Close up of a packaged Cadbury's Mini-Roll on a dark wooden table. Packaging features the phrase "I'm on a Roll"
Advocacy, creative writing, M.E, Politics, Social change

Mini-roll

M.E. Life, politics and social angst Not much time and/or energy? Go straight to latest entry here. Each entry is no more than 2 mins to read. What is a mini-roll? Inspired by the UK "mini" Budget, I'm starting a series of "mini" blog posts about living with M.E. The difference will be that my… Continue reading Mini-roll

community, M.E, mental health, wellbeing, Work

Dear M.E. Ally

It's about Time Dear M.E. Ally This blog post is for you, and it's about Time. Time as something finite, something precious and something unequally distributed amongst us, especially pwME. (The abbreviation pwME is a shorthand for people with M.E. used on socials which I will be using here). Settle in as it’s long and… Continue reading Dear M.E. Ally

creative writing, M.E, Poetry, Spirituality

Return of the Sun

A Winter Solstice Prayer for the sick Winter Solstice dawn 22 December 2021 Let me streak the sky gold with my fingers thenBreathe in its frosted kiss to quench my lungs.Let the brightening Sun soak through my skinAnd Light be all throughout reflected, returning the forces that nourish my frame.Yet, let the cool of the… Continue reading Return of the Sun

creative writing, Gratitude, M.E, Poetry

Treasure

I couldn't sleep. I had insomnia at both ends of the night, one of the features of M.E that I struggle with the most. I finally gave up around 6am and, with my stomach also awake, I decided to get up, go downstairs, make myself a cup of tea and treat myself to some ginger… Continue reading Treasure

community, creative writing, M.E, Poetry

Undercurrent

I don't have an invisible disabilty, I have a disability visibly ignored.You might, if you want, see it in my eyes if you look close enough; in my voice, with a keen ear. There's even, sometimes, a smell. Sickly sweet. But yes, there are no obvious signs - no chair nor stick, and likely a… Continue reading Undercurrent

community, creative writing, M.E, Poetry

Their Final Performance: ProtestNICE4ME

Image reads: THEIR FINAL PERFORMANCE 1.1.   Who better than those who profess to know minds to twist our actions? Those that have plundered the void to plug with their confidence (tricks). To keep those of us blighted by secrets locked tight in our cells bombarded by their (un)veiled attacks. To call us the aggressors in their… Continue reading Their Final Performance: ProtestNICE4ME

creative writing, M.E, Poetry, words

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… Continue reading P/o/EM

M.E

M.E and the virus that went away…for a while… (maybe)

(This is the second part of three of my story of M.E.  If you haven’t yet, I’d recommend you read part one here) 2nd Edit: Oops. I managed to forget a very significant event in my life, or maybe block it out, due to my desire to finish this piece and rest. I've added it now.… Continue reading M.E and the virus that went away…for a while… (maybe)

creative writing, M.E, wellbeing

If only

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… Continue reading If only

Consumption, M.E, mental health

Defective

New poem for ME Awareness Month 2021. I wanted to write something that reflects the frustration of being dismissed, ignored & gaslighted because we cannot be "good productive members" of a consumerist economy. Seems apt to post this on International Workers Day too. For more information on living with M.E or caring for someone with… Continue reading Defective