I can't really think of a better way to mark my 14 year anniversary with chronic pain than to present this wonderful (loooong) chat with my diagnosing physiotherapist, Anne-Florence Plante. I will clarify firstly that Anne-Florence's official title is not Soula's physiotherapist but rather her qualification is Senior Clinician Physiotherapist. Not only did Anne-Florence Plante diagnose me but this awe-inspiring human is the reason pudendalnerve.com.au exists. We have stayed in touch on and off over the years which has been wonderful and now, given my move to video advocacy it was only fitting that my first two chats were with Theo and Anne-Florence. Since 2011 when I first published this website, many of you have written to me to ask about the physiotherapy Anne-Florence Plante provided that not only led me out of a 4.5-year search for an explanation to the pain I was experiencing but that ended up guiding my future treatment and pain management. I'm so happy to be able to share this informative conversation. What we talk about in this chat (with lots of other detail in between): 1:05 Diagnosis 1:36 Pudendal Neuralgia 4:50 Appointment approach today 16:00 Anne-Florence's Formal training 20:05 Isolating pelvic pain 23:40 Educating people & practitioners 27:30 Navigating the journey 30:34 An explanation 36:20 Do I still have Pudendal Neuralgia 37:12 Management 43:00 Et Voila! 44:26 PainTrain – My Health Summary
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...?
Watch and listen to my PainTrain Post CV-19 update. I missed my health summary. I didn't feel right not having my own history. Sure I have health files all over the placed (physically, digitally, with many professionals, x-rays galore) but PainTrain is a bit of a rock for me. It's my safekeeping. After not having PainTrain for months, what I most kept thinking about was 'what if I have to go to an appointment and meet a new healthcare professional?'.
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.
Support for artists is rare. Understanding and value for the arts, in general, is rare and if you are an artist with a disability... well, you fall off the media platform altogether. So, what's especially great about Nas Campanella's story about this artists' residency is that it relays the important message of creativity as a form of catharsis and management for invisible chronic health issues. And the artists get to explain.
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?'