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 assumed the pain ‘industry’ was still learning about the management and treatment of chronic pain and that’s why communication was so poor. I assumed it wasn’t like that for other severe [...]
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 [...]
I’m sure you’ll all agree my advocacy for chronic pain has been extensive in my 13-year lived experience. I’ve learned a lot about who to trust, who I should collaborate with and [...]
That was my endnote for 2019. As life evolves within my 3km radius, I find myself looking back less and less and looking forward more and more. Bitter, defines the heartache of not being able to see loved ones as often and the missing perks of our previous city life. Sweet, is being defined by new friends, the gallery, our new home and the sea that surrounds us. As for confused, another year has passed and I still don't feel anyone can quite define what's going on with my body. Does it matter heading into a new year?