Busy Advocating and Making Art – My Life Management
Although pain management is the undercurrent of my life, it no longer rules my life activity. This is a tricky mind battle that underlies everything I do. [...]
Although pain management is the undercurrent of my life, it no longer rules my life activity. This is a tricky mind battle that underlies everything I do. [...]
Can visualising the personal health experience lead to better care and understanding? You all know what I think and believe about this. But now, I'm aiming to inform the rest of [...]
The Primary Care workshop at this year's CODA Conference was my favorite lived experience contribution to date! The workshop approach was more effective than my other 'standup gigs'. Something has clicked with me lately – I've stepped out of chronic illness's emotional and physical sides and more often partaking in health education. I like it! We must believe that twitches, spasms, toilet function-changing effects, noise, screaming, soreness, stabbing, burning, itching, fatiguing, and draining effects of chronic pain can be controlled. If you had told me this between my first and 4.5-year mark, I would have felt angry and said, 'My issue is severe, far more serious than everyone realises, and my healthcare practitioners are all missing the terrible thing in my body, and I am going to die from it.'
It was wonderful sharing my story and vision at the Murray City Coast Country GP Training. AND especially presenting on a stage and in actual physical life to 50 general practitioners (GPs) who [...]
There are no formal qualifications for someone living with chronic pain but patients are considered 'patient experts' and our lived experience is very much valued. I've been invited to several seminars and training sessions relating to chronic pain over the course of my 14-year experience. It's of great significance for me to be able to use the lived experience – no other value for it really!
I’m sure you’ll all agree my advocacy for chronic pain has been extensive in my 13-year lived experience. I’ve learned a lot about who to trust, who I should collaborate with and [...]
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 nights' 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 like a 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 couldn't 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 managing chronic pain. It calls for bundles of learning for both professionals and patients and sacrifice and 100% commitment. It's a little boring and most disheartening for those searching 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 and more!
I’m an event in the spotlight. GP’s, I hope to see you there! (Article from RACGP June newsletter) Events in the spotlight GPADD18 Conference: Saturday and Sunday 4–5 August 2018 The RACGP Victoria [...]
It’s my PN anniversary, eight years (if I don’t subtract the 4.5 years it took me to find out it was in fact PN)! Obviously time brings on reflection which in turn [...]
I must sound like a broken record by now, but once again, I am left bewildered by my chronic pain journey and the contrasting experiences that go from excruciating pain to exhilaration. Above all, I feel incredibly privileged at the opportunities presented to me and so happy to be able to help others by communicating my story. I could not have done this without Theo, my family and of course Peter Lamont and Jacinta Cashen.