Kirstie Sivapalan
I am unsettled today. Disturbed even. The level of intolerance is growing and I find myself asking the question, a common one in what was my HR profession for anyone raising a grievance, what outcome are people looking for? I read a piece on Substack this morning. An article by the journalist Ian Dunt who… Continue reading The Destiny of Intolerance
I wrote a poem and made it into a picture to give it added dimension (no pun intended). It's been a long while since I have managed anything creative. M.E. strips you of everything.Be interesting to see if anyone can spot what is different about the picture though as well as any other thoughts or… Continue reading Stay
Democracy died in the headlinesTruth has been twisted out of existence and we are in the time of stories now So tell your story. Tell it loud and proud for as long as you can.
Ten years ago today I started a blog. I had decided now was the time to follow my long held dream of opening my own crystal shop. As part of that plan I aimed to write and publish a blog post every day for a year about why I wanted to and how I was… Continue reading Ten Years in Time
Please go away. Leave people with M.E. alone. We see you now and nearly every other rational, responsible scientist sees you too. You are abusive, ego-driven little children who cannot deal with reality so you are trying to bend it to your will. You bait our community with the hand-wringing pretense of "think of the… Continue reading To all FND/BPS opinion piece generators
I write not only for immediate engagment and the comfort of a sense of community, but for the audience of One, who will find words like mine in the future, who will piece together this story of greed and global tragedy for another generation - far from now - to understand. Archeologists of the future,… Continue reading My Historical Record
A short poem about what it feels like to be immunocompromised and left behind post- pandemic From BBC interview with Dr Fauci August 2023 Poppies are used to symbolise death through conflict; they grow tall and wild by the wayside. Their red petals signify the blood we all share: people lost to war, Great and… Continue reading Wayside Abstractions
Help. What is being helpful? I contemplated this after issuing another plea to people for help with advocacy who do not live with energy limiting/exertion punishing conditions such as M.E. and now Long Covid. I then posted a vent on Twitter with this analogy which I have since developed: Asking for help from a person… Continue reading Sink or Swim: How to help people with M.E, helpfully.
I really wanted to write a wee mini-roll post today. For a while now I've been thrashing about in the murky seas of Twitter, now the unenigmatic "X", as well as the pristine, sanitised swimming pool that is Zuck's Threads, so it seemed a good time to do an update. Then PEM hit. I mean,… Continue reading Mini-Roll: PEM, plans and the cut-and-paste Press
Time flies, but not, I imagine, if you are an angel. It's been three years since I last wrote an Angel Squad story, a little bit of daftness I dreamt up back in 2019 during the Tory Leadership election. The second one (you might want to read them first for context) was written early in… Continue reading Angel Squad 3: Send in the Doughnuts
Things are looking up. Boris de Piffle Johnson is no longer an MP, his US doppelganger appears to be in deeper water than the Mariana trench and, most importantly, in my world at least, my baseline has shifted back in the right direction. Now, I am not saying those things are related, but I will… Continue reading Mini-Roll:Things can only get…
As a recent podcast obsessive, I am very much looking forward to adding this to my list of regular listens. A great idea and great premise for exploring the reality of living with M.E. Will let Daniel explain further…
Starting an ME and chronic illness podcast.
A friend, Dov Zeller and I are starting a podcast about living with ME and chronic illness, creativity and making meaning. We’re really different people, living on different continents. I’d be happy spending an afternoon watching two football matches in a row. Dov would be found researching for his latest book and making Tempeh when his energy allows. I have followed his culinary lead occasionally and made sauerkraut in the past although I used too much salt and it sat in the back of the fridge for far too long!
If might be that we’re an unlikely pairing but sometimes unlikely works well. We met on twitter back when it was a healthier place and we talk on zoom every two or three weeks. What we do have in common though is a love for photography, a desire to discuss deeper things in…
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Last week and the weekend held two big events for me: M.E. Awareness Week and Eurovision. For the former, I had written a fictional story about living with what is now firmly moderate M.E. I also waded back in to the increasingly scummy waters of the bird site where a lot of the M.E. community… Continue reading Mini-Roll: Social noise and evil genius
It was there the last time she looked. But this time - Nothing. Where the hell did it go? Where did it all go? She stared at the moulded plastic thing on the counter: gleefully orange, punctured with rows of neat little holes in and around its curved bottom. Cauliflower? Something like that but not… Continue reading Drained – a short story for M.E. Awareness Week 2023 (5 min read)
There are three days that exist for me between January and April: my husband's birthday, Imbolc (aka St Bridget's day where I do some hippy crystal-meditationy stuff) and my birthday. The rest of the days are just that: REST. If I do get to do anything outside of these days it's a bonus. I have… Continue reading Mini-Roll 2.0 – What a day this year has been
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
Did you know in the UK that if you got sick and your doctor recommended a non-pharmaceutical therapy that made you worse there is currently NO mechanism to report to this? If they prescribe drugs that cause further sickness then we have the Yellow Card reporting system but if it's physical exercise or psychotherapy which… Continue reading Shake it UP
Warning: This post contains my thoughts on vaccine harm following the covid-19 vaccine. It is neither anti nor pro. I remain committed to the protection of public health through social distancing, mask-wearing and immunisation, and I would have a further dose of a vaccine myself if one was provided which does not lead to the… Continue reading Collateral damaged
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
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 and… Continue reading GET Lost
(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 3000… Continue reading ME and the Virus that had never really gone
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
(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)
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
"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 idea… Continue reading M.E & The Virus that never leaves
Writing and M.E. 