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.
When I started this website, my hope was to connect people living with pain with healthcare practitioners. At the time (2011), there was no online information or help for Pudendal Neuralgia and other such pelvic pain. I thought if I could provide the information in one place, it would help everyone connect and solve dreaded pain issues or at least speed up the diagnosis and treatment process. I didn't hope it would take nine years. Nine years...!!! But we have arrived and the point is that anyone can access this information session.
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.
When I presented at the Royal College of General Practitioners Dealing With Addiction Conference in 2018 (GPADD18) I was astounded to learn the stats on overdoses. I was horrified to learn [...]
8am – 12noon tradies here ‘fixing’ heating/cooling unit (making noise, causing disruption and breaking much-needed silence). + Phone calls, all day (important, relating to mum’s future care plan). + Huge tree on [...]
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 [...]