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! 😉💜