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 [...]
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...
Everything that chronic pain had undone in the first nine years of this 14-year nightmare, Theo and I have managed to finally mend. Stitch by stitch, we made a new house, founded a new livelihood, purchased a more comfy car, made new friends, welcomed a different breed of fur child and all of this in a new (unfamiliar) town. It's a rebirth! All of this, driven by the hunt for pain management after a ball pop, drop and a bang. Or was it...?
Aaahh, chronic pain! You bittersweet, endless orb of confusion! And this is why I say ‘good riddance and thank you’ to 2020 – the year of CV-19. From my very comfortable position [...]
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!'
Life's pace is vastly slower if you are living with chronic pain. Anticipated outcomes from things like new treatments, explanations about causes of pain, pain research, realisations about personal ideas relating to my own experience all take months, years and even over a decade to arrive. Yesterday was the day I finally received some closure about the wicked Lyrica. There's been a build-up of medication reporting this past year but none of it hit the spot like The Project's report. I love the reporting on this show – it's one of the few programs that brings me to the TV. While watching last night, I got that bullseye feeling: I'm not crazy! How often does a person living with pain come to this blissful realisation? Not often enough I can tell you.
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 [...]
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 [...]
