In 2018, we ended our Rural Outreach Ride in Albury-Wodonga. Albury local Trevor Barker was one of the reasons why our events there were such a success. Trevor made enormous efforts to engage with his community in Albury, and the enthusiasm and commitment he showed was nothing short of inspirational. We're so glad to have Trevor join our team as our Community Engagement Officer, helping to get our message out to people in Tasmania for our 2019 ride. Trevor's shares his story of pain, recovery and community action with Pain Revolution.
Learning about Danger and Safety
I just didn’t wake up suddenly in overwhelming pain. I’ve learnt that persistent pain is something that has its own story. In a sense, it is part of the context of my life. My journey with pain began in early childhood where I learnt about myself, life and how to handle challenges- both physical injuries and psychological stresses.
My upbringing taught me how to handle challenges and respond to them. It laid the foundation for my response to pain as an adult and contributed to me being locked into a pattern of handling challenges in a particular way. This meant it took me down a path where pain was part of my story and ended up overtaking my life.
As a child I learnt that life was unsafe. That it wasn’t safe to talk about what was hurting me. It was better to say nothing, push on, forget it and pretend all was ok. These aspects to how I managed life were embedded into who I was and how I responded to pain as a young boy. I was continually bullied at school on a daily basis. I left school as early as I could as this environment was unsafe and left me with many scars emotionally. I started an electrical apprenticeship when I was 16. In those days apprentices were expected to do heavy physical work. Digging, carrying heavy equipment and drums of cable, working unprotected, at horrendous heights, were normal parts of the job. It was a continuation of life in an unsafe environment, that I experienced as my normal.
Getting on the Pain Roundabout
I first injured my back carrying a ladder at full extension when it hit a beam. To get past the beam I bent the ladder back and under the beam. After getting past the beam I had to regain control of the ladder. I pushed hard to get it vertical and about 3 days later I was in a world of pain. I took a few days off work on sick leave and went back to work.
After leaving the electrical industry I retrained and started working as an attendant carer. I did this work for 3 and a half years and I loved it. I was working with people living with acquired brain injuries. During that time I injured my back twice and my recovery took much longer this time. It took months for me to get back to work then I reinjured my back within days of returning. I went back for more physiotherapy, anti-inflammatory medications and Valium to help relax muscles that reacted to pain in spasms. My doctor referred me to orthopaedic surgeons and neurosurgeons.
For the next 15 years or so I managed my ongoing pain with ever-increasing levels of pain medication and decreasing levels of activity to protect myself from flare-ups and further injury. I used hot water bottles all the time and was resting by lying down as much as possible.
I had three spinal injections over 18 months. After the third one, the surgeon said he wouldn’t be able to do anymore as the gap in my spine was too small. This last injection gave me about 6 months of relief. After that, I faced the fact that I couldn’t ramp up my medication any further, I couldn’t have any more spinal injections, and surgery was an option I was considering but really didn’t want.
I found resting all the time didn’t reduce the pain I was experiencing and instead of the pain being only in my back, it was now all over my body. Neck, arms, legs, back, feet, hands were all in pain. I was experiencing nerve pain in my arms, hands, feet and legs. I had a standing joke with a massage therapist I saw weekly. She would ask me how I was and I’d reply, ‘my nose is ok today’.
The Worst Pain
I started work with a Medicare Local and my office was in the middle of a GP super clinic. At this stage I was at the height of my pain and I had daily access to GP’s and referrals to more specialists trying to find a diagnosis and a treatment to fix my pain.
In my mind I needed a diagnosis and a cure. I had X-rays, CT scans, MRI scans and I was diagnosed with D.I.S.H. I had bone spurs in my feet and right through my spine and neck. The prognosis caused me a great deal of stress and anxiety. D.I.S.H was described by Dr Google as a progressive disease that could stay as it is then one day suddenly change to cause greater pain and immobility.
I started taking Endep for the nerve pain and this worked well, although I had to ramp up the dose to the maximum to get relief. At the height of my pain, I was also going through a really difficult divorce. Stress levels were off the scale, and sleep was non existent. I had a sleep study that showed I had 29 minutes of REM sleep overnight and in between 96 spontaneous wakings. My blood pressure was high, my blood sugars were virtually uncontrollable and my stress was off the charts.
Everything I had done in order to get a diagnosis, treat the pain with medication, rest and protect my self from further damage and pain, had resulted in with me being in pain all over, tired and lethargic, unable to walk more than 200m without severe cramping in my calves, lying down to rest and in an ever-degenerating physical condition. It left me feeling that I was doomed. After my divorce was finalised, I looked seriously at buying into a retirement village that had a nursing home attached. My doom and gloom thinking was trying to protect me. I was not seeing a future that had much meaning.
I was also taking tramadol twice a day. This reduced pain a little. It meant I was lethargic and my ability to work was quickly diminishing. I was at a point in my life that I began to see that the approach I’d taken didn’t stop the pain, and didn’t reduce it to a point that I could have a life. I couldn’t see a way out of the pain as I’d tried every treatment being offered apart from surgery.
Turning Pain Around
I got to a point in my life where I began to see that the approach I’d taken medically wasn’t going to work for me to live well. It was pointing to an outcome that didn’t end well for me. I happened to talk to a friend who lived with lots of pain, and despite this, still had an active life. I knew his injuries and pain were more significant than mine, not that comparing is at all relevant. He told me how he’d gone to the Albury Wodonga Pain Management program about 10 years earlier and that it had made a real difference for him.
I could see that he was living a life, and my doom and gloom outlook was not what I wanted. I began to say to myself *"it's better to live with pain and have a life, than have pain and not have a life at all"*. My starting point was to see that the road I was on was locking me into more pain, without a life. It was more of the same, and it didn’t end well.
I ended up making a referral to the Albury Wodonga Pain Management Program and a month or so after making the referral they contacted me to set up an appointment for an initial assessment. I turned up and the assessment took 4 hours. There were some health questionnaires and testing to check my movement, so as to give them a good understanding of my starting point. I did a medication review, a lifestyle and living activity review with an OT, and a session with a psychologist. This program doesn’t take a one-track approach to pain. It involves a multidisciplinary approach and it sets up an individual program for each person.
At the assessment I was quite disheartened as I felt like I failed at everything they asked me to do. All of the movements were quite difficult and painful, and my ability to maintain an activity was very limited. In the middle of the assessment the physio asked me to hold out my two arms straight out from my shoulders and hold them there for as long as I could. I did this and said ‘finally something I can do’.
After about 10 minutes and me not breaking into a sweat or looking like I was going to drop anytime soon he put down his stop watch and said that will do. I had broken the record and wasn’t even at the end of my capacity on this test.
During the time I was holding my arms up I was experiencing something I could do and a little seed began to germinate in my mind that went along the lines of *"well, using your body does make it stronger"*. My arms were probably the strongest part of my body as I enjoyed woodwork and specifically I had played the flute for 40 years, so holding up my arms for a long time was normal for me.
After the assessment was over, I was placed on a short waitlist for entry to the program. There was an option to be contacted to come into the program at short notice. I opted into the short notice, then the next day they phoned me and offered me a place in the program starting in 2 days time. That was the start of taking a different road.
The Road to Recovery
So you started the program straight after the assessment and didn’t have any time to think about it. What was going on in your head at the time of starting the program?
I literally didn’t have much time to think about it. I had to pack my bags and organise a few things, cancel some appointments and turn up. I remember thinking that I’d tried everything else and gosh I had I’d spent thousands on private treatments, physio, osteo, myotherapy, massage therapy... the list goes on. I was thinking, *"give it a go, do whatever they suggest, they know pain". And on the other hand, I brought with me a "Poor Me" attitude and a huge dose of scepticism. Thinking like, *"you have no idea what’s going on in me", "this won’t work, I’m different to others".
What happened during the program, and what were some of the things they did to help manage pain differently to how you were at the time?
To start with the program is made up of a multidisciplinary team of clinicians. You have a doctor who is a specialist pain clinician, an occupational therapist, a physiotherapist, a nurse, a psychologist.
The program is 3 weeks full time. You live in and go home on weekends if you can. Each day starts with a comprehensive stretch and then a walk. I started out struggling with walking and pushed on. You come back from the walk and stretch again. Then there’s an education session and hydrotherapy in the morning. More education after lunch and a gym session with more exercise. You have time for individual sessions with each of the team during the program. The education sessions are more than just learning about pain and how it’s an output of the brain, these sessions are about applying what you learn into how you do life. We did sessions on meditation and mindfulness and as part of the learning we spent time doing meditation and mindfulness. We learnt about pacing ourselves and we paced ourselves. We set our own goals and towards the end of the program we talked a lot about how we would plan to adapt our learning into a new routine at home.
During the program I reduced tramadol and came off it. I replaced the medication, and the familiar song of "pills first", with a new script. I was applying what I learnt by doing new things. I was replacing inactivity with movement and activity, and replacing stress with mindfulness, breathing and meditation. I was more social; reconnecting with family and friends that I had lost contact with during the isolation of pain. I discovered walking, hydrotherapy exercise, and took time to enjoy music and woodwork again. These new activities replaced medication and I discovered that as I tried new things, my the pain changed from being right in my face to being in the background.
Trevor's healthy life today
A lot has happened in my life since I finished the program in September 2016.
I now have a life without pain.
When I say ‘without pain’, let me clarify that. Today the pain in my lower back is a 1/10 as compared to an 8/10. It’s there, but it’s not screaming at me 24/7 and it doesn’t stop me doing anything I want to do. I organise my work in the shed by utilising lifting equipment and getting help when there’s more work than one person can handle, but pain itself doesn’t limit my activity.
I sleep a lot better, my blood sugars are good, blood pressure good, stress is gone. I have three part-time jobs. My number one job is looking after myself.
I find walking, exercise, hydrotherapy important activities in managing pain so this is a job I have to do regularly. I work as a company secretary and I work for Pain Revolution. I also volunteer with a couple of organisations on boards and a couple of others when they have events on. My life is full, and my future is bright. I couldn't have said that with conviction only a few years ago.
Joining Pain Revolution
18 months after doing the Pain Management Program I heard about Professor Lorimer Moseley and Pain Revolution. I looked them up online and discovered that this group of world-leading pain researchers and clinicians were coming to Albury as part of their annual ride.
I contacted them and volunteered to help promote the ride and the two events in Albury. I have a lot of experience in the community health sector and establishing community support programs in rural areas. This experience, my story and my passion for best services in Rural Australia made it a good fit.
I volunteered with Pain Revolution and discovered first hand that the people, their vision and their evidence-based educational curriculum is a combination that works. I’m now working for Pain Revolution to help with community engagement on their next ride in Tasmania in March 2019.
There is another key aspect of Pain Revolution I need to highlight. We have a vision for seeing that all people living in rural Australia have access to pain education, through the Local Pain Educator Program. This rigorous and comprehensive 12-month post-graduate education program for passionate local health professionals is not just education but expert mentorship to apply their learning in their communities running education events for their local community and clinicians. This program will build capacity for local communities to help people like myself to move from a debilitating place of persistent pain, to one of having a life.
A message of hope for people in pain
I started from a place of doom and gloom, unable to see above the bleak outlook of ever increasing pain combined with more self-protective behaviour. I was trying to protect myself, but it didn't help. I’ve since learnt that this type of approach locked me into a downward spiral that caused more pain and less life. I don’t beat myself up for giving it my best shot to manage pain. I hope for a time when doctors and clinicians use pain education and exercise as the first response to treating pain, for new injuries and for persisting pain. If that had happened for me I’d have avoided years of pain.
I’m now off all pain meds. Even Endep, which worked so well for my nerve pain. I adopted some new approaches to nerve pain to retrain my brain, and now I might have one or two very minor reminders of nerve pain a week. They don’t interfere with life and they tell me it’s time to go back to my number one job of looking after myself. Nerve pain will flare up when I’ve neglected walking or hydro for a couple of days or when I’ve not paced myself appropriately. I make it my focus to overdose of SIMs - fun, uplifting "safety" activities, and destroying DIMs - the "dangers in me" that keep me from enjoying the fullest life I can.
Thank you to Trevor for sharing his story, for the experience and enthusiasm he brings to our team and his invaluable perspective as someone that has lived through persisting pain, and embodies the values and mission of Pain Revolution.