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 Help! How do I become a member?
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
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!'
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?'
Being resourceful is what makes the difference — it is so hard working life out. But Theo and do it. We burrow down and we make it happen. There's no choice... or rather there was but I didn't want a fulltime WorkSafe paycheck. Of course, I think about that. And of course, I often call myself stupid for declining it – I was safe! I had that full-time paycheck for the rest of my life. But creativity and sharing the day with Theo is so precious to both of us. Even with the complexities and risks, it appears to be the only way Theo and I can live. For this, I am grateful! So I'll stop complaining now and go on with what I've been doing and what I am achieving. It's all good! I'm moving. Life is in forward motion after being so still for so long – a decade at least!
'I couldn't help but feel that when it comes to bringing a life into the world, we've got things down pat — socially and medically. The supports are there and the stigma isn't. Yet, when it comes to preserving that life, our report card doesn't look anywhere near as good — socially or medically. The supports aren't there, and the stigma well and truly is.'
If it weren't for my sense of humour, I'd be well and truly dead a long time now. I thought I'd kick off 2019 with something Theo found that is (not, IS, not, IS) so funny. Wishing you all stitches of laughter for 2019... xx Theo & Soula
My name is Robert. I'm a 20 y.o. athlete. I've been suffering from Pelvic Pain for 6 months. I hope my blog can bring awareness and support to this poorly understood subject.