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 [...]
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
I'll deem my efforts a success. I managed. I learned a bundle. I made something of the chronic pain experience. And I believe I provided some insight. I arrived at Yarra Valley Lodge on Thursday night and left Sunday early morning to manage the presentation, question time and a short attendance at the dinner on Saturday evening. So that's 3 night's sleep (and one nap Saturday afternoon) to get the focus I needed, and so I could appear in a way that I felt reflected my most Soula self. The presentation (below) took weeeeeeeeks to put together! Something that would have taken me a few short days previously. That might sound a lot of sacrifice to many of you but with this approach, my pain levels remained low (if not off) and on my return to Queenscliff, I could resume my part-time work and the week ahead as per normal. It worked, I'm pacing up! I do have a niggle though. We're not learning fast enough. We're not listening hard enough. I left disappointed I hadn't achieved enough. My presentation I wasn't able to film during the conference for obvious reasons but I have put together the graphic presentation with my voice over. WARNING: This presentation contains calls for a new approach to the management of chronic pain. It calls for bundles of learning for both professional and patient as well as sacrifice and 100% commitment. It's a little boring and most disheartening for those on the search for a quick fix. In this presentation: 0:28 Outline 0:43 About Soula 0:58 The accident 1:44 Chronic pain treatment & investigations 2:19 The peripheral stimulation implant 2:36 Diagnosis 3:00 Quality of life — More treatment 3:27 Communicating Pain 3:50 What is our understanding of Pain? 4:50 Resources for pain — pudendalnerve.com.au — The Hurting Strings Documentary — My book Art & Chronic Pain 7:14 Changing our ways — New definitions 7:48 John Quintner — the third space — pain is like love 9:21 Explain Pain — Prof Lorimer Moseley / David Butler — What should we know about pain? — Tame the Beast 10:40 Changing our behaviour — Protectometer — PainTrain – My Health Summary 11:20 Example management — (how I managed the talk) 11:28 PainTrain examples — first appointment healthcare scenario — postoperative healthcare scenario — follow up specialist appointment scenario 15:28 Conquering pain management
I would have had to be dead not to front up to an opportunity where I could present my pain journey to 180 chronic pain interested practitioners. Was I terrified? Absolutely! But as if chronic pain hasn't trained me for that, pushing me past all my boundaries and limits, and facing constant fears... this was going to be a piece of cake in comparison! The Alliance for Improving the Management of Pain 2014 (AIM Pain 2014) was held in Sydney and PainAustralia were searching for a patient to tell their story. My first thoughts were; I had to be able to tell my pelvic pain story through art, Ms Soula had to be on the stage with me, and I worried that this was impossible to physically manage without Theo's help. As it turned out all that was ok, in fact the organisers were most enthusiastic about the creative side, and the support for both Theo and I was 100%. I was asked to present my story as honest as possible and in my own words and pictures.