#ME

poured out: when you feel permanently exhausted due to having ME

/ Joy Lenton / 12 Comments

Dear Reader/Friend, as you might have noticed, I’m not as active here as I used to be, partly due to my husband’s own health decline and recent surgery which required me to try to step up and attempt to plug the gap while he’s been incapacitated for a period.

But the biggest factor is a slump in my own health, with a worsening of the M.E symptoms especially. It’s been accompanied by increasing flare ups of the arthritis, fibromyalgia and Ehlers Danlos syndrome symptoms I also struggle with.

ME feels like having a permanent kind of flu virus. A body and mind going on strike because they’re swiftly overwhelmed and exhausted by life. When your legs feel as if they’re trying to walk on sand and your head’s full of cotton wool as well.

This hasn’t been written to try to elicit your sympathy but to help raise awareness of ME. Because so many people are either dismissive of it or are suffering in silence that I can’t help but try to convey a smidgen of what it’s like to live with it.

I hope the poem below (previously shared on the Chronic Joy Ministry blog) provides an insight. And that the details I share about the DecodeME study I’m involved with might stir your interest or prompt a prayer, perhaps.

Poured out

I am spoonless
any energy I've had
it's all used up
poured out drop by precious drop
on life's simple, basic tasks

so I must rest
retreat to a darkened room
crawl into bed
and let my body relax
hope my mind switches off

too much white noise
issuing from my thoughts
like buzzing bees
unable to be at peace
blinded to their destiny

my heart aches
with this inactivity
I feel frustrated
because it's enforced on me
because time just slips away

pain infiltrates
as spasms seize my joints
acting like needles
piercing with intensity 
I want it to go away

life swims past
it’s lost in a brain-fogged blur 
a cinema reel
screening inactivity
in a life lived with M.E 

I feel worthless
but God draws near, whispers
hope to my heart 
we’re not judged on our worth
it’s decided at the Cross

what matters most
is how we live and we love
how we yield to God
surrendering our hearts 
and giving help to others

for you and me
our soul's productivity
will be evident
measured by increments
and how our life is spent
© joylenton


DecodeME study info

If you’re 16 years old and over and reside in the UK, you are invited to take part in DecodeME, the world’s biggest ME/CFS study.

It will collect information from tens of thousands of people with ME/CFS and analyse DNA to see whether the disease is partly genetic and if so, help pinpoint what causes it – which is the path to finding treatments.

The first step is to take the DecodeME questionnaire and then you may also be asked to provide a saliva sample. They can be done from the comfort of your home. I’ve submitted both myself.

Your experience matters. Future treatment and research are reliant on it. Please help if you can or pass the link below on to someone you know who has ME and fits the criteria above. You can take part at www.decodeme.org.uk

Let’s get serious about getting to the bare bones of what causes ME, a seriously damaging autoimmune disorder of the neuroendocrine system, because it plagues lives, steals livelihoods and has been greatly misunderstood. Thank you! 😉💜

Lost time

/ Joy Lenton / 10 Comments

Do you ever wonder where time disappears to? Me too.

Each and every one of us has the same 24 hour allocation yet none of us will spend those hours in exactly the same way.

As an M.E and chronic illness sufferer, time may seem endless in terms of hoping for improvement and recovery.

Sleep can prove elusive and erratic.

Rest is far from restful if pain intrudes too much.

The life I dream of seems to slip through my fingers like grains of sand while I scramble to catch them.

Where did all those wasted minutes, hours, days, weeks, months, and even years go?

I was laid low,  or slept through many of them.

Moans at midnight.  Sighs at dawn.  A body rising stiff to greet a day already half over for many.

Here I am:

A woman with training and experience that lies wasted.

A nurse needing care myself.

A poet penning in PJs.

A wife without the means to be a proper helpmate or companion.

I wrote the poem below at such a time of introspection. It spoke for how I felt then and may speak into your situation too.

‘Black Hole’

There’s a space

in my life

where time disappears

down a black hole

already littered

with discarded hopes

dreams and desires

enough to fill

several craters

stacked high

or light

a multitude

of funeral pyres

Where does it all go?

How do these things

slip away

from my grasp

writhing hither and thither

with eel-like slither

when all I want

to do

is clasp them

to my heart

and cry, “Stay!”

Maybe I’ve

risked too much

extended thought

and expended energy

on things not

really meant to be

some crazy schemes

foolish inanities

to become

a bonfire

of the vanities

©JoyLenton2013

And yet..

This is looking at things from a limited human perspective only.

Time is redeemable when our days and ways are surrendered to the One beyond its restrictions.

He uses everything in our lives for His purposes. Not a crumb is wasted.

How do you feel about time disappearing? 

On a day like this

/ Joy Lenton / 12 Comments

Each new day holds hope and potential, promise and purpose to be revealed.

Each day is gift and blessing to unfold.

Only some days feel heavy and weighty.

Time disappears and nothing gets done.

Moments slip away like sand.

I have many days like that with M.E when symptoms are worse.

All that can be done is to ‘go with the flow’, be it turgid and slow.

The poem below was written on such a day as this.

‘This day’

This is a day for sheltered darkness ~

windows closed tight ‘gainst sound and sight

curtains shielding all piercing light,

weary frame resting in the bed

trying to still restless thoughts in my head,

feeling weak, exhausted and drained

in a body racked with pulsating pain

as I wonder ~ with some despair ~

if this pain will ever cease or disappear.

And I sense Holy Spirit’s soft caress

in my heart as He draws near

to impart wisdom in the way He does best.

For He can calm and still every storm

bring comfort to all who are lost or forlorn,

bring hope, joy and peace again

to heart, mind and body

made heavy with pain.

All God is asking of me today

is to sink grateful, restful

into His loving embrace

and drink deep draughts

of His sustaining grace,

trust and believe for healing

in days yet to come

while He keeps revealing

strength to endure

this particular one.

©JoyLenton2013

These seasons of pain, stress, strain and disease literally drive us to our knees and make us cry out to God for help and relief.

They are what shape and make us even as they seem to break us.

God knows. He hears our unspoken fears. Sees tears shed and fall and captures them all. Nothing gets past Him.

And when it feels like we cannot go on a minute longer, there is grace given to endure and perseverance to make us stronger than we were before.

Christ-like character is honed in the furnace of affliction and deep spiritual work takes place within.

We can take heart as the heat and flames lick ever closer, knowing our God is in the midst of them with us and will bring us out the other side ~ with ash and soot clinging to our frame maybe ~ but with a deeper dependence on His grace and mercy.

********

Day 31 of 31 days of #poetryforthesoul ~ Thank you for accompanying me on this journey, even if it has taken longer than anticipated! I hope you have enjoyed the variety offered.

And if you are new here, do feel free to check out previous posts. If you have a favourite please let me know as it may find its way into a future anthology. Thanks! I really appreciate you stopping by.