Alexander Technique is a very special kind of physiotherapy. Well, it's kind of not physiotherapy but rather a guiding formula for your body and mind. When I was in my first few years of chronic pain, I sought to set up my pain management team on foot as I quickly realised the car was a terrible trauma for me. I found Knowbody Physiotherapy online and discovered that the owner, Maddy Lock was in East Melbourne which was the suburb just next to mine. Crossing one of Melbourne's busiest roads (and tram tracks) and into the peaceful streets of East Melbourne with its low rise homes and divine parks, I walked gently to my appointment. Theo would pick me up by car as it was usually difficult to manage the appointment as well as walk back home. I learned so much from Maddy. I was in the thick of it when I met her – I needed fine-tuning and Alexander Technique helped me find that. I learned how to approach my daily life in a lighter, softer, gentler way and to this day I use all that I learned – like when I'm getting in and out of a car or chair, or climbing stairs or even holding a glass of water. I'm so grateful to Maddy for not only teaching me so much and persevering when I thought there was no hope but for taking the time all these years later, to chat with me and help me bring you this very special information. Alexander Technique is very impacting for anyone – you don't need to be living with a problem to learn it. It's one of those things that sits in the belly and mind and helps you get through your days. Do it!
Neurostimulation has been key in my management of pain. It's also satisfied my wish to find a way to be as self-sufficient with my management as I possibly can be. My first stim was a peripheral stimulation unit (leads under the skin) and that was implanted in 2011. I still have this unit as a backup. In 2015 I had a sacral stim implanted but that fizzed (in my opinion) within three years. So in 2019 I had the sacral stim removed and replaced with a spinal cord neurostim. WARNING: In the video, I talk about my experience and have a few Xrays pop up to demonstrate a little detail. If you're the squeamish type you may not want to see the images – they are small, however. Read key blogs about my stim implants experiences and adventures:
- My Peripheral Stimulation implant
- Peripheral Stim messing with my bone density score
- My pain management is turning into a thesis!
- Adventures of a stim controller
- Out With the Sacral, In With the Spinal (part 1)
- Out With the Sacral, In With the Spinal (part 2)
- Out With the Sacral, In With the Spinal (part 3)
- Spinal Cord Stim Trial Day 6
A most essential chat – person (living with pain)-to-person (living with pain). As well as having a lived experience of pain in common, Deb and I also share a love for communication – Deb via media studies (film, video, etc) and myself through art and design. For two people with a great understanding of communication, our experiences navigating the chronic pain journey have been different. Having said that, the frustrations have been oh so similar! All of it is ground level information of what it's like to work through diagnosis, a life-changing situation and coming out the other side. Deb also shares her excellent resources – some previously shared on the website but some local to her New Zealand network and they are brilliant! In my chat with Deb we cover: 00:17 About Deb 1:38 People pleasing 3:45 The unknown 5:28 Work status change 5:43 Livelihood & life change 11:15 A new Approach 13:03 Communicating Pain 23:00 Hero speak 23:15 Keys in communicating pain? 24:26 Mutual Understanding 25:36 Partners 28:27 Ideas beyond pain 31:04 Pain Management 44:03 Bravery 45:00 Vulnerability 49:52 The Life Lesson 53:15 'Work' 54:19 Advocacy
There's so much to learn in order to be able to navigate chronic pain. The psychological side of pain is huge as is the energy required to manage it! That's why we need fantastic coaches like Amy Eicher. Certainly what adds to Amy's ability to help and reach people is her own experience of being lost in the search for diagnosis and finding her own way from there. To add to that, Amy's education path is a very interesting one – one that totally validates her ability to understand and help people! Amy and I talk about all the above... and more: 00:39 Amy's Story 1:41 Pain in the Brain 3:56 From Pain to Education 7:41 Restoring Venus 12:08 The Personal Story 12:55 Pathways 13:53 Pain Management 15:52 Appointments 18:23 Working with Amy 22:05 Pain Coaching 24:27 Strategy 28:10 The Essence of Amy 32:42 Transforming Pain 33:53 Gratitude Where to find Amy restoringvenus.com Support Group On Facebook Workshop FREE LIVE WORKSHOP Tame Your Low Back Pain – are you ready to get your life back? Join Amy for her FREE 5 day live workshop and learn the complexities of persisting pain, how you can tame it and get moving again! This workshop will be held March 8th-12th 2021 11:00am CST CAN be seen on replay!Books Restoring Venus: A Journey from Chronic Pain to Possibilities amazon.com/Restoring-Venus-Journey-Chronic-Possibilities-ebook Stories of Hope amazon.com/Stories-Hope-those-want-learn-ebook/ Class for clinicians Changing the Narrative Around Pain is a 14-hour course explicitly designed to expand your current practise through an evidence-based understanding of the biological and chemical changes that occur when one is in chronic pain.
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.
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
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.