Day Release : One Man's Experience of Severe ME

It is very rare to read an accurate description of Severe M.E.;  it is even rarer to read a man's experience. I am deeply moved that Malcolm has chosen to publish his account  through Stonebird.

My wife, Linda who has Very Severe M.E. comments :

"Malcolm's piece is extremely moving. It highlights simply yet starkly the ongoing onslaught of a pain filled life and the profound isolation experienced as a consequence. Mostly , this suffering is invisible from the outside yet harrowing moment by moment when lived from the inside.

Anyone who reads this piece, who has Severe ME will be saying YES, YES, YES with every line. Anyone who does not have ME might gain a glimpse into the inner tortured reality and perhaps find new understanding and compassion."

(Day Release can also be downloaded as a PDF from Stonebird :

DAY RELEASE by Malcolm

My eyes open; there is pain. Like barbed wire squeezing every nerve, a tireless scream. As usual no sleep – just intervals of nightmarish dozing, a burning bladder and incessant itching. A deep fatigue bruises my muscles.

Dragging my self upright there is a void in my chest. My heart skips a beat then electricity stabs across it. Legs buckle; once exceptional balance long since destroyed as I stagger to the living room.

Porridge, again. It is neutral, unlikely to flare the constant food intolerances that swell my insides with a poisonous torment for weeks at a time. It has marked birthdays and Christmases. I am fond and grateful for its warmth.

Then a hastily swallowed handful of the latest miracle cures. Hundreds of broken promises languish in empty jars in the garage. At worse they make me more ill, at best they are useless. I have spent tens of thousand on them because there is nothing else.

I attempt my daily stretching regime. It prevents complete muscle atrophy and although agony I never miss a day. If I stop I will never get out of bed again.

The shower is treacherous; the room spins as my feet scrabble for grip. Struggling to dress I collapse onto the bed.

Lunch. I am confused, disassociated; my voice seems to come from the salt cellar, then the soup bowl. My words are jumbled, incorrect. I need to sleep, but today I have a reprieve, a brief view of the outside world. The first in weeks. Time is fractured and slips. Sometimes I am not aware of weeks at a time. I must seem normal. No-one likes illness - it makes for uncomfortable conversation. No friends remain. My illness had erased them all. I rely on parents.

I cannot keep myself upright in the car seat. My hands and feet are blue, stabbing with an icy deadness. Poison streams through my veins. Every jolt in the road tightens the torment. Then I must totter with my stick to the café. I talk too much, adrenalin rescues the failing system. My bladder had gone, every five minutes full again. Then it loses control, overwhelms my stuffed padding. How can I face people? I pull my coat down. They will not notice. Then back to the car. Outside the world fades and I sink to my knees. Convulsions embrace me.

I cannot eat. My stomach spasms, a hundred punches delivered without mercy.
It is many years since I tasted what people take for granted: onions, garlic, bread, tomatoes, pasta, milk, alcohol, pleasure.

Too weak to sit, I am propped, broken on the sofa until the clock shows that it must be time to sleep. Except it isn’t and it will not come. Lightening rages though my brain. In the early hours you think of everything lost. Family, friends, career, dignity, hope, dreams, travel, independence. All totally and irrevocably ripped away. Then there is pain again, a metronomic pulsing measuring the dawn.

How many days like this is it humanly possible to endure? This is M.E.


  1. I'm not as severely affected as Malcolm but a lot of what he says about pain (the type of sensations etc) resonate fully with me. I appreciate all of us with this devastating disease are individual in how we tolerate and react to meds, but pregabalin (Lyrica) has helped a tad, & taken the edge off the pain. It took many months for the side effects to abate but there was no other level of neuro pain was so substantial it was literally 'do or die'. I expect Malcolm has been down that road..but I thought I'd mention it incase it helped in some small measure. If attempted the essential caveat is to start very low. Even on my now highest dose I'm still lower than what is considered the normal lowest starting dose. So another caveat would be...listen only to your body and not to the Rx doctor.

  2. I agree with LILPINK, I'm not feeling able to concentrate enough to give a justifiable responsive to what I have just read, but my Heart is with anyone suffering even half as much as this...


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