About Me
2.92 Million
Subluxations
Knees, Shoulders, Hips, Toes, Fingers, Ribs, Jaw
343,000
Dislocations
I Was Born Into This
I didn't develop a chronic illness. I was born with one.
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 half a decade. 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 343,000 lifetime dislocations and 2.92 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.
The Pharmaceutical Years
From childhood onwards, pain management meant medication. I worked through almost every option available — paracetamol, codeine, dihydrocodeine, tramadol — escalating as each stopped working or the side effects became unmanageable.
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.
Conquering My Fears: Overcoming Opiate Dependency and Pain Medication Withdrawal
In November 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.
I had experienced opiate withdrawal before, but detoxing from 1200mg of slow-release morphine and 2800mg of gabapentin was the toughest battle I had ever faced. But as it turns out it was just the support act!
When I asked my pain management team if they knew of anyone who had successfully detoxed from high-dosage morphine, they didn't. However, they granted me the autonomy to choose my own path and warned me about the potential impact on my mental health. I promised to reduce my medication intake by no more than 10% every 14 days.
Overcoming an intense withdrawal from pain medication, a gruelling, brutal experience that spanned over 8 months and 2 weeks. 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.
The first 1100mg reduction was brutal, pushing my mental health to its limits, causing pain flare-ups, and leaving me without relief. There were days when getting out of bed was impossible, and the temptation to take another pill was overwhelming.
My mental health reached a breaking point within the first 4 weeks, forcing me to prioritise my resilience and well-being. I mistakenly thought that once I reached 100mg per day, the hard part was over. However, the last 100mg proved to be even more challenging.
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. Today, I still experience constant severe pain, but without the side effects of strong pain meds. My journey has taught me the importance of tenacity and the power of resilience in the face of adversity.
Interview in November 2022 for NHS on Opiates and Pain for West Suffolk Hospital, Pain Clinic
Heading
Navigating the Uncharted Territory of Ehlers Danlos Syndrome and Gastrointestinal Issues
The Challenge of Gastrointestinal Complications
My journey with Ehlers Danlos Syndrome has been a constant uphill battle, particularly in managing the myriad of gastrointestinal (GI) issues that have severely impacted my life. As there are no well-validated national or international guidelines for managing EDS-related GI symptoms.
My journey has been fraught with challenges, particularly in managing the severe gastrointestinal (GI) issues that include dysmotility, dysphagia, dysfunction, GERD, gastroparesis, chronic intestinal pseudo-obstruction (CIPO), SIBO, intestinal permeability, malabsorption, malnutrition and a host of food intolerances.
Since August 2020, I've been on a medical liquid-only diet due to my severe gastrointestinal issues. My gut has come to a complete halt, and I'm fighting to get things moving again.
Despite the challenges this brings, I am determined to find my own path without succumbing to tube feeding or other invasive procedures.
Defying the Odds: My Battle Against a Dire Prognosis
My gastroenterologist has warned me of a poor prognosis, which includes tube feeding, Total Parenteral Nutrition (TPN), ileostomy, bowel resection and complications like sepsis, and recurrent infections.
Despite these grim prospects, I'm determined to forge my own path and avoid these invasive interventions.
I must also cope with the daily challenges of constant severe pain, dislocations, subluxations, chronic fatigue, brain fog, Mast Cell Activation Syndrome (MCAS), Postural Orthostatic Tachycardia Syndrome (POTS), dysautonomia, Complex Regional Pain Syndrome (CRPS), Chronic Venous Insufficiency (CVI), early-onset osteoarthritis, central sleep apnea, and narcolepsy.
My Fight Isn't Over – It's Transformed
I won't pretend I'm magically cured. It was a tough road, and it still is. My journey has been full of highs and lows, disappointments, and breakthroughs. The biggest difference? Now, I carry the pain, not the other way around.
Before, pain was me. It controlled every decision, every thought. Now it's a challenge to overcome, not my entire existence. Something as simple as sailing (which before would've been unthinkable), allows a few blessed hours where the pain just vanishes. That's the true miracle.
Chronic pain has been a dark, relentless companion. But the fight changed me. It made me realise pain doesn't get to define who I am.
The Raw Truth:
Finding Strength Beyond Positivity
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," and I want to explore alternative ways of finding strength in our darkest moments.
My experiences, including detoxification and coping with severe pain and withdrawal symptoms, taught me that "hope" isn't always enough. Sometimes, we need to dig deep and find the grit and determination to push through. I learned to tell myself that failure wasn't an option and that I needed to "suck it up" and be tenacious.