Severe ME: CONTEMPLATE PARALYSIS IF YOU CAN
(An Extract from my forthcoming book "More Notes For
STOP WHAT YOU ARE DOING RIGHT THIS MOMENT
That means you cannot move any part of you.
Your feet are stuck to the ground.
Your thighs and your bottom are stuck to the seat, whatever your position was, when it hit you.
You cannot change to a more comfortable position, not even an inch.
Your toes are immobile, your hands are useless, your fingers too will not move a fraction.
You have an itch on your face, another coming to your head.
But, you cannot move to scratch them.
They are irritating, but impossible to reach.
So however itchy or demanding the itches become, you still cannot move to scratch them.
Of course you want to. It is a simple enough gesture, quick as a flash in the normal moving world. But no, you cannot move your finger, lift your arm, find your face, move your head, even a degree from where it currently is.
None of these movements are possible, all removed from possibility in one bizarre instant, beyond your control.
Now your heals are really hurting from the pressure on them.
Your calf muscles are beginning to burn with a hotter sensation of pain, but inside that, they are feeling weird and weak, empty.
Numbness is spreading deeper and wider over your whole body.
Your back muscles are beginning to go into spasm.
The pain is starting to scream at you, as your muscles feel like they are crashing and dissolving, breaking down from solid to fragmented strings and fractured cells.
You need to move.
You need to lie down, but your head is hurting and there is nothing you can do to help yourself, except stay calm and try to think.
Thinking though is becoming harder.
You feel as if you have been pushed away from the outside world, like you are disappearing inside a deep inner chasm.
You are losing your ability to focus.
Your eyes are staring.
Your sight is kind of darkened and patchy.
You feel like you are dissolving into nothing.
Your thoughts are harder to find.
You want to talk, you want to say something, but by now your mouth is stuck shut, your lips feel zipped together, your jaw is clenched tight.
You cannot speak a word.
You know what you want to say.
There are so many things you need and want to say right now, but the thoughts, are now disappearing from view.
The pathway to speak has been mysteriously withdrawn.
You cannot ask for the drink you need.
You cannot say you need food, medicine, a blanket or any of the things that might help you.
If you are alone, you cannot call for help.
If you are not alone, you cannot tell the person what you want.
You might manage a grunt or some prearranged sound, but even this may be too much.
No energy to breathe?
No strength in the muscles?
The pain is sneaking more intensely up your body.
Your diaphragm is struggling.
Your chest muscles are burning with pain.
Your face is hurting.
Your eyes are throbbing and dry and may have shut and now refuse to open, despite all commands you can internally send them.
You are really struggling, now.
If you are lucky you may be able to fall to the side and lie down.
You may break out of it for a moment at best and move a limb or tip yourself sideways.
Or your body may just give way so you fall over.
But that is it.
Your breathing, shallow, sounds and feels as if you have gone to sleep.
But you haven't!
You are still conscious and awake inside your mind.
But nothing is working.
Everything is impossible and your bladder is getting desperate now.
But no, you cannot bear to be touched or moved.
Even if you have a wheelchair, you cannot tolerate movement.
You cannot bear being lifted.
You cannot bear motion or movement.
You cannot sit upright.
You cannot be helped in that moment, no matter how great the need.
You cannot go to the toilet, even though you are desperate.
There is no strength in you.
Your muscles will not comply, cannot hold you up, cannot perform the simplest task to help yourself.
Your tongue is numb.
Your lips are numb.
You cannot lick them or open them to speak and say what you need.
This is the place you repeatedly return to, with potentially multiple triggers of paralysis.
This is the invisible, empty, darkened place you inhabit, waiting for the shift to come once more and movement gradually to come back to you, ever so slowly and gradually.
It never leaves.
It always lurks.
Weakness dominates internally.
Numbness and pain define your boundary or disappear your edges, so that proprioception is lost.
Your face may feel as if it has no definition at all.
Your muscles may tremor or shake going in or coming out of paralysis.
The spasms can be strong, violent, repeated, uncontrollable.
This is your life.
This is your body, though it no longer responds to you and you feel trapped inside it, floating in suspended animation.
Hours, day, weeks, decades go by and you are still following the same rhythm that paralysis sets out for you.
One minute you may be able to move, one minute it may be gone.
One moment you may suddenly have lost your hand or arm, your fingers, your feet, your whole left side or your mouth, your eyes or literally everything.
That is the horror of periodic, repeat paralysis, never knowing when it will come, but never quite leaving you either......
Stop what you are doing right now and be prepared to lose all possibility, all plans, all intention, all the things you take for granted.
It is hard to imagine or be able to stay that still, unless you have this.
But if you just stop and reflect upon it, for even a few minutes, you might start to become aware of how shattering it might be to experience it, to imagine all the things you would have lost out on, all the dashed hopes, all the lost connections and activities, how uncomfortable, painful, agonising, it must be, how dependent it would make you on others, how inaccessible the simplest thing you take for granted would be, like scratching your head or reading a book, making a drink, answering the phone, speaking to anyone, getting something to eat, even sitting upright.
And what is worse, it is utterly beyond your control.
For this is an absolutely life changing reality!
AND IT NEVER GOES AWAY.
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