I Was Born Into This
Classical Ehlers-Danlos Syndrome, a connective tissue disorder that affects every system in my body, has been present since birth. It took 42 years and finding my birth mother to get that confirmed on paper. I was adopted, and without a genetic family history, the diagnostic process stalled for over four and a half decades. By the time the diagnosis arrived in 2012, I had already accumulated roughly 200,000 dislocations and lived the majority of my adult life without any medical framework to make sense of what was happening to me.
The current count stands at approximately 360,000 lifetime dislocations and 3.56 million subluxations. Around 300 per day, ongoing. Every major joint: knees, shoulders, hips, toes, fingers, ribs, jaw.
Before All of This, I Had a Career
I spent years at PricewaterhouseCoopers as a Senior Technical Design Architect. I understood complex systems, interdependencies, failure modes. I was good at it.
Then my body became the most complex system I'd ever encountered, and the one I had the least control over.
That systems-thinking never left me. It's how I eventually built my way out.
The Pharmaceutical Years
Pain management meant medication from the beginning. My first prescription was codeine. I was seven years old. No one explained what it meant to take opioids that young, how my body would come to depend on them, how they would become both a lifeline and a prison. All I knew was that if I swallowed the pills, the edge of the suffering dulled just enough to keep going. I took them every day.
The first doctor who truly saw me was Dr Rajesh Munglani, at the Pain Clinic in March 2006. He diagnosed Classical Ehlers-Danlos Syndrome in five minutes. A lifetime of misdiagnoses, of being told I was exaggerating, of being gaslit by the medical system, shattered in five minutes. The diagnosis would not be officially confirmed for another six years, until I found my birth mother and confirmed the genetic link. But that five-minute conversation was the first time a doctor believed me.
From childhood onwards, the medication escalated as each option stopped working: paracetamol, codeine, dihydrocodeine, tramadol, and then the opioids proper.
By 2007, I had exhausted conventional treatment options. My body had developed dangerous tolerance levels. The escalation that followed was not a choice so much as a collapse of alternatives. At peak: fentanyl, methadone, morphine, OxyContin, buprenorphine, gabapentin, combined equivalent of approximately 4 grams of morphine per day. I was near-comatose around the clock. I lost years to it. I barely remember them.
I developed severe central sleep apnoea during this period. There was a 60% nightly risk of death in my sleep. I didn't know that figure at the time. I know it now.
My wife carried everything during those years. No family support. No reliable medical support. Just the two of us managing something that had no roadmap and no end in sight.
I was in a very dark place. I begged her to help me end my suffering.
2019: The Choice
In November 2019, the choice became binary: stop all pain medication, or likely not survive another year.
I also had a severe leg infection related to Classical Ehlers-Danlos Syndrome and Chronic Venous Insufficiency that wasn't responding to antibiotics. I was on an 800-calorie medically supervised diet. Everything was in crisis simultaneously.
I asked my pain management team at West Suffolk Hospital whether they knew of anyone who had successfully detoxed from high-dosage morphine at my level. They didn't.
They gave me autonomy to choose my own approach, warned me about the mental health implications, and I set myself one rule: reduce by no more than 10% every 14 days. No shortcuts.
On November 8, 2019, I cut the gabapentin cold: 2,800mg, gone in an instant. That was the opening move. Then the real war began.
The detox ran for 256 days. Continuous withdrawal symptoms, comparable to cold turkey heroin, for the entire duration. The first major reduction hit hard within days. My mental health hit its lowest point within the first four weeks. There were days I couldn't get out of bed. Somewhere around day ten I stopped knowing what was real. I developed hallucinations. Insects crawled across my skin that weren't there. I spoke to people who were not in the room. I argued with my own reflection. The temptation to take another pill was constant and logical. I didn't.
The last 100mg proved harder than the first 1,100mg reduction. I hadn't expected that.
I came out the other side with better pain control than I had on the strongest medications medicine could prescribe. I eliminated the central sleep apnoea and the 60% nightly death risk with it. I lost 8 stone in 9 months. I had not been properly conscious for years and suddenly I was.
I don't take any oral medication now. I never will again.
The Full Picture
The complete diagnostic list, because partial information tends to mislead.
Genetic & Connective Tissue
Classical Ehlers-Danlos Syndrome · Klinefelter Syndrome (47,XXY) · Familial Hypercholesterolaemia · Risk profile similar to Vascular Ehlers-Danlos Syndrome
Gastrointestinal & Nutritional
Gastroparesis · Dysphagia · Chronic Intestinal Pseudo-Obstruction · Malabsorption · Borderline Stage 3 Intestinal Failure
Pain & Musculoskeletal
Severe constant chronic pain since age 3 · Complex Regional Pain Syndrome · Benign Bone Tumours · Stage 4 Bone-on-Bone Osteoarthritis · Osteoporosis
Cardiovascular & Autonomic
Coronary Heart Disease · Chronic Venous Insufficiency · Postural Orthostatic Tachycardia Syndrome · Structural Baroreflex Failure · Square Wave Haemodynamics · Severe (Global) Dysautonomia · Orthostatic Hypotension (Supine) · Orthostatic Hypertension (Standing) · Post-Prandial Hypotension · Historic Long QT Syndrome
Neurological & Sleep
Historic Central Sleep Apnoea · Narcolepsy · Chronic Fatigue · REM-predominant central hypoventilation · Hypoxia
Immunological & Metabolic
Mast Cell Activation Syndrome · Metabolic Syndrome
Complex Regional Pain Syndrome is clinically ranked as the most painful condition known to medicine. I developed it after two severe leg infections. I coped with it because by that point I was already accustomed to constant severe pain from bone and soft tissue breakdown. The CRPS pain was familiar territory. I didn't realise I had broken my shoulder in 2018 for six weeks. The pain was no worse than usual.
The GI Reality
Since August 2020 my gut has operated on a protocol I've had to build and rebuild as the reality changed.
From August 2020 to January 2024 I was on a liquid-only medical nutrition protocol. In theory, manageable. In practice it was a grinding cycle of malnutrition, dehydration, and weight loss exceeding 15%, punctuated by long hospital admissions. The protocol wasn't working. I stopped it.
In January 2024 I moved to what I call the snake diet: one meal a day, low carbohydrate, followed by a 48 to 72 hour fast to allow my GI tract time to process the nutrition. Sometimes the fast extends to 96 hours. Occasionally up to 12 days. Providing I stay hydrated, I can manage this without hospital admission. That is the current operating model.
It does not always hold.
In April 2024, three weeks before RideLondon, my gut shut down completely. Not by choice or miscalculation. It simply stopped. Seventeen days without any nutrition. Twenty-one days in hospital that followed: malnutrition, dehydration, significant muscle loss. I was discharged in no condition to ride 63 miles.
I rode them anyway. Pre-ride HRV of 11ms. One hour 38 minutes of sleep the night before. SpO2 at 92%. Four hours at threshold. The system held.
Because I cannot absorb standard supplements, I've designed my own delivery system using high-dose raw ingredients. Daily: approximately 60g raw turmeric root with black pepper. The piperine in the pepper increases curcumin absorption by up to 2,000%, which is the only reason the anti-inflammatory effect reaches therapeutic levels in a gut like mine. Approximately 50g raw ginger as a pro-motility agent to fight Gastroparesis and Chronic Intestinal Pseudo-Obstruction. 300ml beetroot juice for blood pressure and cardiovascular function. These are not supplements. They are primary interventions.
The conventional medical pathway for someone in my situation is tube feeding, Total Parenteral Nutrition, or ileostomy. I have avoided all of it. Not through luck. Through active, systematic management of every variable I can control.
There is no validated clinical protocol for Classical Ehlers-Danlos Syndrome-related GI failure at this severity. I have built my own. It is not comfortable and it is not stable. It is the best available option.
Not Compensation.
Substitution.
My blood pressure doesn't regulate. It operates in what I call a Square Wave, snapping from stroke-level hypertensive crisis at 198/141 mmHg to shock-level hypotensive collapse at 67/42 mmHg and back again in seconds. My connective tissue is so unstable that my joints have subluxed or dislocated over three million times. My gut is partially paralysed. I cannot absorb oral medication reliably.
In this space I stopped being a patient and started being a systems analyst.
What I've built is called Prosthetic Physiology. The formal definition: a system in which conscious, behavioural, mechanical, temporal, nutritional, environmental, and data-driven strategies actively replace failed biological reflexes.
I maintain continuous situational awareness of my physiological state. I do not rely on symptoms as warning signals because my physiology does not reliably signal distress in real time. I anticipate instability before it occurs. Decision-making replaces autonomic reflexes.
I use continuous movement as a circulatory support system. Without the muscle pump of my legs moving, blood pools in my lower extremities and my pressure begins its violent oscillation. Stillness is not rest for me. It's a haemodynamic gamble. I ride to stay pressurised.
Effort, rest, nutrition, heat exposure, and recovery are all managed within defined physiological windows, scheduled in advance. I do not wait for symptoms to dictate action. Prevention is the only viable strategy.
I treat fuel intake as a controlled infusion, not a meal. My safe glucose corridor is 4.8 to 5.8 mmol/L. A reading of 5.9 is my smoke detector: the precise metabolic threshold where my system triggers a panic adrenaline surge. When that number appears, I deploy heat therapy and micro-doses of Vitargo immediately.
Heat, cold, posture, and compression are active regulatory tools. A 45-minute steam or sauna protocol drives HRV rebound from below 20ms to above 60ms. The environment is not something I endure. It is part of how I regulate.
Because my warning symptoms are absent or unreliable, I rely entirely on objective physiological data. Every 10 miles during a ride I receive data summaries via bone conduction headphones. Heart rate, power, pace, cross-referenced against my 80% output ceiling. I do not trust how I feel. I trust what the numbers say.
The Sonic Shield. I wear Shokz OpenRun Pro 2 bone conduction earphones on every ride. They sit against the cheekbones, leaving the ears fully open for traffic and situational awareness. When pain spikes, the brain becomes obsessed with it — every nerve signal amplified. Aggressive, structured music interrupts that loop. The rhythm gives the brain something else to hold onto. Three drum loops at a time. Then three more. Then three more. When joints are slipping and nerves are screaming, rhythm becomes survival. This is not motivation. It is a pain management protocol.
The 80% Rule
In elite cycling, pacing is about saving something for the sprint. For me, it's the difference between a successful ride and a multi-systemic collapse.
I never allow myself to exceed 80% of perceived maximum capacity. For a healthy athlete the remaining 20% is where gains happen. For me, that 20% is where my autonomic nervous system loses its ability to buffer stress, triggering inflammatory cascades and autonomic shocks that can take weeks to resolve. I am not chasing a personal best. I am maintaining systemic continuity.
I also operate by what I call the Lag Factor: I never plan based on how I feel today. I plan based on yesterday's data, because the delayed impact of exertion in my body is as certain as the exertion itself.
What Cycling Did
In December 2022 I was ending my 19th year as a full-time wheelchair user. Three months earlier I'd been up Snowdon in that wheelchair for Pulling Together Up Snowdon. On June 16, 2023, I rode the BHF London to Brighton, 54 miles in 4 hours 45 minutes on an old self-adapted hybrid bike. Three months after that I rode 197 miles over 4.5 days from Great Yarmouth to London for Race the Ship. I clocked 1,800 miles that year. I'd begun 2023 having to rebuild my leg muscles, learning how to adapt my bike so I could ride with my physical constraints.
In under two years at age 58, my VO2 max went from 30 to 55. My resting blood pressure came down from 198/141 to 108/61.
For someone with coronary heart disease, structural baroreflex failure, and square wave haemodynamics, those figures have no straightforward medical explanation. I'm not going to offer one beyond the system I've described above.
The riding is not separate from the medical management. It is the medical management.
I ride because it is the only time I feel free. Pain is my operating environment, not my enemy.
In 2026, through persistence and consistency, I've started working as a freelance Accessibility and UX Consultant. It's a natural convergence: two decades of enterprise IT at PricewaterhouseCoopers, combined with four and a half decades of lived disability and daily use of accessible technology. That combination gives me a perspective most IT professionals simply don't have, because they've never needed to.
Wheels for Tenacious continues to grow. The initiative began with Pulling Together Up Snowdon in 2022, the event where Race the Ship was conceived on the journey home. In September 2025, a crew of six completed the 144-mile Cantii Way in Kent over two and a half days. Each event has confirmed the same core principle: disabled and non-disabled riders sharing the same challenge at the same scale as equals. In September 2026 comes RideTogether 200: 221 miles, Liverpool to Cardiff Bay, the UK's most inclusive long-distance cycling event.
Through my work with Wheels for Tenacious I've also volunteered as a ride leader for Try Cycling, a new initiative launched by Nene Park. Over the coming weeks and months I'll be completing first aid training, bicycle maintenance, and ride leader qualifications. The same person who spent 19 years in a wheelchair will be leading others onto bikes for the first time.
In May 2026 I'm riding London~Wales~London, 407km targeting 20 hours. Three weeks later, the Yorkshire Divide: 450 miles, 30,000 feet of climbing, 138-hour limit. In 2025 it had no finishers with a chronic illness.
I intend to be the first.