Kirstie Sivapalan
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
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
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
Writing and M.E. 