My journey with Cauda Equina Syndrome (CES) was nothing short of devastating. One moment, I was the happiest I had ever been, and the next, I was trapped in a nightmare—fighting to be heard, fighting for the right diagnosis, fighting to be taken seriously. By the time I finally had surgery, it was 11 days too late. The damage was done. I was left with permanent nerve damage, foot drop, and a body I no longer recognized. But the hardest part? I was left alone to figure it all out.
Because of COVID, there were no follow-ups, no rehab, no one to guide me. I turned to Google to teach myself how to live with this new reality. I didn’t know what was normal, what was possible, or if I would ever feel like myself again. When another bulging episode hit, my world shattered even further. My balance and coordination collapsed, and so did my mental health. The panic attacks were relentless—even in my sleep. I was drowning in fear, isolated, and lost.
Then, 18 months after my surgery, I found Cauda Equina Champions Charity, and for the first time, I felt seen. This wasn’t just a charity—it was a lifeline. They taught me everything I should have known from the start—how to manage my symptoms, how to take care of my body, how to live again. They connected me with psychotherapists who truly understood what I was going through, helping me heal in ways I didn’t think were possible.
But the most powerful support came from the people—the incredible members in the Facebook support group who gave me hope when I had none. They shared their experiences, copied their physiotherapy exercises for me when I had no access to rehab, and helped me find the right foot brace that changed everything. They believed in me when I couldn’t believe in myself. They encouraged me to try ballroom dancing again, even with my limitations—because why not? Why should this injury take away the things that bring us joy?
Without Cauda Equina Champions Charity, I wouldn’t be here today—not just surviving, but thriving. That is why I am now giving back. As an ambassador and CES Buddy, I help newly diagnosed members navigate this terrifying journey, so they never feel as lost and alone as I once did. I also work with medical professionals, sharing what it’s truly like to live with CES—because understanding our reality can change how future patients are treated. And through social media, I spread awareness of CES and the red flag symptoms that can mean the difference between recovery and a life-altering injury.
This is more than a cause to me. It’s my mission. Because no one should ever have to fight this battle alone.