That would be like me saying ‘goodbye flares’ in my undiagnosed years. You just don’t get to make those decisions when you don’t have explicit knowledge about the beast you are dealing with. And this is where I believe the [...]
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I’ve been waiting a while before writing about the current state of the world and its effect on me, my life and the chronic pain. I’ve been feeling quite confident with a kind of ‘meh’ attitude about the daily routine. [...]
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. Reading Jo's blogs and following her tweets makes me feel I'm walking right beside her, sharing in her extraordinary network of advocates, practitioners, professionals, organisations and of course, kindred spirits. 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! Jo provided the below resources which we touch on through the chat. You can (and should!) subscribe to mycuppajo.com and also follow Jo via Twitter @MyCuppaJo
In this video Joletta and chat about:
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...
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.
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!'
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?'
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 [...]