Wanting to be me, not ME

This poem says so much about relationship
 in Severe ME :


Inside I am still me
Somewhere, hidden within
The tattered shreds of my tortured mind
The limp empty, useless limbs
Which lay motionless, immovable, numb, unfeeling,
Refusing, absolutely, to conform with my will,
Portray a statue
Thrown upon its back, helpless, useless, broken, 
Unable to rescue itself,
Stuck in whatever pose, it was accidentally arranged in.
Moving takes time.
How long I cannot say.
My body, bathed in sweat, is far too hot.
Uncomfortably saturated, itching, burning,throbbing,
My skin crawling with irritation and indescribable sensations.
I am desperate to move.
I cannot call out.
I cannot wipe my face, bejewelled with sweat,
I cannot move my twisted body, my awkward limbs,
I cannot help my self at all.
I cannot even think, 
So blank my mind
My head and neck twisted to one side, 
placed at an unexpected angle
To avoid the worst pressure on my skull,
To try and prevent the intense agony from piercing my brain,
From invading my head, my jaw, my eye, my spine,
I feel strangely calm,
Almost peaceful,
My breathing rhythmic with sleep,
Despite my consciousness.
I long to drift away 
back into oblivious unconsciousness,
To rest and wake whole limbed and happy.
It is not to be.
The monster that has taken over my control
Will not let go its clutches,
No matter how hopeful or resolute I am
To defeat it and fly free.
Another day, I wake into paralysis,
My beloved up, long hours before,
Moving in a different rhythm, to a different tune,
Separated by degrees,
From the world we promised each other.
He waits for me to waken
And begin the long process to freedom 
From the prison that my paralysed self has become.
How do I get to the outside?
How do I connect from the inside to the outside world?
How can I give him a glimmer of my true self,
When all inside is broken and disconnected,
Dismantled, swollen, engorged with pain?
Again and again,
I try in vain to listen, to smile, to understand, to see
But how can I be truly loving, present, here, for him,
When every sound he makes attacks me,
Wounds me, knifes me in my ears, my back, my guts?
When every movement, big or small, fast or slow, loud or quiet even,
Confuses my brain and jangles me all over,
Causes me to groan or flinch or shout with irritation,
When my facial muscles are palsied and frozen 
In a blank, empty, impassive expression,
Unwilling to comply with a grin.
When I simply cannot focus my mind, despite my best intention,
Beyond the cacophony of distress, 
Permeating my senses,
From every cell, from every level of  pain, 
From every millimeter of numbness, irritation, weakness.
When my eyes cannot see out beyond the inside,
Through the darkened, unfocused fog and sun glasses
I cannot even see his beautiful face,
His joy, his love, his kindness, his excitement, his tender presence
Or comprehend what he is trying to say to me,
When one word, spoken too enthusiastically,
Will cause me to wince with the intensity of pain it causes,
To my ears, my head, my stomach.
When I cannot interact because the paralysis, still grips me,
Still remains entrenched within all of me,  
Despite it may have allowed me some brief action
Some limited movement,
Before crushing me back down, even deeper, further away, inside myself,
So that I feel like less than a stick-picture innerly,
In a large, misshapen body
Bloated by steroids,
Bound by invisible chains,
An invisible, desolated alien, in my own life,
Always wanting to express and be
Me
Not 
ME.

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