In this section
This is my journey from being in a wheel chair, to having neurosurgery at the Trust, and so on
Hanging off the edge of Crib Goch ridge, with a sheer 60m drop underneath me, with my collapsible crutches strapped to my backpack… “Well, that was a bit sketchy” I said to my friend as we got over the crux of the climb part way into our 38km, 16-hour hike. That started our little inside joke, it roughly translates to “Wow we could’ve died… oh well!” and it has got us giggling through everything from sketchy climbs to close calls with Sepsis and Anaphylaxis.
At 16 years old I became a wheelchair user with a debilitating chronic illness without a name, it was an uphill battle for a diagnosis as most of my symptoms were blamed on my complex PTSD after years of childhood trauma. I’d gone from a mountain climbing gifted kid, to a teenager who couldn’t get out of bed without help. This book is about resilience, surviving trauma, being diagnosed with a rare disease, learning to celebrate Neurodiversity, adapting to life with a dynamic disability, and learning to manage the conditions I now live with (Ehlers Danlos Syndrome, Spastic Paraplegia, Autism, ADHD, and Complex-PTSD).
This story will centre around my journey from being in a wheelchair, to having Neurosurgery at the Trust in March 2020 and my long road to recovery. From relearning how to walk with just my mum for support mid-lockdown, all the way to climbing 122 Wainwright mountains in the Lake District and solo travelling around the world. I’ll talk about the highs and lows, finding humour and joy in dark times, turning medical trauma to a passionate career in healthcare, and learning to love myself not just despite my disabilities, but also because of who they make me.
My book is about how so many of us have to live with a condition that is not apparent for others to see but which can set us apart. But that doesn’t make me ‘not normal’ – I am normal for me.
As a child I was always labelled a day dreamer, someone who was always not quite in the world. I didn’t recognise myself in the mirror; I saw things that weren’t there and I could experience deja vu a number of times even whilst doing something as simple as making a cup of tea. To me, however, these were all my normal. In my early 20s I started sporadically to experience full seizures that landed me in hospital and at 27 I was formally diagnosed with temporal lobe epilepsy and told that I would need to take medication for the rest of my life to control the seizures. I lost my driving licence but I also lost a lot of things that as a child I took for granted – the visions and the deja vu. On the one hand I had the relief of the explanation behind these ‘strange’ experiences and the drugs to prevent the awful and life-threatening seizures but on the other hand the medication made me slow and tired. I can lose my balance easily and slur or forget words. My book is about how so many of us have to live with a condition that is not apparent for others to see but which can set us apart. But that doesn’t make me ‘not normal’ – I am normal for me.
A little bit of titty chat, my journey through breast cancer with love and support.
In November 2021 I was diagnosed with breast cancer at the age of 48. After telling my family and close friends, I set up a WhatsApp group called “A Litty Bitty Titty Chat” to update friends and family throughout my journey. That WhatsApp group became an invaluable source of love and support through what was, at times, a challenging 14 months. The book is about my journey, my highs, my lows and all the bits in between! I have gone from being someone who was in the gym 4 or 5 times a week, to someone who is not able to walk upstairs now on some days without stopping for breath halfway. This is not just the journey to get rid of the cancer but the ongoing journey afterwards; the anxiety associated with returning to work, trying to get back to ‘normal’ (whatever that is), accepting the new, and different, version of me and living (and hopefully thriving) beyond a cancer diagnosis.
This book is all about me, and what it is like to live with physical disabilities and long-term health conditions that can significantly impact life, love and the perception that people have of you
This book will be open and honest with you, sharing their experiences of wading through normal life, and working for over a quarter of a century in the NHS.
This book will only share what it feels it wants to share, but will give you food for thought and a thirst to know more.
This book will only share what you ask, so do your prep.
This book will open a portal to a different but equally valid type of life.
