Coast to Coast challenge raises awareness of pain
In September 2023 two fundraisers with lived experience of pain undertook an epic 144 mile ride from one side of the UK to the other, with the aim of highlighting the silent epidemic of persistent pain in this country.
We caught up with Lee Vaughan (49), a Duty Manager at a local Leisure Centre from Sheffield and Niki Jones (52) from Brecon in Wales who is a Pain and Wellbeing Coach, Community Shop Assistant, Patient Partner for several research projects and Vice Chair of the Footsteps Festival to find out about their experience.
Tell us about the challenge – what was the idea and how did it come about?
Lee: The idea came about following the Flippin’ Pain Community Outreach Tour in May 2022. The Lived Experienced riders benefitted so much from the experience of the peer to peer support, that we wished to build upon it and make the event the start of something rather than a one off.
Niki This was born from the Flippin’ Pain Outreach Tour – which includes a peloton of pain experts who ride from place to place on the Tour – I participated in the Lincolnshire Tour of 2021 and most of the Teesside Tour in 2023. On the latter tour there was a larger group of people with lived experience of pain and we wanted to keep the momentum and the peer support – the idea was born!
What motivated you to participate in this charity bike ride?
Lee: The motivation was to use the challenge to raise awareness of persistent pain, raise important funds for Pain Concern, but also to challenge ourselves to something that would once have been deemed incomprehensible and impossible. I was once told by a GP that cycling would not be a suitable activity for me because of my back pain. Learning to understand pain in general, and most importantly my pain, has been the key to changing my life and using the limited energy I do have to engage in activities that are value driven and self fulfilling has been crucial.
The natural reaction to pain and fatigue is to stop. This challenge was about giving people hope. To demonstrate that the boundaries we are often set are there to be nudged, and that with self-compassion, increased understanding of pain and great peer to peer support, boundaries can be explored with care and nudged with mindful caution. We can live well with pain when we begin to understand that ‘Everything Matters when it comes to Pain’ (Flippin Pain)
Niki: Cycling has become an important part of my life and wellbeing – but I don’t have anyone else to ride with, which is usually fine, but my motivation can lapse at times – having a big challenge to aim for and train for gives me the impetus to get training and riding. However, more importantly, raising awareness about the large numbers of people who live with pain and knowing the lack of understanding and support they face, I find it so vital to keep showing people that there is hope, that there are more avenues of support than many are aware of, and that things can change for the better.
Have you participated in any other charity rides or cycling events before?
Lee: Before February 2023 I had not cycled since I was 16yrs old, around 33yrs. As pain slowly took over my life I was advised it wasn’t a suitable activity. I have never taken part in charity bike rides or events like this before this year.
The thought of simply sitting on a bike, the rigidity of the riding experience, the danger of the roads and aggression towards cyclists today, the fear of the big hills that exist in Sheffield and the possibility of riding somewhere and becoming stranded if my pain became too much were very hard to overcome. Signing up for the Flippin Pain Peloton back in February, whilst going through a two month flare was an act of impulse. I don’t know why I did it, my wife sat in horror at the thought, but that moment changed the course of my year, my journey with my pain, and ultimately my life. With a value driven goal I discovered my motivation again. I discovered that giving myself something so incredibly meaningful, despite being monumentally daunting, began to ease my pain experiences – even before I’d sat on a bike.
Niki: I was never a cyclist as a kid – bikes have always been transport, nothing else, and usually a pretty last port of call transport. However, in 2020 I was introduced to e-bikes on a course – and when Lockdown happened, I got an old bike out of a shed and started going out, 5km to start and then more and more. At the time I was struggling with a very gnarly opioid taper as well as a spicy nervous system – I videoed my experiences in a vlog, how I learned to cycle, to work within my boundaries and progress carefully. The mindfulness aspect was very important and the sheer joy I started to be able to access at a very hard time in my life. In many ways cycling saved me.
I was asked on the 2021 Flippin’ Pain Outreach Tour which was my first experience of a group charity ride and it was honestly one of the best experiences of my life. I was so happy to return in 2023 even though my fitness levels were not so good.
How did you train for this ride? Can you share some of your training routines?
Lee: With a new understanding of my pain and myself, I began training in a way that was absorbed in self-care. I didn’t even contemplate riding outdoors for the first 6 weeks. I started gently by allowing my body and mind to have the experience of being on a bike in a completely safe environment. Using the stationary bikes in the gym was my starting point, and I began by gently riding for 45 minutes. I instantly found that during that 45 minutes my pain became insignificant in that moment, and that my body did not seem to react in the way I expected it to, in the way I was told it would. I spent 6 weeks in the gym slowly increasing my time in the saddle and slowly monitoring my development. I began to lose weight, feel good about myself again, and I began to look forward to the next session.
Transitioning to a real bike was terrifying. A friend loaned me a bike and in early April I planned my first experience back on the roads. Everything went wrong. The chain came off dozens of times, I couldn’t remember how to work the gears, the first hill nearly burst my lungs. However, I ensured that my first trip was only one way and my family were waiting at the destination. I removed one of my fears. I also ensured the terrain was reasonably flat, although that’s very difficult in a city built on seven hills.
The experience made me want to explore my boundaries. Over time I learned to ride the bike efficiently and I began to fear much less, apart from hills. Training was centred around rest periods. Any body needs recover time. I slowly learned to make the rides a journey, a mindful experience. Stopping to take pictures, make videos, allowed me to pace but also take in the world around me and allow it to help me.
After the Peloton in May, I kept going. I signed up for the Cyclone Tour (65 miles) and the London to Brighton Ride (55 miles). However, in the two weeks leading up to this challenge I flared. This was the hardest part of all.
Niki: All my training rides are documented in my training Vlogs which can be seen on YouTube. I knew I had to be fitter than I was, so training was vital – but also that riding in a group was a different experience than alone – and that I tend to push more on my own. I aimed to be comfortable cycling 50km before I went – but I also commuted to work on my bike, which although it was only 3km each way, still had an impact on my fitness level as I pushed harder each time. I live in Bannau Brycheiniog so no lack of big hills to train on! I interspersed my training rides with yoga and I walk a lot every day as I have horses to care for. I was systematic and committed – “present day Niki” talked a lot to future “Coast to Coast Niki” as a way to motivate myself!
What challenges did you come across during the ride? What did you do to overcome them?
Lee: I think the biggest challenge was always going to be fear. Niki and myself had many chats supporting each other before the event, managing our fears and our
event, managing our fears and our expectations. In a sense a lot of the psychological work was done beforehand.
‘I am in awe of the resolve and enthusiasm of Lee and Niki to push the agenda for a better understanding and better outcomes for people affected by chronic pain. Like others, pain has robbed them of so much, but they are now able to balance self-care with living full, active lives. Their recent successful coast to coast ride was a generous and much needed fund-raising boost for us at Pain Concern, but more than that it was an inspiring example of what some people are able to achieve despite pain. Not everyone with chronic pain will aspire to cycle the width of the country, but I hope everyone can find inspiration in what Lee and Niki have achieved and channel it towards something they want to do.’
Richard Pell, Pain Concern
On the ride there was always the challenge of self-care. We needed to be constantly listening to our bodies, and pacing was a huge factor in this. It wasn’t a race, it was an experience. It was also important to work as a team as we all had moments where we needed support.
Personally, I experienced a new pain. From mid-afternoon on the first day, I suffered terrible sharp pains on the outside of my left knee. At some points I was simply carrying my left leg and peddling only with my right. There were some really tough moments for me. The team were amazing. When I dropped back from them all, they knew what I was doing and why, they knew I had to be allowed to find my way through. Occasionally they would drop back and check in with my, keep me supported and offer encouragement.
I used breathing practices, body scanning and self-affirmations to calm the situation and manage the discomfort. The pain came and went over the three days, and has been pretty much non-existent since I finished. The other obstacle was the fatigue. It was exhausting and also exhilarating – all of which drains the body and mind. We rode as a team, we supported as a team, and we conquered as a Team.
Niki: The biggest challenge was always going to be mental – cycling is as much a headgame as it is physical – much as living with persistent pain is. Reducing fear of the distance, the challenge and having the confidence I could complete needed a lot of psychological work in the months beforehand and during the ride. It was easier during the ride as we all had each other to support – showing the huge impact of peer support. But knowing when you needed a pep talk and when someone else did was an intrinsic part of this. Allowing others to support you is not always easy, but a shared goal makes this easier.
Did you have any personal goals for this ride? If so, what and were they achieved?
Lee: The goal was to get from A to B. It didn’t really matter how. If we walked that was OK, if we needed extended rest that was OK, If we needed to ride within ourselves that was OK. If we used our knowledge of pacing we were always going to make it.
Making this a memorable and positive experience was most important. There is hope and we all can achieve. We can set and also nudge our boundaries and expectations, not society. We are brave and courageous people because we awake each day and face our difficulties. However, our bravery can also be our downfall. To complete this challenge was the ultimate test of self-management skills, and of peer to peer support.
Niki: My goal was to complete of course – but it was also to have the courage to stop if I did need to as well. Sometimes we push ourselves too much, through fear of failure, of over commitment. While this was to be a big physical and mental challenge, I did not want to stress my body so much that I felt “broken” afterwards. Living with persistent pain means we sometimes have to make different and hard choices, and it’s not always easy knowing where or when to make them – we need to push boundaries, but with care and support.
Completing the ride – 144 miles – feels amazing, but I’m immensely proud of myself for pacing my activity and making the right choices to ensure that I was able too. I chose to walk up some of the hills – my bike’s gears are not that great for climbing (use the tools you have!) but when going up Hartside I knew the last mile or so was on a main road and I didn’t want to walk that – so I paced myself up the off-road sections by walking at times, which ensured I had the energy to ride the main road section without exhaustion.
What were the highlights of the challenge?
Lee: This is such a difficult question because the whole thing was an amazing experience. The highlights were the people that rode, the friendship, the support network and the sheer strength of character shown by the group. A personal highlight for me was climbing Hartside. A 1903ft climb spanning a distance of 4.3 miles.
The agreement was that we climbed hills our way and regroup at the top. On this particular hill I established a rhythm, a 4 beat count. It was almost musical in format, but it was designed to managed the peddle stroke and to also manage my breathing. I had worked on it in training to lessen my fear of hills. I never looked for the summit, I looked for the next peddle stroke, I rode within myself and maintained my rhythm, my cadence, my breathing – I was pacing myself mindfully.
It was exhilarating, as I astonished myself with what I was doing. I was riding up a huge hill, but I was using self management strategies to ease fears and manage physical output. I felt like I was leading the Tour de France, it was an incredibly emotional part of the journey and for the first time in a long time I genuinely felt proud of myself.
At the summit I sat alone for around 10 minutes in amazement of not only what I had achieved but also at the stunning scenery. At that moment I struck up a brief conversation with the 10yr old me. The little boy who lost his dad and spent his life punishing himself from there on. The little boy who grew up with no confidence and deeply afraid of the world and his future. The little boy who’s grief and fears still drive my pain today. For a brief moment I also looked to the sky, ‘look at me dad, look at me now – that was for both of us’. I haven’t shared this before, and I didn’t talk about it at the time. But, in writing this, it now feels right to share it.
Niki: It was all a highlight! But the thing that really sticks out to me was the pride I felt in all our group – each met and overcame so many different challenges in that time, and all with grace, kindness and compassion. Truly a group of fantastic people.
Is it too late to support the cause you’re riding for?
Lee: It’s not too late at all. We are leaving the page open for a while yet. We targeted £1000, and we are nearing £2,000. We hope the publicity around the challenge will keep the support coming.
Niki: Thank you SO much to everyone who has supported us in raising so much more than we hoped – we are so grateful.
Do you have a message for other riders or anyone thinking about participating in a charity ride in the future?
Lee: Niki and myself have spoken for long periods about how cycling is such a brilliant metaphor for self-management. Everyday we face hills, but they can all be climbed. As long as we climb with self-care and self-compassion; as long as we climb at our own pace and stick to our own rhythm, never looking for the summit just looking for the next step or peddle stroke; take rests along the way, it’s OK, it’s part of the strategy, life is not a race it’s a journey. The summit will come as long as we keep moving forwards at a pace that is kind.
At the summit look back and take time to reflect on the achievement, look at what you did, and remember how you did it. Remember this for next time. On the descent is where the greatest care is needed. We are feeling good, but we must not push. We must cover the brakes constantly and not lose focus of self-care, for the next hill will come around the corner based on how you descend and how you manage the plateau. Take great care at the top and going downhill as this part of the ride will dictate how many hills you face and how big they become.
Niki: To me, these rides have been so important – on so many levels. One thing that stands out to me is how it’s given me confidence in my body – and my mind. When you live with persistent pain, your relationship with both can become complex – when your body hurts you can come to resent or fear it. Being able to do something so physical and mental and succeed has really changed my relationship with my body and I am so very grateful for that. For 16 years I could barely walk a mile, in the last 5 years I have worked hard to change that and I am daily amazed and grateful that I can do this.
While I understand that 144 miles might seem daunting, I’d offer the thought that challenges are individual – and equally important and to be celebrated. One person’s front gate might be another’s Everest – equal courage, equal celebration, equal worth.
