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’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 [...]
Being resourceful is what makes the difference — it is so hard working life out. But Theo and do it. We burrow down and we make it happen. There's no choice... or rather there was but I didn't want a fulltime WorkSafe paycheck. Of course, I think about that. And of course, I often call myself stupid for declining it – I was safe! I had that full-time paycheck for the rest of my life. But creativity and sharing the day with Theo is so precious to both of us. Even with the complexities and risks, it appears to be the only way Theo and I can live. For this, I am grateful! So I'll stop complaining now and go on with what I've been doing and what I am achieving. It's all good! I'm moving. Life is in forward motion after being so still for so long – a decade at least!
(Excerpt from Neos Kosmos feature story, Chronic pain: the treacherous disease that steals the lives of thousands, MAΡΙΑ ΚΑΜΠΥΛH 25 September 2019) Η συγκλονιστική συνέντευξη – κατάθεση ψυχής της ομογενούς Σούλας Μανταλβάνου, που [...]
I'm finding it draining to advocate and blog my experiences. But also, I don't feel my voice is as necessary anymore. I want to be known for my creativity and where it aligned with chronic pain to influence behaviour change – specifically the structure of appointments.
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
(Article from the RACGP website) Neelima Choahan 26/07/2018 11:36:34 AM Chronic pain affects one in five Australians. newsGP spoke with a patient and a GP about some of the best ways to tackle the situation. [...]