I was just starting to stir this morning. Not quite asleep, not quite awake, lying in the world in between. I felt nothing. No pain, no tiredness, for a moment I thought I had recovered and allowed space to entertain the feeling.
But I took a breath and time moved on and it all came back. I felt pinned, unable to move, exhausted. Then the pain set in.
I laughed. It’s not funny but I laughed. If only I could rid my cells of their memories, the changes that that viral infection had made. If only I could tell them a different story. But for now that is the illusion, a deception for which time and reality remains unconvinced. The jig was up, the ruse discovered and I had to accept the world that was here.
Thankfully this reality for me is temporary. I can push through little by little until I do recover to my baseline. As I lay there I thought of all my fellow peers living with M.E, those who live with severe and very severe M.E, that lay flat, crushed by time, branded cell by cell with a tryannical disease which offers them no escape. How must it feel to them on waking? As their body reminds them what lies ahead? How can we still expect our fellow humans to live like this, to exist in a hell dimension discarded by ego and arrogance? To have nothing but imagination to give them freedom and only when the disease permits.
So when you stir tomorrow in that delicious space in between, remember them, #RememberME.
I wrote these words and the poem below for ME Awareness week. Please if you don’t know about this disease find out more and do what you can to speak for those who cannot. https://meassociation.org.uk/about-what-is-mecfs/
There is a moment –
Between the in breath and the out,
Before one number tumbles into another;
Where Life stretches out, lengthening its
muscles to touch the horizon, with an eager fingertip,
And the world sweet like honeyed roses, dips deep into thick warm chocolate,
As what was real sinks to a sigh beneath golden sand.
Here, between the fade of memory, is a day never written, in cells that lie still and clear.
In that moment
is the only word in existence
***. ***. ***.
Flattens me on my bed
Crushes the air from my lungs
Brands my body with its remembrance:
And the jig is up.
2 thoughts on “If only”
Hope you’re starting to feel better now. Interested in your story as I was ill for many years following glandular fever 30+ years ago, age 32. Had my 2nd Covid jab a few weeks ago and now feeling worse than have done for many, many years. I thought it was probably a coincidence but having read your posts I’m not so sure . . . I wish you well
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Thank you. I am starting to improve for which I am so thankful. So sorry to read this is your experience too. There are many of us with a similar story. It’s just horrendous isn’t it? Especially when we have lived with the condition for so long which has included the ups and down of finding a way to manage our health to find our baseline, to then relapse so severely. It can be debilitating and a real toll on mental health. So please know that you are not alone and if you need to share anything further don’t hesitate to get in touch. If you are on Twitter or Instagram you can DM me there.
Also if it helps there is a group on Facebook. It’s very well moderated and full of thoughtful kind people who have experienced similar to us. Here is the link. Take care, sending you love and light and thank you for reading my work 🙏💖✨💖