"Cycling has become my way of saying thank you to my incredible Pain Management Team at West Suffolk Hospital. Their support and the skills they've taught me have truly changed my life. 🙏🚴♀️"
David Bainbridge, Disabled Cyclist
I'm What A Person With An Invisible Disability Looks Like
In 2012 after 42 long years of unexplained constant severe pain, I finally received a diagnosis: Ehlers-Danlos Syndrome (EDS). This diagnosis empowered me, providing the knowledge and answers I needed to build a new normal for myself.
My life has changed, and I've completely accepted the loss of the life I once knew. Through grief and acceptance, I've learned to manage my limitations and prioritise pain management, quality of life, and mental health resilience. I strive not to give my pain a voice and focus on what truly matters.
Throughout my journey, I've faced disbelief, accusations of laziness, and even doctors denying the existence of EDS. With no help or support, I've had to navigate and self-manage my complex symptoms. I've tried various psychological therapies and seen hundreds of medical professionals, only to be told my pain was "all in my head."
My journey has been anything but straightforward, as I've faced a wide range of physical and mental obstacles, from gastrointestinal and cardiovascular to chronic pain and fatigue.
I've become intimately familiar with pain.
My Journey to Empowerment
For fifty-four years, I have experienced severe pain every single day, to the point where I can't remember what it feels like to be pain-free.
My first brush with pain – the real kind that sticks with you – happened when I was just a kid. Ever since then, pain has been this lurking shadow that's always trailed me.
From age seven onward, life was a marathon of pills, appointments, and a whole lot of days the world blurred by while I fought off the ache.
Now, trying to put that level of pain into words...it almost cheapens it. Pain isn't something you think about rationally; it burrows into your very being.
I've always described my pain, as if I'm in a room that's almost dark and there's a light in the corner and that light is flashing and getting more intense and no matter how much I concentrate, I can't help but look at it. And for the majority of my life, I ran from that pain. I blocked it out.
I tried to ignore it and that never worked, trying to numb it with an ever-growing mountain of medications. And for four and a half decades, those meds were my entire life.
It's scary how easy it is to slip from normality to an unending cycle. Fentanyl. Methadone, Oxycodone, Morphine, dihydrocodeine. Pain Doctors tried to help me, it was the only answer, the only escape from that blinding light.
I tried to ignore it and that never worked. It took a good six to eight months before I realised that I was in a deep depression. I was taking massive amounts of opiates. I shouldn't be here, I don't think, with the amount of fentanyl and methadone I took. I was almost comatose 24-7. I couldn't stay awake.
I was in all this pain and my mindset was, I need painkillers. They're not working. I need more painkillers.
I lost years to a drug-induced blur; I barely remember them. It's no exaggeration to say I shouldn't even be here right now.
Overcoming Opiate Dependency and Pain Medication Withdrawal
Living with such intense pain has made me remarkably resilient; I didn't even realise I had broken my shoulder in 2018 for six weeks, as the pain was no worse than usual.
In 2019, I faced a terrifying choice: stop taking high-dosage slow-release morphine and all my pain meds, or face the reality that I might not live another year.
At the same time, I was dealing with a severe leg infection related to Ehlers-Danlos Syndrome (EDS) and Chronic Venous Insufficiency (CVI) that wasn't responding to antibiotics, as well as adhering to an 800-calorie-per-day medically supervised diet.
Overcoming an intense withdrawal from pain medication, a gruelling, brutal experience that spanned over 8 months. Reducing my dosage by 10% at a time, I endured continuous withdrawal symptoms that were comparable to going cold turkey with heroin for 256 days.
Staying positive in such trying times wasn't easy, but I forced myself to keep going. I never want to relive this experience, but I learned invaluable lessons along the way.
A new Normal: Coping without Pain Medication
Today, I still experience constant widespread severe pain, but without the side effects of strong pain meds.
I don’t take any medication now and my pain control is better than it was on the very strongest pain meds, and I now enjoy the highest quality of life.
My journey has been one of overcoming adversity without relying solely on the concept of positivity. I believe that there's more to resilience than just staying positive.
My Ride to Resilience: Cycling Through Pain and Finding Strength
I started cycling as a way to say thank you to my pain management team at West Suffolk Hospital. They helped me so much, and I wanted to show them that their support and the pain management skills they taught me were making a real difference. Plus, the ongoing medical battles I face are tough.
Pushing myself hard with cycling helps me prepare for those challenges, both physically and mentally. It's a way to train my mind and body to overcome anything that comes my way.
My Cycling Adventures
For context: At the time I came up with the idea for 'Race the Ship' on 25th September 2022. It was and had been physically impossible for me to ride a bike for over a decade and it's extremely painful. Since then I have undertaken many more endurance rides, clocking up a whopping 1800 miles in 2023.
Living with significant physical and mental conditions means every day is a challenge. Using a wheelchair is a part of my reality, but it doesn't define my spirit. When I decided to fundraise, I knew it wouldn't be easy – in fact, it would likely bring additional pain, fatigue, and discomfort. But I believe in showing the world that even with limitations, we can achieve extraordinary things.
After 'Pulling Together Up Snowdon', I craved an even bolder test – one focused on a mixed-ability team working as equals to conquer the seemingly impossible. That's how the idea for 'Race the Ship' was born.
We'd race the Tall Ship Tenacious 197 miles from Great Yarmouth to London. This was no easy feat, especially for someone like me who hadn't cycled in a decade due to my conditions. We'd use any human-powered means (plus electric pedal assist when needed), proving that teamwork and inclusivity can conquer any challenge.
Choosing to undertake this ride was like knowingly opening Pandora's box of discomfort and pain, fully aware of the severity of the consequences. The ride was not simply a feat of physical endurance but a test of the mental resilience to deal with the repercussions of every decision made.
Finished in 4 hours 45 minutes
Horrible weather, freezing cold, heavy rain, horrible headwind and lots and lots of standing water and just to add to the fun horrific sciatic nerve pain 20 miles from end after right hip subluxation (Too cold = Spasm's) didn't go back in cleanly
Definitely earnt my stripes on this ride!
I've experienced first hand the transformative power of support, love, and understanding in shaping a child's life. That's why I'm dedicating my sweat, determination, and passion to support Become—the leading charity for children in care and young care leavers in the UK
Chase the Sun is a non-competitive ride, open to all — with no rules, route signs, timing or medals. It is an annual physical, motivational and navigational challenge, with the goal of riding your bike from sunrise to sunset on the longest day!
BHF London to Bridghton 2024
Finished in 4 hours 14 minutes
Continued to Shoreham and up the Down's Link to Christs Hospital riding 76.3 miles in 6 hours 33 minutes with just brief stops for toilet breaks.
Round the Harbours
Graham Strudwick and I completed the ride despite the 35mph headwind most of the way around.
BHF London to Brighton Off-Road
I thought it would be a blast to tackle both the road ride in June and the off-road one in September! The forecast promised dry weather, but surprise! It was a mud fest! Honestly, it was the toughest, most challenging ride I've ever conquered. Those first 30 miles were brutal, even harder than RideLondon. Riding with a torn rotator cuff? Definitely made things interesting (and painful!), especially with all the bumps and pounding on the descents, crashing into the hedge on the final descent and landing on said shoulder was not a highlight. So proud of myself for completing it.
Bikepacking Marriots Way and Bure Valley
A mixed-ability team of cyclists embarked on an inspiring journey from October 11-13, 2024, cycling 92 miles from the tall ship S.V. Lord Nelson (Nellie) in Barry to the tall ship S.V. Tenacious in Sharpness, finishing at Gloucester Quays, the location of Jamie McDonald’s (aka Adventureman) static bike non-stop world record in 2012.
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