From Begging for Amputation to Finding Hope: My Journey with CRPS
'I can't live like this, just take it off.' Those desperate words, screamed through tears with a raw voice, echoed through a hospital room in February 2018. My left arm had transformed from a limb into a burning, twisted tormentor attached to my body. I would have done absolutely anything to make the pain stop. This agony was caused by a neurological condition called Complex Regional Pain Syndrome, more chillingly known as the 'suicide disease'. When I received my diagnosis at the start of 2018, I genuinely believed my life was over. What I didn't know then was that my life would eventually become full and hopeful, even while living with this debilitating illness.
A Life Turned Upside Down
Before my diagnosis, my life was wonderfully ordinary. I lived with my parents, adored my career as a teacher, and spent countless happy hours walking my beloved dog, Bessler. My primary concern was supporting my mother as she bravely faced stage 4 non-Hodgkin's lymphoma. We were determined to maintain normality despite her illness. However, everything began to unravel in the autumn of 2017. I started feeling persistently run-down and was diagnosed with a respiratory infection.
A prescribed medication for my throat triggered a severe anaphylactic reaction, landing me in intensive care. There, a complication with a cannula led to a further serious infection. This was treated with multiple rounds of different antibiotics and surgeries intended to clean my hand from the inside, but it never truly healed. My hand would swell, change colour dramatically, and radiate incredible pain. I was utterly confused, and initially, so were the doctors. At just 24 years old, I felt my future had been stolen.
The Unrelenting Grip of Pain
The constant pain became uncontrollable. It felt like millions of furious ants were crawling incessantly up and down my arm. Even the slightest breeze against my skin was enough to make me scream in pure agony. The pain soon consumed every thought, forcing my teaching career to a complete halt. With so little understanding of what was causing my suffering, I was passed between different doctors, wards, and medical teams without any resolution in sight.
Finally, in January 2018, I received the diagnosis: Complex Regional Pain Syndrome. Doctors explained I likely faced years of pain and rehabilitation ahead. Yet, it was discovering this condition's grim nickname—the 'suicide disease'—that sent me into a devastating emotional spiral. I spent endless hours in hospital beds and psychiatric units, desperately trying to come to terms with my new reality. I was distraught and completely unable to imagine any kind of future for myself.
Medical professionals warned that amputation could potentially make matters worse, as the pain might spread or manifest as 'phantom limb' pain. But on that desperate February night in 2018, the pain in my arm was so severe and relentless that I genuinely contemplated taking matters into my own hands—finding something sharp to end the nightmare myself. In that darkest moment, I would have traded anything, even a part of my own body, for release.
A New and Unexpected Paralysis
My situation deteriorated further in September 2018. I woke from another operation on my hand to discover I could no longer move the lower part of my body. Doctors were uncertain if this paralysis was triggered by the earlier botched cannula insertion, but the outcome was unequivocal: I was now paralysed. My life, once defined by movement, independence, and purpose, had changed forever.
By 2020, I had hit rock bottom. Hospital wards had become my permanent home as I trialled multiple treatments, endured endless physiotherapy appointments, and faced a profoundly uncertain future. The pain remained a constant, unwelcome companion.
The Turning Point: A Silly Video
Then, in March 2024, while on a neuro-rehabilitation unit, a seemingly insignificant moment changed everything. I sent a silly, lighthearted video to my parents of me lip-syncing in my bathroom to an audio clip from TikTok of a woman giving a swimming lesson. At the time, it felt like a small decision, hoping at most to give us all a much-needed laugh.
Having accidentally set the video to public, views and comments from people across the globe began flooding in. To my astonishment, most showed genuine interest in me and my condition. I started responding, and for the first time in years, I felt connected to the outside world. The more I shared, the more empowered I became as my online community grew. I realised I wasn't alone; countless others were fighting similar diagnoses and navigating comparable journeys.
Building a Community and Finding Purpose
While my social media presence flourished, I was simultaneously learning to survive the daily reality of life as a disabled person. The pain was still a constant presence, but creating content and sharing videos became an unexpected refuge. It was a powerful way to reclaim a sense of control during a period when so much felt utterly beyond my grasp.
I still can't quite believe I now have millions of followers on TikTok and Instagram. I am immensely proud to use this platform to show people that even when life takes a radically different path, there can still be profound joy and hope. This was the very message I desperately needed when first confronting my new reality. It was a tremendous honour to win Sense's 'Digital Voice of the Year' Award, and I plan to continue challenging stereotypes and building supportive communities through my posts.
A Message of Hope and Resilience
I know that receiving a diagnosis of a debilitating illness is terrifying. It is perfectly okay to feel lost, scared, or even angry—your entire world has changed, and it takes time to grieve the life you thought you would have. But I promise you, this is not the end of your story; it is simply the beginning of a different chapter.
Through time, adaptation, and developing coping strategies, I have found immense strength. I have learned to coexist with pain rather than be defined by it. My life in a wheelchair has brought incredible experiences I never anticipated, from riding rollercoasters and going horseriding to water-skiing. In fact, if I could travel back in time, I wouldn't change a single thing. I love my life exactly as it is today, and that is something I never thought I would be able to say.
