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
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.
Though doctors and specialists can confirm that he is indeed gravely ill, the fact that Dan doesn’t display any outward signs of sickness works against him, and a faceless assessor declares him fit to work.
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.
View above or visit The Hurting Strings on reelhouse.org/the-hurting-strings Let's watch The Hurting Strings I'd like to express my biggest thanks firstly to Peter Lamont for taking this project on and [...]
An incredibly effective form of communication for Internal Cystitis (IC) and Pelvic Chronic Pain. Certainly captures everything I’ve felt and everything I hope; release those chains! And how true that they are [...]