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 theirContinue reading “Their Final Performance: ProtestNICE4ME”

GET Lost

CAUTION: I am fairly new to this kind of advocacy so apologies that I published this before adding this caution. This blog post contains real experiences of people who have been harmed by a therapeutic intervention known as Graded Exercise Therapy and the stories could be upsetting and may trigger feelings of trauma, loss andContinue reading “GET Lost”

ME and the Virus that had never really gone

(This is the third part of my M.E story. If you haven’t yet, I’d recommend you read parts one and two, here and here.) In the early part of 2010 I packed my bags and headed to Peru. I had decided to have one last adventure before hitting my forties and quickly found myself 3000Continue reading “ME and the Virus that had never really gone”

P/o/EM

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,Continue reading “P/o/EM”

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)”

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 cameContinue reading “If only”

M.E & The Virus that never leaves

“No poly. I feel like a bag of shit. Didn’t surface until afternoon. Can hardly eat. Can hardly move my eyes.” This was an entry in my diary, one of those five-year diaries mainly girls of my day would be gifted for Christmases or birthdays. In my case it was my 14th Christmas, an ideaContinue reading “M.E & The Virus that never leaves”

Ode to a Bad Day #2

I am going through some old poems and revising a few, which is as much as I can muster right now mid-relapse. I wrote this one two years ago when I thought I was having a bad day. Perspective can be a wonderful thing and it can also be brutal as I look back todayContinue reading “Ode to a Bad Day #2”

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 withContinue reading “Defective”

Only love

No poem or funny story for you. Just some thoughts and a plan… It’s been a difficult week Less By Thursday the combination of the confirmation of that individual as leader of the Conservative Party, which supposedly makes him my PM, the way above average or even peak temperature that day and M.E symptoms wereContinue reading “Only love”