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

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! 😉💜

12 thoughts on “poured out: when you feel permanently exhausted due to having ME

  1. Dear Joy, Oh how you are in my prayers tonight, in this latest flare-up that you are struggling with. My fibromyalgia brings on those similar flares, so I understand in part the difficulties you face. How kind of you to participate and share in your nation’s medical study! May there be some definitive help come forth from it all. And may God hold you so near, as you so beautifully expressed in your poetry.

    • Dear Bettie, thank you for your kind, supportive words. You understand all too well how our weakness and experience of flares cause us difficulties and pain. It was a privilege to participate in the #DecodeME study. Though it’s unlikely I’ll reap the benefits of it, I do hope and pray fellow sufferers will, especially the younger and most severely affected ones. Praise God for the strength and help He gives us to cope with whatever comes our way! Love and hugs to you, my dear friend. xo ❤️

  2. Here at our home in washington state, we to work through that. My wife Melanie is also afflicted with the ME/ CFS. Your poetry is beautiful. I’m sorry for the suffering you also endure. May your husband regain his health quickly. Prayers from our home to yours. Roy

    Grace and Peace “Only love—in all its vulnerability to the suffering of others and all its risk of injury to ourselves—will heal and transfigure the world.” From A Resurrection Shaped Life

    • Oh, Roy, how I wish you and your wife didn’t go through this. You will know firsthand how challenging it can be to live with, either as a sufferer or a spouse. Thank you so much for your prayers, helpful quote and compassionate comment. I’m pleased to report that my husband is doing really well now and making a good recovery from his surgery, praise God! Sending healing prayers to Melanie too. Please give her a hug from me. Blessings to you both.

      • Thank you for your kind words. I’m sure you are acutely aware of the ravages of exhaustion. Peace be with you as we move into advent. Be well, live loved.

        Roy Grace and Peace “Lord, let my life be a space in which You can work in the world, clear away my inner rubbish, and fill me with Your Spirit of healing, delight and peace, so that everything I do may be the fruit of Your life in me.”

        Angela Ashwin

      • Thank you, Roy. I’m grateful for your lovely blessing, quote and kind thoughts. Amen to it all. May you both have a peaceful Advent season too and energy enough to enjoy Christmas to come.

  3. Dear Joy, I’m so sorry for the suffering you endure through your illness. Yet in spite of the limitations disease has set on your body, you continue to bless others with your insightful poetry. Thank you for sharing your journey with us. May God give you grace to carry you through this time of your husband’s illness and your own.

    • Dear Shirley, I’m so thankful I can still write even though my hands are stiff and painful a lot of the time and typing can be difficult. It’s an absolute Godsend to be able to share my poetry here and in my books. Though I would prefer to be well, I’ve learnt so much on my decades-long journey with chronic illness. Thank you for your lovely blessing. God is already answering it. Love and hugs to you, my friend. x 💜

  4. I’m so sorry you and your husband are experiencing declining health, Joy. My heart goes out to you.
    “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”
    Such a comforting thought! He doesn’t judge our worth by our “doing” but by our “being” in Him no matter what happens to us in this journey of life. Love, gentle hugs, and blessings of strength for each day, my friend! Know you are loved and valuable whether or not you are active at your sites.

    • Dear Trudy, you have your own hard battles with chronic illness and it’s given you a deeply caring and compassionate heart for others. I appreciate the kind encouragement you have shared. It’s taken me years to see myself as God sees me, and there are still days when the awareness slips and feelings of inadequacy creep in. I love your reminder about the difference between our “doing” and our “being” and the important distinction between them. Sending love, hugs, and blessings of daily strength back to you, sweet friend! xo ❤️

  5. You are a light and encouragement to so many, Joy! The study sounds encouraging, I pray it sheds light on a cure for ME. The hardest part when my autoimmune flares are the brain fog and fatigue. All the “shoulds” that threaten to discourage. During these times, I’ve found that my relationship with God is crucial. He is enough, and so, in Him, I am enough. Prayers and blessings to you, dear one.

    • Dear June, I’m grateful for your sweet encouragement. I pray the study will illuminate potential causes of M.E and possible treatment options for the future. A cure would be wonderful, of course! I empathise with the brain fog and fatigue because they’re symptoms I suffer from too. While ordinary life might be challenging for us, the hope we have in Jesus and the reassurance of God’s constant presence and love are huge gifts that nobody can take away from us. Thank you so much for your kindness and prayers. May you be blessed with better health and strength and fewer flares in the days ahead, my friend. xo ❤️

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