P/o/EM

The Kings Library at the British Library, one of my sacred spaces. Photo: K Sivapalan 2018 Free to use

I wrote the poem below twelve days ago now. People with M.E. (Myalgic Encephalomyelitis) will recognise the play on a familiar term we use in my title – PEM, which is short for Post-Exertional Malaise. This is a time when M.E. symptoms intensify – the feeling of having no energy, heavy limbs, exhaustion and depletion, pain and numbness, lack of co-ordination, and in the case my poem here, brain fog, which is a term used to describe cognitive difficulties such as processing information, putting things in order, finding vocabulary and short-term memory. It can last hours, days, weeks or for some with severe M.E, it can become their life. PEM comes after someone with M.E. has over-exerted themselves in some way, or as I often refer to myself, have over-done it. That could be anything from walking a little bit further than normal, doing more household chores than usual, reading or working on a laptop (in this case for me it was indeed that) or disturbed sleep. Stress and anxiety can also bring about PEM as these states take a lot of physical energy and can drain our energy stores very quickly.

I set myself a challenge to write during PEM, specifically brain fog, rather than when the experience had subsided. I wanted to externalise the feeling as best I could through poetry. As a writer access to vocabulary, word-form and structure is essential to channel and evoke inner feelings. It can be alarming when I go to access the information, as you would say a book in a library, and it’s gone, or it’s been replaced with a completely different book, or the book is now in a language I don’t understand. Sometimes whole stacks have gone and sometimes access to the library is blocked completely. There are techniques that can help such as describing the word, like my own internal parlour game, finding nearby words as we do when looking for a word in a second language, or finding a way of being comfortable with the gaps and working with what I have. But there are also times when it is impossible, nothing works save for resting and waiting until the library opens again.

I have left this poem as I wrote it when I wrote it, typos included. It has taken me since then to find the energy and cognitive space to put this post together. I still don’t feel like my flow is completely back, the library is still not in order, but it is an improvement on before. Maybe this is all I can hope for right now and maybe the point is not to write perfectly but write as I am, as all that I am, M.E. and all.

***

P/o/EM

I can’t find my keys/notes/words
They are mesy jumbles. Filed in wrong places/spaces. Empty stacks, no labels

Stumbling limbs. Need to put on socks.
Trying – did I climb a mountain though?
No I washed some dishes. And spoons. Then lost them. Lie down again

A thousand pins in my head trying to create right sentences.

Aches, flashes, pulls, scratches. Cells forming against me. Dense/stubborn/ mule that won’t budge

Where did it go? Lifeforce/energy/me

Exhausted now. Thumbs ignoring commands.
Tratiors.

***

If you or someone you know are dealing with M.E. or any undiagnosed symptoms of lack of energy, pain, brain fog etc and need some guidance please do reach out below or on Twitter @KirstieWrites. As I said it can be alarming when this happens especially if you cannot express what is going on inside you. Please know that whilst it can feel isolating you are not alone. There are thousands of us, millions worldwide that understand what you are going through. And people like me can help. There are also charities and organisations that provide help and support too:

ME Association

Action for ME

ME Action Network

Love and light

Kirstie

Published by Kirstie Sivapalan

Writer. Poet. Indie Kid. Crystal Lady. Pisces. Enthuser. Cheerleader. Helper. Geordie Londoner. Sharer of stuff I know. Sometimes found working in HR (but not very often) Oh, and #spoonie, living with ME/CFS. That about covers it.

2 thoughts on “P/o/EM

  1. What a beautiful poem, I’m so glad you left it untouched and didn’t succumb to perfectionism (ableism?) and instead came out with the raw and true reality of PEM. It gave me shivers reading it as it feels so true to life and the title, I wish I had come up with that!! Thanks for helping the world to see and experience a little bit of what we go through. ❤️❤️❤️

    Liked by 1 person

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