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! 😉💜