Chronic pain management is tough! And it's also different for each person who lives with and manages it. I wouldn't be much of an advocate if I didn't welcome you inside my sanctuary space and show you a teeny glimpse of how I approach daily life – especially when I've promised to bring you video content and interviews about pain management and chronic pain research with other fabulous people. So here I am, live to you from my sanctuary space, from a room that is my everything space otherwise known as, an artist's studio. I present a little of my management wisdom and creativity, the how and why I came to be in the space and what is going on with all those dolls in the background! This video is Membership material so therefore only visible to you if you have a current membership for pudendalnerve.com.au
In November this year, I was invited to present my pain experience to a group of 40 GP's. The topic was: An Approach to Chronic Non-Cancer Pain and the workshop was facilitated by Dr Paul Grinzi for Murray City Country Coast GP Training. Where does one start when asked to present to 40 pain interested GP's in 20 minutes? There's a great emoji to illustrate the look on my face when I ponder this question. You can well imagine. As an 'expert' in my 'field' 20 minutes to describe 13 years of living with chronic pain of which 4.5 years were spent lost in a forest is still a tough gig. However, this was a presentation to medical professionals. And they know everything, right? .... I've decided to make this video a paid resource. All proceeds go towards funding this website and PainTrain – My Health Summary. What do I talk about in my video? — O:43 My story — 2:50 Investigating pain, research & treatment — 4:26 Diagnosis — 5:55 Advocacy — 7:45 The experience of pain — 8:27 Medication — 9:35 Characteristics of Pain — 10:55 Planning life with chronic pain — 12:09 Pain management — 13:50 PainTrain
And ladies can also benefit as well! I’m signed up to Dr Susie’s news – highly recommend you do so also as she is a wealth of information. Although Dr Susie specialises [...]
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.
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.