Kirstie Sivapalan
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
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...
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
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
You told me to wash my hands and yet to raise them high in wanton communion, You ridiculed us as turkeys lurking and squawking whilst you traded your fortune, You told us it wouldn't matter if we were close, and we inhaled it in, deep. I did. For a whileI stopped, worrying in hope of… Continue reading Gaslight in waiting
For the Youtube version please click here. My latest poem, below, which follows on from my most recent post, is a reflection on the messages we receive every day about who we should be and what we should value - money, fame, power, success. All of these messages, and the constant bombardment of such, can… Continue reading Your beauty radiates.
The following poem was inspired by the growing mass of voices on Twitter. I asked myself, what is the essence of the message behind the words. What is it we want people to hear. Included in this, is my own voice. This is what I saw... Can you see me? Can you help me? Can… Continue reading Shouting into the tornado
What if we are angels in training? Each a step closer to our wings Although these wings are not feathery and light They are made of the strongest substance in the Universe, forged by experience and powerful learning They are every colour of our emotions They are soft to touch after lifetimes of abrasion Yet… Continue reading Winged
Writing and M.E. 