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.
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
as spasms seize my joints
acting like needles
piercing with intensity
I want it to go away
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! 😉💜
It’s impossible to put into words the deep sense of loss we have for our dearly beloved monarch, Queen Elizabeth ll, and how impactful her death is worldwide, especially for us as her nation and citizens.
She has been such a stable, constant presence in our lives over decades and a huge part of our nation’s heritage. The Platinum Jubilee celebrations this summer revealed the great reverence and love most of us have for our monarch.
How do you sum up such an amazing life and reign? I’m not sure. But in this slightly clumsily written acrostic poem I’ve tried my best to honour the Queen’s memory and convey my impressions of her character and reign as we seek to adjust and mourn her death.
“And when it rains on your parade, look up rather than down. Without the rain, there would be no rainbow.” — Gilbert K. Chesterton
We’ve been blessed with a summer of mostly bright blue skies and unprecedented heatwaves in the UK, yet it’s left us desperate for the slightest sign of rain. Grass is as tinder-dry as straw, and leaves and plants are wilting into an early autumnal response.
When it did eventually rain recently, I watched with awe and felt like I wanted to dance in it. The air became clean and fresh and our hearts lifted. The sight, the sound, the joy of it was palpable.
Though there are times in our lives when joy departs and we feel as if we’re living under a dark cloud. One that temporarily blocks the sun or stays around for weeks and months.
It’s hard to savour the changing seasons if our souls stay parked in winter, but the poem below encourages us to maintain a brighter perspective as we look to the Source of all things who gives us hope to start again.
Perhaps we can learn to splash in the puddles and dance in the rain, and face the deluges and showers in our lives with equanimity. Whether they’re sudden and slight or prolonged and persistent, we can deliberately look for the joy and the light, the relief and reprieve, the comfort and calm, the rainbow promises which God brings to all hurting hearts.
Rain will come. We can’t always be prepared for it. As soaking sheets or delicate showers, rain won’t always be welcomed by us, but we can remind ourselves of the cover, the umbrella protectiveness which God provides over us with His overseeing care, compassion and love. Then we can say, “Let the rain fall.” with the courage, confidence and resilience which faith and hope bring to reassure us that all will be well.
“Healing rain is a real touch from God. It could be physical healing or emotional or whatever.” — Michael W. Smith
NOTE: This poem was extracted from my Sacred Noticing e-bookwhich is on offer at Amazon from 02/09/22 to 07/09/22 as my birthday gift to you! If you would like a reminder of sunnier days, there’s a free printable pdfbelow of a poem called ‘Life on pause’ which is also extracted from Sacred Noticing. And you might like to read myfirst foray into fictionwith a short story about a boy who dared speak the truth. Blessings and love. Xx 🙂 ❤
God knows what each one of us is dealing with. He knows our pressures. He knows our conflicts. And He has made a provision for each and every one of them. That provision is Himself in the person of the Holy Spirit, indwelling us and empowering us to respond rightly.” — Kay Arthur
We long to receive comfort, support, guidance and answers to prayer. God has not left us bereft. We have the Holy Spirit indwelling our hearts by faith. His continual presence reassures, leads, guides, teaches and speaks to us in ways we can understand. The prayer/poem below explores some of the ways we can seek His help.
“It comes the very moment you wake up each morning. All your wishes and hopes for the day rush at you like wild animals. And the first job each morning consists simply in shoving them all back; in listening to that other voice, taking that other point of view, letting that other larger, stronger, quieter life come flowing in. And so on, all day. Standing back from all your natural fussings and frettings; coming in out of the wind.” ― C.S. Lewis, Mere Christianity
Rather like the ravenous, darting wasps who seemingly cannot get enough of the windfall apples in the orchard we look out on, I’m a self-confessed fruitaholic who revels in the wider choice and bounty that summer brings to us.
But the best way to appreciate fresh fruit is to either grow your own—says she, happily munching on yummy home-grown greengages from her son’s garden—or to pick your own (pyo) fresh from the field, like I used to do as a girl.
Though I furtively ate a fair share, fruit picking was done mostly in pursuit of extra money in my pocket, to savour the sun and fresh air, and to helpfully keep out of my parent’s way during the long summer holiday. Here’s a glimpse of that experience… 🍓🍒🍐🍏
An unprecedented heatwave (probably due to climate change and attributed to winds blowing hot air up from north Africa and the Sahara) has been making its scorching, record breaking 40+ degrees centigrade 🔥🥵 way across the UK.
It’s been hard without the benefit of air conditioning. The high temperatures have had devastating effects countrywide, exacerbated health problems, taken lives, and initiated fires on our tinder-dry, rain-deprived land and properties.
We’re so unused to temperatures like this, and ill prepared. So as I wilt and melt faster than an iced lollipop, while we sit closer to our two rather feeble fans, I remember another sultry summer and how it led to a spectacular thunderstorm.
It was just before I became badly afflicted by M.E and chronic illness, and when our boys were small and could amuse themselves for hours making sandcastles. I hope the poem below provides some light relief for you, too… ⛱🐚🩱🌊☀️
This summer is proving to be far too hot for serious thought which is why I’m sharing these memoir style posts about my childhood or later on. Normal service will be resumed in due course! Meanwhile, do let me know if you are enjoying this kind of post. x 😎❤️