication that might help you, 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, per-
son, even kindness to you.

From "Severe ME featuring Justice for Karina Hansen", Stonebird.
http://www.stonebird.co.uk/severemebook/severeme.html

 
Last edited:

Cheesus

Senior Member
Messages
1,292
Location
UK
The feeling of very severe ME/CFS is one of being continually tortured for years on end. In my case, it felt as though I was drowning, but always able to gulp down just enough air to stay alive. The daily struggle was a side of the human condition the vast majority of people will never experience, and we should all be very grateful for that.

I fortunately did not experience the pain or headaches described above, but the rest of the post rang true to my past experience.
 

Wolfiness

Activity Level 0
Messages
482
Location
UK
I have very severe ME and personally I find this extremely purple prose embarrassing and not altogether helpful.
 

Misfit Toy

Senior Member
Messages
4,178
Location
USA
This is so sad. I have had many of those symptoms yet never at once. I was diagnosed with CFS in 1989. For me, it was exhaustion and depression with hormone problems right away. Sometimes I wonder just what the hell it is I have besides everything. It's never ten things, it's usually only one I keep hearing. Sigh..
 

Wolfiness

Activity Level 0
Messages
482
Location
UK
I should add I have immense respect for Greg Crowhurst and Linda Crowhurst's courage and greatness of heart and they are clearly suffering a lot more than I am. I'm just not sure depictions of subjective suffering change anyone's mind if they already think we're solipsistic drama queens.
 
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Jessie 107

Senior Member
Messages
291
Location
Brighton
When someone has severe M. E., is it a gradual decline to get to that point? Or does it happen quickly? I just wounder why some people end up severe and some stay the same.
 

Solstice

Senior Member
Messages
641
When someone has severe M. E., is it a gradual decline to get to that point? Or does it happen quickly? I just wounder why some people end up severe and some stay the same.

There's really no telling. Some deteriorate very rapidly, others plateau for a long long time. The best one with M.E. can do is stay within their limits, take plenty of rest and hope for the best.