Kirstie Sivapalan
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
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...
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
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
Writing and M.E. 