I’m on Fire
I bet the first thing you thought was, ‘she’s having a flare’. But you know what? I’m using the word ‘fire’ in the way that people living with chronic pain only dream of – to describe ability! I am on [...]
Need a new search?
If you didn't find what you were looking for, try a new search!
Off you go 2021…
I'm so hopeful for 2022 because I can now so confidently say, 'I can't make it IRL, can we zoom?' without apology or explanation. And, this year it also got a whole lot easier to slap down my cushion in the middle of a full restaurant... and sit on it. It's also become easier for others to understand why I couldn't be somewhere and it became hilarious listening to people rave about online shopping (hello, we've been doing it for years, even before it was all setup online officially). I bet you can rattle off many examples of feelings of inclusiveness – even the word inclusiveness managed to pop up on this website for the first time, where until now, all we could talk about were our exclusions and how foreign we felt within the world.
A (fantabulous) Chat with (the fantabulous) Joletta Belton
How I love mycuppajo – the wonderfully beaming human officially known as Joletta Belton. I was introduced to Joletta's blog by a mutual friend, Dr John Quintner (pain educator for Arthritis & Osteoporosis WA and retired pain physician). Jo's experience (science and creativity) makes her documentation about the complex lived experience real, interesting and easy to understand. It's so easy to relate to Jo. Jo and I also share the added frustrating experience of being an 'injured worker' and having to 'defend' our injuries to unjust workers' compensation systems. Her advocacy and achievements are extraordinary – she is a force driving change throughout the world of chronic pain. I'm so happy to be able to chat with Jo and deliver this video to you all. I know it will be inspiring, energising and informing. I also know that much of the way through you will have beaming smiles on your faces. It's just impossible to speak with Jo and not smile! In this video, Joletta and chat about: 1:04 Checkpoint – the meaning of (Jo's) life 3:53 Being the new 'you' 5:13 Purpose: the lived experience 7:55 The power of words 11:00 When there are no words 13:25 Patients & Practitioners 17:05 Science speak 21:13 Pain in realistic terms 26:15 Angry with yourself 28:50 Forced to defend 33:43 Livelihood loss 35:41 mycuppajo.com and beyond 43:33 COVID impact 48:02 Changing system-centered care 51:55 Gratitude
Perhaps Pain Isn’t my Brain’s Fault
Or my nervous system's fault either. Have you ever let your mind wander beyond the boundaries of chronic pain research? I can't help it, my mind flies around all over the place! Today, it's in Maroni, a village in Larnaca Cyprus. That's where my mum was born. I've been wondering alot about village life lately. And more specifically about my grandmother (Giagia) and her lifestyle in Maroni. I've visited Cyprus four times – each time without pain! I really love mum's village Maroni, it's beautiful. I always make a point of walking around the whole village when I visit so am very familiar with its nostalgic, stony, dry characteristics. I love the feeling of my feet on the ground in Maroni – not sure what that is. Perhaps a memory...
Forwards, Backwards or Somewhere In Between
I've gotten up on my feet only to find myself back down again a few thousand times in the past 13 years. I use my personal chronic health issue to try and understand the management of COVID-19. As mentioned in a few COVID-19 related blogs, there are similarities with chronic illness in the way the virus attacks a human. Qualities like its invisibility, the way it can affect life, the way it has affected livelihoods and the ongoing power over humans are all mountains I've had to get over. And over... and over. And will have to continue to get over.
Don’t Go There Soula
I'm closing the door on the 'reasoning rooms' and I'm not going to investigate what might have caused a sudden flare. 'Soula, let's not go there. Don't enter that routine. Don't walk towards the dead end. Don't waste your time... again!' 'You've wasted years, Soula. Over a decade in fact thinking in rooms that provided no answers. They are mostly empty – blank walls, no windows, no air to breath!'
Life’s Changed
Not knowing what's ahead is a familiar nightmare for people living with chronic illness and injured workers and their families. This lived experience has been misunderstood. This lack of empathy could not have been understood without the personal experience of something like COVID-19 – something impacting the world. Even Governments may just get a glimpse of looking down at their feet and feeling the ground below them is trembling. Being unable to make plans and left dangling, waiting to hear about a way forward – whether you can resume work or even have a job (or business) is excruciating. Add a long-term health issue to that equation and the world begins to fall in on you. You can't help but ask, 'will I get through this?'
Road Surface – Smooth Please
I keep on learning about my sensitivities – it’s mind-boggling! Had someone told me I’d feel the difference between a smooth-surfaced road and a rough-surfaced road while travelling in a car I would have stared at them in disbelief. But [...]
Change of Rhythm
I’m going to change things a little on the site. There’s been a build-up of pressure relating to advocacy in the past year. I gave it up and then COVID-19 dragged me back to it again. [...]
Catharsis With Frida Continues
Tasmania’s Museum of Old and New Art (MONA) has one of the best gallery gift shops. I saw this fantastic jigsaw puzzle of Friday Kahlo in their recent newsletter. I jumped on the order! [...]