What a week.
If you’d have asked me 4 years ago where I’d be in life, I would have painted a dim or bleak outlook. I was stuck in a cycle of persistent pain; dosed to the hilt opioid-based medications, not sleeping well, protecting myself from scary flare-ups by lying down a lot, constantly using hot water bottles on my back and limiting my activity overall. This was my normal, and it was set in concrete.
I started to seriously consider going into a retirement village with a nursing home attached. I believed nothing could be done to improve my experience of pain and I was planning care to help me manage what I saw as a deteriorating situation. The trouble with that strategy was that I was too young to be taken in, and boy, am I glad about that today!
Fast forward to today. I have found a new normal, and it continues to expand. I just spent a week with the best pain scientists in the world travelling around Tasmania as a support person and a team member on the education team of Pain Revolution's Rural Outreach Tour.
In between those four years there is a significant story of recovering from persistent pain. A three week intensive pain management program, lots of walking, rebuilding social support networks that I’d neglected, and lots of hydrotherapy. Learning to be kind to myself was a significant turning point. Searching for ways to overdose on SIMs, and progressively ditching DIMs* made a huge difference. The life experiences that had gotten me into persistent pain, and stay there, needed to be stripped away, and new strategies put in their place.
What put me, and kept me, in this dark place was overwhelming stress, reliance on medication, protecting myself from harm and exertion, looking for a quick fix and thinking that I was doomed to a life of pain.
It was the opposite of this that took me out of this dark place. Things like reducing my stress, gradually and realistically moving, walking, hydro, while dropping passive treatments such as massage therapy, myotherapy and osteopathy. I was learning about pain and giving active strategies to treat pain a go- even though I was skeptical that they’d work!
As I sit in the hotel reception area right after this energising and liberating week just what are my thoughts about it? How did the week go for me? What are my take out lessons?
It was such a privilege to be part of the Pain Revolution education team. The team is made up of so many outstanding educators who weave their own stories easy to understand presentations that provided the science behind the way that pain needs to be treated for people to recover. Then there were the discussion panels every evening after the lecture sessions. When I was on the panels (and all of the panels had a consumer voice on them), I was asked the same question by health professionals. They wanted to know "What was it that helped you take a different way other the biomedical approach to treating pain?"
My answer? I realised that what I’d done to manage my pain by resting, protecting myself, looking for a diagnosis and a fix, taking pills, taking bigger and bigger pills, had all left me tired, lethargic and in more pain than when I started. So despite my skepticism that a different approach would help, I gathered support and pressed on hopeful that a new approach would work.
The other fascinating aspect to the tour was the different ideas and approaches of every educator. What a team! Another thing that came up at public and professional seminars was the thought that this approach is interesting, but where do you start?
One presenter said being curious, willing to change your approach and having courage to try different things is a good start. I added to this that creating safety around yourself, being realistic that it will take time, having fun, moving by starting where you can and gradually extending your movements, ditching as many danger in me messages or turning them into safety in me messages, getting social by connecting with family and friends and getting good help is all possible.
Then there was the Brain Bus. My pre-tour thoughts about this was nice idea but a lot of work for what? I came out of the tour thinking that the brain bus is pivotal, vital and hugely significant part of our strategies. It gives people visiting the bus a new perspective on how our brains can adapt and how what we hold as rigid views can be challenged. Our brains are adaptable! Great news for those like me who live with or have lived with persistent pain. If I was picking the team for next year the Brain Bus would be my first pick. Dan Harvie is a brilliant researcher who delivers education about our brain with clarity.
This week helped me create a new normal. Previously if I had faced 10 days of responsibility for others, of being available to speak at events, help out with logistics etc, I would have been hesitant and quite protective of myself. Sure I needed to pace myself, however, in an incredibly safe and supportive team I was able to use this circle of safety to extend my capabilities beyond that protective line in the sand to give stretching myself a go.
I had a few tweaks which were best dealt with walking it out, relaxing and being safe. No major issues came up, and I’ve left the tour with a renewed confidence that I can continue to challenge protective buffer. Given I have strategies in place, I can step out beyond those well walked paths of extra heavy duty protection and take more risks that just may surprise me!
I could experience a more robust self-esteem, more fun, and more safety during the tour, and instead of enduring movement, getting to a point of enjoying it! That’s exciting and a real bonus! I’ve had lots of fun, lots of enjoying walks and a deeply rooted experience of being loved and held in high regard for who I am, and for the contribution I’ve been able to make to the success of the tour.
We discovered that some of the smaller towns we went to were the most vulnerable and engaged. By that I mean it was honouring to hear stories from those living with persistent pain that were seeking answers. I saw many folk take courageous steps to attend a seminar in their own community and speak openly of their lived experiences. I saw them leave with hope and information that I trust will help them take those first steps to changing their perspective and challenging their sense of normal.
For me I think there will be quite a bit of challenging my sense of normal in the weeks and months to come. I will continue to improve my confidence in how well the explain pain principles are working to help me manage life, have a life and do so without medication.
Finally my role on tour was to help with community engagement. I worked to get people in small rural towns connected to each other, their community and other communities, and help get the word out. I was available to hear needs, and find creative ways to meet those needs in the many communities we visited. I was thinking about not only the short term, also in the bigger picture sense of the "long game". On reflection, it was quite special for me to hear how many of the people attending our seminars left hopeful.
I had not experienced a Pain Revolution Tour in previous years so I had to take it all in and adapt on the run. I didn't really know if the ideas I had were going to be helpful or unhelpful? Prior to the Tour, I created a "message stick" to reflect aspects of people’s journey with pain. Some of the riding group had their own personal stories with pain and they generously shared their stories. I embedded aspects of people’s stories into the message stick that represented DIMs and Sims. We shared a story each day and the riders shared the stick around the riding group, to reflect how it takes a whole team to support someone out of persistent pain. Also by carry those stories from start to finish the riding group reflected a "never give up" attitude.
On the Cradle Mountain to Launceston epic ride I was struck by the fact that every single rider gritted it out, supported each other and managed to get to the end without calling on the support crew to drive them through those long arduous hills.
We had two of our riders injured, Pene and Emma. In St Helens, I organised a group gathering to give both of them an opportunity to share their thoughts about the challenges of the ride for them and SIMs they were leaning on, to help get through. The whole group pulled together - riders, educators and support crew. The story of Pain Revolution 2019 for me is that the challenges of the ride brought everyone together, many professionals and public turned out looking for answers, and the whole team left Tasmania wanting to get involved in next years tour. The Pain Revolution team truly "rides as one".
* SIMs= Safety in Me
** DIMs= Danger in Me