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
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
I assumed the pain ‘industry’ was still learning about the management and treatment of chronic pain and that’s why communication was so poor. I assumed it wasn’t like that for other severe [...]
That was my endnote for 2019. As life evolves within my 3km radius, I find myself looking back less and less and looking forward more and more. Bitter, defines the heartache of not being able to see loved ones as often and the missing perks of our previous city life. Sweet, is being defined by new friends, the gallery, our new home and the sea that surrounds us. As for confused, another year has passed and I still don't feel anyone can quite define what's going on with my body. Does it matter heading into a new year?
(http://americannewsreport.com/nationalpainreport/my-story-a-pain-in-the-coccyx-8823596.html) The National Pain Report, my story. April 14th, 2014 by Soula Mantalvanos I begged my neurosurgeon to do anything, even to chop my coccyx off. But after getting opinions from other surgeons, he suggested not to go the invasive path as we had the option for an implant called a peripheral stimulator, a treatment that was reversible. It made more sense.
Closure really is something. Feeling like a niggling concern is finally put to rest can be so satisfying, it brings me such calm. Slowly, my pelvic chronic pain niggles are finding their place and providing me with the peace my body and mind needs so I can let go, move on and most of all feel my injury is clearly understood. I had another session with the wonderful Raffaele who continues to treat me fortnightly. I was ready to call the next nerve block last week but after yesterday I'm hopeful again and thinking I was in some kind of a flare. I can't expect (but I will!) that with my effective management flare ups will cease to happen. As I test my capacity and lift my full litres of milk occasionally, walk the dog and go out more often, I've got to expect at some point the body is going to say, 'hang on love, you're lifting too much milk!'
...please gear up with me, imagine the drum rolls and the biggest mountain you can imagine with me standing on the tippy top yelling because this IS real, IT'S true, IT'S official: I'M BACK AT WORK!!!!!!!" No, I've not overdosed on my medication and the stress of a chronic pain issue has not damaged me enough to be hallucinating.., I. AM (wiggling heaps but all the same). SITTING. IN. A (very nice ergonomic). CHAIR. TYPING. THIS. POST!!!!
(Excerpt from the Daily Mail's newspaper) Feminist Naomi Wolf finds enjoyment in sex again after her nerve 'wiring' is repaired by surgeon • Author felt something different was happening after sex • 'I felt I was losing somehow, what made me a woman' • Doctor found she had been born with mild spina bifida
A brilliant lesson on nerves and how they work. I found this through the wonderful body in mind website. Read the forum going or head over to TedED to find more brilliant lessons. Thank you to these forward thinking brilliant people. And to the creatives that put the presentations together. By Educator, Elliot Krane and Animator, Franz Palomares "At any moment, there is an electrical storm coursing through your body. Discover how chemical reactions create an electric current that drives our responses to everything from hot pans to a mother’s caress."