Finding Joy with Lyme disease

Morven-May was an active teenager, participating in running, cycling, Munro walking, horse riding, swimming and many other activities until she became so ill with Lyme disease that she was forced to leave school.  She shares her story of recovery at Breakspear Medical and tells us about her debut novel, which focuses on living with Lyme disease.

Excerpt from Breakspear Medical Bulletin Issue 43:

Finding Joy with Lyme disease

My name is Morven-May MacCallum and I am the author of the novel Finding Joy, which is about a family’s fight against Lyme disease.

I was 16 when I was forced to leave school because the symptoms I had been battling for over a year had finally crippled me. My health was on a continuous spiral of deterioration, as a constant barrage of symptoms overpowered my once strong and able body.

Over a period of three years, I was wrongly diagnosed three times by GPs and Consultants. During that time, I became almost completely housebound and increasingly bedbound. I was losing everything that made me who I was and everything that makes a person human.

My numerous early blood tests for Lyme disease came back as negative and as a result, the doctors were adamant that I could not have Lyme disease. I was even told, despite living and working in the countryside all my life, that I did not live in an area where you can get Lyme disease.

Was it all in my head?

Despite my increasing debilitation, I constantly pushed myself to attempt to be active because I was told by these doctors that I was not working hard enough. They made me feel as though it was my fault I was unwell.

Before I became ill at 16, I was someone who was always on the go. I went running, cycling, Munro walking, horse riding and swimming. I was up for trying anything! I worked full-time in the holidays and volunteered at an animal rescue centre at the weekends. I was preparing to go to university and to start a new life in a new city, but instead I was left dependent on those around me for my basic care and well-being.

I lived with the erroneous diagnosis of ME/CFS for a long time. During this time, the Lyme disease was allowed to devour my physical and mental strength. I was fortunate in that my family was able to do a huge amount of research into various illnesses on my behalf, as at the time my mental abilities had reduced so much that I struggled to read or follow conversations. My mind just couldn’t process information. I was becoming so weak that I struggled to walk even the shortest of distances. I had a baffling array of symptoms, which were staggering, overwhelming and agonising.

It was from the research my family did that we became certain that my diagnosis of ME/CFS was incorrect.

During my mum’s hunt for a diagnosis, she found Breakspear Medical and arranged for me to see Dr Jean Monro.

For my first appointment, we flew down from the Highlands of Scotland several days in advance so that I could recover from the exertion and be well enough to attend it. Dr Monro thoroughly investigated and examined me and from this I was clinically diagnosed with Lyme disease and co-infections, which was confirmed with positive blood results.

Getting treatment at Breakspear Medical

I’ve been on around six years of treatment at Breakspear Medical and I still have a long way to go, but just being able to be a part of the world again, even in a small way, is extraordinary and I hope I never forget to appreciate that. As my health began to improve, I could slowly feel my mental faculties returning to me, the same way I could feel the strength returning to my muscles with the gentle exercise routine I had put myself on. I relished being able to read and write again. Words have always held a fascination for me and writing has been a huge part of my life ever since I was a child.

As time went on, I felt an increasing need to do something to make people more aware of this devastating disease. I kept hearing stories about people who were having their lives destroyed by Lyme disease and I couldn’t stand the idea of not trying to do something to help rectify the situation. It seemed natural to combine my passion for writing with raising awareness but it was hard for me to surrender the only part of my life not tainted by Lyme disease. Writing is my escape and when I write, the world around me disappears and I was reluctant at first to allow the Lyme to invade that.

But some stories need to be told and I felt that this was one of them, so I decided to write a novel from a fictitious point of view, as I felt this would be far more powerful and emotive. As I was writing, I began to feel that this story was far bigger than that of the main character. I know how this illness profoundly affects the family and friends of the person who is ill and I felt that their story needed to be told, too. I began to write Finding Joy from three perspectives to illustrate how Lyme disease takes from all associated with it. Writing in this way allowed me to fully appreciate how miraculous the friends and family who stuck by me truly are. I was also very aware of how dark a story about Lyme disease would be so humour was an important element that I hope I’ve managed to inject into the story. I have been using Finding Joy to help raise awareness for Lyme disease by giving talks at literary and charity events, schools, festivals and bookshops. I have been raising money at these events for Lyme Disease UK who have been wonderful in supplying me with material such as leaflets and posters. It’s astounding that so many people have Lyme disease yet still there is such a vast number of people who know little about it. I’ve learned that a lot of people still don’t know how to prevent a tick bite on themselves, their family or their pets. Many people don’t know how to remove a tick safely or what the early symptoms are so that they can get treatment as early as possible. I hope, even if in a small way, to rectify this lack of knowledge. It was Lyme Disease UK who kindly invited me to the Scottish Parliament where a debate and meeting about Lyme disease was being held. It was incredibly liberating to be well enough to travel and it was wonderful to see parliament in session. I had never imagined that my novel would be held up before Scottish MSP Maree Todd. It’s a moment that I will never forget.

I really hope Finding Joy can help those who don’t have Lyme to understand what it is like to live with Lyme disease and to help those who do to know that they are not alone in what they are going through.

#lymedisease https://morven-may.co.uk/ Twitter – @MorvenMay Facebook – @morvenmay