What does M.E feel Like?

September 2, 2019 9:22 am

During my years living with this complex condition, I have so often found myself struggling for words when someone asks me ‘What does M.E actually feel like? How does it affect you?’

You would think, after 20 years experiencing this illness, I would have an answer to these questions by now. A succinct way of portraying the reality of life with M.E. But the truth is, I don’t think any words could ever come close to describing what its like.

Yesterday I was at a family event where I met some of my partners family for the first time. I once again, found myself stuck for words when asked about M.E. I did my best to explain, but on the way home, my lovely man said to me ‘I don’t think any one could ever truly understand what its like and how it affects you unless they live it with you can they?’

And he’s right. Yesterday, people meeting me for the first time saw my smiley face, make up on, looking absolutely fine. What they didn’t see is the night before where I was doubting if I’d be able to go after having spent a week housebound and in a crash. They didn’t see the Migraine and Vomiting I had upon returning home. Or the numerous ways this condition affects my life and has for many, many years. So much remains hidden. Always. And this goes for so many health conditions really doesn’t it?

This morning I came across some words I wrote a few months ago. They go some way in describing what it actually feels like to have M.E.


What Does M.E Actually Feel Like?

Fatigue so far off the scale,
that it shouldn’t even be called fatigue.
Nothing like ‘tiredness’, actually.
At all.
So far beyond.

Treading water
Over and over.

Like you are gasping for air before being pushed back under with such a strong force.

Occasionally a period of time comes along, where you get to experience a few welcome moments of respite.
Lifting you up,
Maybe even long enough to experience serenity and more comfort in your body for a little while,
Until the next wave crashes and pushes you back under.
Again and again.

You become an expert at covering it up,
Especially on the days that you can venture carefully out into the world.
Most people only see the ‘better days’
But on those days, as wonderful as they are in comparison to the days where you can not move, so much still remains hidden behind your external armour.

During a crash,
You can actually feel your cells scream.
Your brain pushing on your skull,
Your head in a vice
Vision blurred,
Excruciating levels of malaise and fatigue that makes it unbearable to be awake.
It’s truly as if you haven’t slept for weeks and weeks.
Your body constantly urging you to lay down,
With a force so fierce,
So strong
That you can’t think of anything else.

People compare M.E  to depression.
I have experienced both.
Both are awful in their own way.
But M.E is nothing like depression.
The passion and drive and motivation and absolute yearning for life is still there.
Painfully there.
You ache to be out in the world.
Your soul and your inner fire is still so ridiculously alive, that you can feel them begging your body to align with them, keep up with them, listen to them…
It’s your body that stops you.
So physical.

The experience of illness affecting your mind and soul, of course.
Affecting everything.
But at its core, a physical depletion and dysfunction so strong that no amount of ‘pushing’ or ‘mind over matter’ can shift it.
Believe me I’ve tried.. over and over, and paid the price.

Stepping forward,
With hope.
Always hope.
That one day, the glimpses will last longer, and longer.
Until eventually, energy flows through my cells and body rather than fatigue and discomfort.
That the life I dream of living so fully is a possibility.
Life awaits.
Life is.



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