Moven-May is a writer from Scotland. She was a teenager when she was diagnosed with Chronic Fatigue Syndrome, only to find out later it was actually Lyme disease. Morven-May has written a novel about Lyme based on her experience. She hopes to raise awareness of Lyme in a part of the world where it is rarely recognized and difficult to find treatment. Read on to learn all about Morven-May's fascinating story and where you can buy her book Finding Joy.
Tell us a little about who you are and what you do:
I'm from the Highlands of Scotland and I am the author of the novel Finding Joy. I've been ill a long time, so I'm still learning what I can do now my health is improving. There's a lot of trial and error but the discoveries make it worthwhile.
What is your Lyme story? How do you think you contracted Lyme and how long did it take you to get a diagnosis?
I was a teenager when I contracted Lyme disease and had to drop out of school. I don't remember any one bite in particular, but I remember being bitten as a child. It took around four years before I was diagnosed with Lyme disease. The Doctors were adamant that I could not have Lyme disease because my blood results were negative. When the Doctors couldn't find any cause for my symptoms they decided that I must have ME/CFS. Once this diagnosis was made I was left to fend for myself—I was 18 and by this point, I was housebound and increasingly bed bound. We began hearing about people in our area who had been diagnosed with ME/CFS, and then later diagnosed with Lyme disease. My mum did a huge amount of research and found a frightening amount of correlation between my symptoms and those for Lyme disease. I was very lucky because at the time I could not have done the research needed to discover what was wrong with me. My mum managed to find a private hospital where I was diagnosed with Lyme disease and co-infections. It was quite extraordinary getting the private blood results back, which proves I have Lyme, after being told so forcefully that I couldn't have it by the hospitals. For the past six years, I have been undergoing intensive treatment and in the past year, there has been significant improvement in my health. I hope it continues but in case it doesn't, I intend to live as much as I can.
You're about to publish your debut novel about Lyme disease this summer. Tell us about the writing process and about the book:
I have to admit that my writing process is a bit chaotic. I seem to get my ideas at the most inconvenient times, so I tend to grab the closest thing to me and quickly write it down before I forget. I have lots of bits of paper, receipts and opened envelopes full of scribbles. Then I sit down with a big cup of tea and just write—my bits of paper often scattered around me in an unorganized mess. Since having Lyme, my concentration has been very poor but when I write the world slips away and time just disappears—I'm completely absorbed by it.
What is the one thing that you have found most helpful in treatment?
I think the thing I find most useful in the treatment and recovery stage has actually been protein shakes. When I was really unwell, I used to take one after having a shower because the exertion was so huge and I found it really helped with the physical exhaustion. Now I'm doing better, I take them after I've been for a walk. I've found that they really make a difference.
What do you want people to know about Lyme disease?
I really want people to know the truth about what living with Lyme is like. My book is, I hope, an honest account of a life with Lyme. The story is told from three different points of view because I felt, given the huge effect this illness has had on my family and friends, that their story needed to be told too. Although the book is about what it's like to live with Lyme, I hope to use it to raise awareness about Lyme disease.
If you could take away one symptom, which symptom would you take away and why?
That’s a really difficult one...there's sadly so many to choose from.
What are you most grateful for in your healing journey?
That one's easy...my family and my friends are what I am most grateful for. Writing my book has only reaffirmed to me how lucky I am to have them by my side and how truly extraordinary they are.
What changes do you still feel you need to make in order to heal?
I should probably drink less tea.
Is there a person who inspires you in the Lyme community?
Bada UK was a great charity who helped a lot of people, sadly they're no longer running.
Please share a mantra or quote that inspires you:
"The secret to happiness is freedom...And the secret to freedom is courage." - Thucydides
You can find Morven here:
Website – www.morven-may.co.uk
Twitter – @Morven-May
Facebook – @morvenmay
"The whole of life is about another chance, and while we are alive, till the very end, there is always another chance." - Jeanette Winterson