Severe ME Day: ‘LIFE’ with Very Severe M.E. – A poem by Natasha Adams | 08 August 2019


Guest Poem by Natasha Adams.

I’m classed as being very severely affected by M.E. Essentially bedbound for the past 3 years – but was moderate/severe for 8 years before that. I have a lovely counsellor who recently encouraged me to try writing some poems. When she read them, she suggested that sharing them might help other people in a similar position, or perhaps help others understand the reality of what we face.

When I say “I’ve had enough”,
I say it with a laugh and an incongruous smile,
Because, admitting how excruciatingly painful
The place, the life I daily inhabit has become,
Is simply impossible.

After the infernal temperatures of the last week,
I thought today’s rain would bring relief.
But yesterday’s stifling heat & acrid air
Has been replaced by oppressive humidity,

The foul stench of putrid, rotting compost,
Swarms of flies, desolate greyness.
It feels much like the story of my own life:
I brace myself against the current storm,
Confident that, if I can just survive today,
Tomorrow MUST be better.

Day after day this fragile hope is crushed,
Shattered, ground down like broken glass.
Monotony, drudgery, despair! How can I escape?

Even eating has turned from a time of joyful sharing,
To lonely misery: repulsed by food, all appetite gone.
Only increasing nausea, fear of impending pain,
And the bleeping of regimented alarms herald my meals.

Unable to chew or swallow solids, carers spoon feed me,
Homogeneous brown mush that resembles dog ****!
I endure the ordeal of their harsh voices piercing the quiet,
With incessant chatter: ‘calamities’ like a broken nail!
Meanwhile I quietly choke.

Choking on the litres of saltwater that I’m prescribed,
Adrenaline surges: cold sweats drench body and sheets,
Astringent liquid burns my throat and I gasp for air!
These episodes repeat, day after day, meal after meal.

My chest constricts, wheezy, as if clamped in a vice.
The rain lashes down from a dark, inky sky.
Even this drab day too bright for me:
Blinds and shutters down, sunglasses on, but still,
Small stray chinks of light pierce deep into my skull.
All the while, cars resort to headlights at noon,
And my carers complain it’s too dark to see.

My languid, lifeless body lies here, motionless, flaccid:
Limbs heavy as lead, tethered to my bed by invisible chains.
Like flu, every bone, every muscle aches, throbs.

Body on strike! The wearisome pain so constant, that,
Like part of the furniture, I barely even notice it,
Until I try to move then all Hell breaks loose!

Fearsome pain: my body so exquisitely tender!
I recoil, yelping as carers gently reposition me,
Fighting back tears as agony overwhelms!
I close my eyes, focus on my breathing,
Desperately clinging to the knowledge that,
This pain cannot last forever!
I long to flee this nightmare: a few minutes reprieve!

My search for distractions, increasingly fruitless.
My eyes let me down, they refuse to focus:
Double vision leaves me disorientated, dizzy.
Like sand lacerating delicate eyeballs, I wince in pain.
I cling to my bed, gripping on for dear life:
Vertigo! The static surface seems to tilt and turn,
Throwing me around like a little boat tossed at sea.

A friend once claimed, “You’re not drunk
If you can lie on the floor without holding on!”
Stone cold sober, I can’t just sleep this off.

A former high-flyer with a double-first from Cambridge,
Now I lie here, identity and vocation stripped away:
No longer able to recognise my husband, my family;
Conversation no pleasure, elusive as Double Dutch
I get lost in the mire of swirling words, slippery as eels!
The words dart away from me, leaving me fumbling, dazed.

Thick black compression tights bind my legs,
Taut as a swimming cap, causing pressure damage.
I yearn to feel the gentle summer breeze on my skin,
But without tights, my drops in blood pressure and nausea,
Are unbearable, unmanageable, incapacitating.

At night, overcome by a haze of pain and nausea,
I huddle, balanced precariously on the loo, ever more faint.
Bones protrude through my skin like a starving child;
My stomach so bloated I look pregnant! Minutes tick by:
No relief! My writhing guts cramp and seethe,
Determined to forcefully evacuate their contents.

Being dependent on carers for my every need is degrading,
But that is nothing compared with the utter humiliation
Of being unable to manage my own toileting needs.

Is it easier to endure these trials if your life is worthwhile?
My life is reduced to nothing: wilted and withered away.

My husband is amazing: a superstar, an angel!
But how do you sustain a meaningful relationship
When everything you once shared has been lost, stolen?
Pleasure, interests, meals, excursions, conversation;
Even our marriage bed, replaced by a noisy hospital bed;
It brutally drives him away, forcing him to sleep next door.

Once bountiful, his patience now wears thin:
Tired, frustrated; gentleness replaced by irritation.
He hates the constant intrusion of carers into our home;
I am just a burden: a millstone round his neck.

People who should know better ask if I want to recover, and
I’m vanquished by prejudice and stigma: “All in your head!”
Visitors constantly remark how well I look! How well I cope!
I know I put on an act for them, but really? Are they blind?
Can’t they see what this foul beast has done to me?
Lost in my own house, can’t even recognise my toothbrush!

Imprisoned in this dilapidated body, mind follows suit.
Outside, my rambling rose, once such a joy, is dead!
Today’s downpour turned its crisp, brown corpse into
A congealed, infested mess defiled of all former glory.
It reminds me bitterly of my own plight:
This pitiful existence, devoid of anything you could call ‘life’.

Despite the anguish, I don my mask, my indomitable smile,
Determined not to be overcome, overwhelmed by misery.
I am a hostage, incarcerated in my bed, but my mind is free!
Free as the wandering albatross, to gather sweet memories,
Live vicariously through others, and dream of a better future.

Footnotes:
The name above has been changed to protect this person’s identity.

The ME Association greatly appreciates every person with M.E. who comes forward to offer us their stories or to share their experiences. We are always on the look out for more especially from those able to send photos as well.

Talking about Real People with M.E. is arguably one of the best ways we have of raising awareness and it can help to bring us closer together as a community.

If you would like us to consider your story for future press releases, news-media articles, guest blogs on our website, social media posts, or ME Essential magazine; then please contact either: john.siddle@meassociation.org.uk or russell.fleming@meassociation.org.uk

Image credits: 123RF/NastassiaYakushevich/ximagination/KevinCarden/LuisManuelTapiaBolivar/Kevron2001.

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