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
You have all heard so much about Theo and how we have (and continue) to work together through chronic pain. However, you have never really heard from Theo directly nor does the chronic pain world hear or acknowledge the 'carer' anywhere near enough. I thought a chat with Theo – specific to pain management would be insightful and a great way to kick off my video 'interviews'. Although couples have various chemistries and approaches to their relationships I thought there may still be something in this chat to help others with the battle of trying to live, love and grow with the ever-present chronic pain beast! The questions I put to Theo are: — How do you describe chronic pain, Theo? — The way I see it, we both live with chronic pain. Do you want to describe how you manage living with chronic pain? — What's one of the most helpful things you've heard from a professional or found in research to help you manage being the partner of someone living with ongoing pain? — What do you think about the word 'carer'? Is it appropriate, is there a better descriptor? — Are there any good things that have come out of living with the life impact of pain? — There are many negatives but what are the toughest? — What would you do tomorrow if I woke up after taking a magic fixer potion and pain was no longer in our lives? — We're not the people we could have been. How often do you think of the 'mighta', 'coulda', 'woulda'? — It's obvious and clear that we manage well – what advice do you have for other couples/families/housemates/friends who live together or who have a very close relationship with someone who has ongoing pain — Aside from the support of our families and friends, what is the key to managing a relationship and a life when an ongoing illness is present and limiting life? You'll need to be a member to watch the video or sign in.
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
Foam! I Found Foam! Am I excited today! As I progress this path of pain, I retain my non-negotiable pointers – one of which is my need for my custom made seating aid. I would love to ditch this damn thing from under my backside and from my clutch every time I go out for a seated event, but it's just too valuable for my capacity. Figuring out the big 'dangers in me' (remember we talked about DIMS and SIMS?) has been key to my pacing forward.
(Image from my book, Art & Chronic Pain – A Self Portrait) Navigating the horrific pain journey is complex enough. Patients need GPs who steer them to appropriate treaters via the shortest [...]
Theo and I continue to establish our new life in Queenscliff and are enjoying the many wonderful new aspects of our new lifestyle. We're also learning to manage the sacrifices. It makes me feel I've turned a corner. Home Then Actually, a couple of weeks ago, I literally did turn a corner. After staying in Melbourne for a special family lunch, during the evening we also managed to catch up with old friends on our old pavement. I kind of felt a little emotional pang when I turned into the city end of Gertrude Street and saw the magnolias enjoying the Autumn evening light and the little drizzle that was beginning. Very steadily pacing my drinks, the night saw us hop around our old favorite spots. The life turn happened when I stepped out of the Everleigh and instead of turning right to head 'home', Theo and I turned left to head to a city hotel. We were going to sleep at this hotel, wake up in the morning and return to Queenscliff. Theo had to work... Sunday. I don't often have overwhelming emotional moments. I really deal with life's activities quite well. I mean, who would I think I was expecting a perfect life run, right? 'Suck it up!' But this was one of those overwhelming emotional moments and it was damn hard. I knew what it was. I knew that overdue moment since we left 'home' had finally caught up with me. I fully comprehended that we had said goodbye, and life had moved us on. I lapped up every step away from my previous home as the rain fell on/off and the concrete took in all the glittery, yellow, autumn Melbourne evening lights. I bid abiento to each magnolia as I walked up the street. I also lapped up the arms that were around me and the huge hug that Theo and I stopped to have to mark our moment. Home Now
WARNING: This post contains serious attitude as a result of 10 years of personal experience with chronic pain. The post also contains my personal no nonsense view of living with a chronic [...]
Their teachers hope that students are beginning to realize that medicine is not black and white, but many shades of grey. The museum sessions are designed to get these students thinking about the importance of a diagnosis that is not just based on physical symptoms, but also on the larger narrative that informs a patient’s health story.