It was some time ago that I last wrote for the incredible community at RARE Revolution. At the time, I had just published my debut novel, Finding Joy, which is the story of a young woman and her family’s fight against Lyme disease. Although my writing is fictitious, it’s based on my own seventeen-year battle with Lyme disease.

When I was fourteen and a half, I was bitten by a tick that was infected with Lyme disease. I was, like so many, misdiagnosed and as a result of this I ended up being housebound and bedbound for over eight years. It’s hard to know where in Scotland I was bitten; it could have been when I was out horse riding, it could have been when I was out cycling (with my dog racing alongside me), it could have been while I was volunteering at the local animal rescue centre, it might even have been while I was helping my grandparents on the croft. Without knowing it, I could not have been at a higher risk for getting Lyme disease and yet this dreadful disease was unheard of.

I developed a horrible summer flu, which developed into joint and bone pain, fatigue, nausea, headaches, stiffness in my upper neck and back, and memory issues. As time went on, the symptoms I developed consumed my body and spirit but I was told that I could not have Lyme disease because I did not have a bull’s-eye rash and because my blood tests were negative (a rash that many people don’t get and blood tests which are sometimes inaccurate). All the activities I once adored fell away as my physical strength melted into weakness and my bright mind became sluggish and slow. We went to the doctors numerous times but they still couldn’t figure out what was wrong with me and so this terrible disease was left to run rampant around my body, wreaking havoc to my life.

At sixteen, I had to drop out of school because by the time I got home from school each day, I would be too physically weak to walk. My mental capacity shrank to the point where I would be sitting in class, reading the same sentence over and over again for the entire duration of the lesson because by the time I got to the end of the sentence, I had forgotten what the start of it said.

Unfortunately, over the years that followed, my condition only worsened. I was eventually told that I had myalgic encephalomyelitis, also called chronic fatigue syndrome or ME/CFS, and left to fend for myself. With what little strength I had slipping away, my mother took me to a private clinic down south which specialises in ME/CFS andLyme disease. It was here that I was diagnosed with Lyme disease and I have since been on around 12 years of treatment—which has taken me to where I am now.

It’s safe to say that I am a million miles away from being able to call myself better but I am now at least more than just my disease. As my health began to return to me, I had a burning desire to want to help other people with Lyme disease and to help prevent other people from enduring what I have been condemned to. So, I decided to combine my passion for writing with my desire to raise awareness and this is where my first published novel was born, Finding Joy.

I was astounded by the response to my work and delighted to start receiving invitations to speak at various events to raise awareness of Lyme disease. It was a terrifying experience, going from being housebound and bedbound to being asked to speak in front of crowds of over a hundred people. The Lyme had so deeply affected my ability to think, speak and socialise that I had to reteach myself how to be around others and how to interact with them. I very much believe in doing the things that scare you and even now, public speaking, is still one of them!

Since publishing my first book, I have travelled the length and breadth of the country, speaking in schools, to literary events, to the armed forces, to universities, to the NHS and Scottish Parliament. I’ve been fortunate enough to be invited to speak on the likes of Countryfile, BBC One’s Disclosure, Kay Adam’s radio show and many more. All these events sound gloriously grand in the pure light of their telling but I would be lying if I said that it doesn’t come at a price to my health, but the exhaustion and pain these events induce are worth it to me, if it saves someone from this disease.

Last August, I published the sequel to my debut novel. Keeping Joy explores the long-term consequences of chronic illness and the challenges of living in the in-between (the world of being so sick that you can’t function but also not being well enough to fully function). It examines how we recreate ourselves after such huge trauma, how we function in a world that is far from understanding of what people call an “invisible illness”. To me, it was important to be brutally honest about the realities of being ill but to also find the humour and light within even the darkest of situations.

I’m currently working on a children’s book to educate children about Lyme disease, but then I’m not too sure… I think I might hang up my Lyme disease writing hat for a while and write about something a little different. Two things are for sure though: firstly, for as long as my health allows it, I will not give up campaigning for those with Lyme, and secondly, that I will always be somewhere writing. Writing is like music to me; every sentence has a rhythm and a flow to it and it always amazes me how changing one word can change the entire feel of a sentence. To me, that is something quite magical.

I’m excited to see where this novel will take me and what the next few years will bring. My journey into turning the tide has by no means been an easy one and I have no doubt that the rollercoaster of my health will throw more at me but I feel incredibly fortunate to be where I am now.

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