 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
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 Susan Pogorzelski is one of the most articulate writers about chronic illness I've come across. It's clear why writing is her chosen career. In this interview she elegantly puts into words the way many Lyme patients feel, but don't know how to express. Like many of us, Susan was infected with Lyme in her youth and then searched for answers for many years. Despite her long, difficult battle she remains positive and hopeful. Tell us a little about who you are and what you do:
Thanks for having me here, Kerry. To tell you a little about myself, I'm an author, editor, and creative coach for my small business, Brown Beagle Books. My latest novel, The Last Letter, was released in September and is based on my own experiences with Lyme disease. I'm also a passionate Lyme advocate and contribute regularly to The Mighty and Global Lyme Alliance blogs. What is your Lyme story? How do you think you contracted Lyme and how long did it take you to get a diagnosis? We can trace the beginning of my health problems back to a middle school camping trip, after which I came down with what we believed was mono. After that, I was never really the same, as year after year I seemed to have a new symptom crop up and then resolve itself. One year, I had trouble breathing, which we now attribute to air hunger. Another year, I had OCD tendencies. Finally, in high school, I had severe panic attacks. Eventually, my doctors diagnosed me with Chronic Fatigue Syndrome, as fatigue was the one symptom that remained with me after all this time. Then, when I was in my late twenties, I began having severe abdominal pain. After dozens of doctor visits and tests, they removed an infected gallbladder. I thought that was the end of my health issues. For about a month, I felt great. But then I started to experience strange new symptoms, and my health declined rapidly. I developed Neurally Mediated Hypotension, migraines, neuropathy, severe neurological and psychological issues such as trouble reading and writing, balance issues, and derealization. I was in so much pain, it was difficult to walk. I was so fatigued, I couldn't lift my head from the pillow for more than minutes at a time. Unfortunately, the rest of my story is all-too familiar to Lyme patients. I saw specialist after specialist, had test after test, but there weren't any answers. Finally, in May of 2012--six months after my gallbladder surgery and fifteen years after that camping trip--I found my LLMD who would diagnose and treat me and in every way save my life. I've been in treatment for five years now, after a brief period of remission in 2014. I'm hopeful that since I reached remission once, I'll be able to reach it again. At least, that's what I'm fighting for now. In honor of Lyme Disease Awareness Month, what do you want people to know about Lyme disease? Lyme is such a lonely and isolating experience, particularly when we're first diagnosed. Not only do patients have to contend with the pain from their physical symptoms, but they're trying to survive a very real, very devastating illness that the medical community continuously denies. What makes it worse is that this disease is still so wildly misunderstood because of this denial. What I want people to be aware of is that the effects of Lyme disease go beyond the physical symptoms. It can completely change a life, which makes recovery that much more of a challenge. For those who do have Lyme, I hope they know they're not alone in these struggles, that there are people fighting for them and with them. For those who don't have Lyme, I hope they're able to understand what the Lyme experience is really like so that they can grow their compassion. What are your passions? Writing has always been my first and forever passion. What's made this illness particularly frustrating is that there have been so many times when I've wanted to write, but I've been unable to do so because of severe neurological dysfunction. However, I'm grateful that I'm able to use my writing now to raise awareness, share our stories, and help others. What was your lowest point and how did you find your way out of it? Oh, boy. My low point. I've had many, as this disease has been a near-constant roller coaster of few highs and a lot of lows. One low in particular was right around the time of my relapse. It had taken me two and a half years to reach remission, and I was so eager to be well again and have my life back, I ignored the warning signs and familiar symptoms. My psychological symptoms caused by the co-infections were in full-swing at this point. I didn't think I was going to survive treatment again, and there was a part of me that wasn't sure if I wanted to. But I sought help--first from my family, then from my friends, and then from the Lyme community, who offered me their strength when I felt like I didn't have any left. It's been two years now, and while some days are harder than others, I'm slowly getting better again. Now I cling to hope with everything I've got. What is the one thing that you have found most helpful in treatment? It took a couple of months when I was first diagnosed to find an antibiotic cocktail that would work for me, and though it took a long time, it led me into remission. With this relapse, we tried a number of different combinations, but knowing how the first worked so well for me in the beginning, I was pretty insistent with my doctors that we try it again. Luckily, they were willing to work with me, and I've been seeing steady improvements since. So I would say be willing to speak up with regard to your care--you know yourself and how your body responds better than anyone, so don't be afraid to take control of your own health. Also, Epsom salt baths for the muscle pain are lifesavers. Light exercise in the pool is also tremendously helpful because of the buoyancy. Once I figured out I could move in the pool with little pain, it was like I came alive again--just don’t overdo it. If you could take away one symptom, which symptom would you take away and why? The fatigue is and always will be my worst symptom. The pain has been excruciating, the psychological symptoms frightening, and the neurological issues frustrating, but the fatigue makes me feel like I'm living a half-life, and there are times when that becomes almost unbearable for how much I'm missing out. I've learned to accept and even live with this fatigue after two decades, but it's still the one I most often wish away. What are you most grateful for in your healing journey? The Lyme community. This community is made up of some of the kindest, bravest, and strongest souls I've ever had the privilege of meeting. While I hate that we've had to meet due to such a miserable, shared experience, I'm grateful for the friendships that have formed because they truly enrich my life. There really is nothing like finding someone who understands you, especially when it comes to this disease. Do you have any advice for the newly diagnosed? Don't give up. I know it sounds so cliché, but this journey is a long one, and so having the resolve to reach remission--which is more than possible--is prudent. I know there are times when we feel weak, wondering when that change might come, but please remember that you're so much stronger than you feel right now. Stay strong. Be brave. And when you don't feel strong or brave, reach out to this community. We'll be strong for you. What would your perfect day look like? My perfect day looks a little different now that I have Lyme. Once upon a time, I would have said my perfect day consisted of strolling along the Seine in Paris, reading books and eating French pastries. Actually, that's a pretty great dream, so I think I'll keep that one tucked in my pocket. But now my perfect day is the one I had yesterday--the sun was shining, and everything felt so fresh and new and alive because it's spring now. I had more energy than I’ve had in months, so I took my dogs for a short walk, then sat on the porch swing and listened to some music. It was perfect because for a little while, I wasn't tired or in pain, but rather at peace. Peaceful days are my new perfect day. Please share a mantra or quote that inspires you: From Sarah Williams' poem, "The Old Astronomer To His Pupil" from the book Twilight Hours, a Legacy of Verse: "Though my soul may set in darkness, it will rise in perfect light; I have loved the stars too fondly to be fearful of the night." Find Susan at the following links: Websites: www.lymebravefoundation.org / www.susanpogorzelski.com Twitter: @LymeBrave Instagram: @LymeBrave Facebook: Lyme Brave Foundation Amazon: The Last Letter: A Novel "Your purpose in life is to find your purpose and give your whole heart and soul to it." - Gautama Buddha  You know Christina as the Lady of Lyme. She writes a well-known blog in the Lyme community and is a tireless advocate for Lyme patients everywhere. That's why I asked Christina to participate in "The Lyme Interview" during Lyme Disease Awareness Month. Her story is similar to many in that she was misdiagnosed for many years before an eventual Lyme diagnosis. In spite of everything she has gone through on her Lyme journey, her positive voice shines through on her blog and in this interview. Make sure you visit Lady of Lyme and follow Christina on Twitter where she likes to hang out and interact. Tell us a little about your blog and who you are:
Hi everyone. My name is Christina Kovacs and I am the creator of the blog Lady of Lyme. I'm from Kentucky and I blog about the ups and downs of my journey healing from Lyme disease, as well as, sharing research and resources with others. I like to think of my blog and my twitter as a little community, because it's very much a give and take. I learn so much from others, and vice versa. What is your Lyme story? How do you think you contracted Lyme and how long did it take you to get a diagnosis? I live in Kentucky and prior to getting diagnosed I had absolutely no idea what Lyme disease was, nor was I aware of the danger of ticks and the need to be protected when spending time outdoors. It was 2006 and I was playing flashlight tag in a wooded area the summer before I went to college. The next day I woke up and came down with what Doctors called a "summer flu." I was sick for an entire month completely bed bound, and I remember thinking this can't be normal. I was eventually given some antibiotics that helped (not the right kind or enough for Lyme), and that seemed to get me well enough to go off to college, but I never felt the same. The fatigue lingered and body pain lingered, and more and more new symptoms began to pile on. Looking back I can definitely say that summer night in 2006 is when I contracted Lyme Disease. As with most Lyme stories I got more ill as the months and years passed while searching for answers, and for me it took 5 years to receive a diagnosis. What are your passions? Oh goodness, I feel like I have so many. I was in school at FIDM (Fashion Institute of Design and Merchandising) working on my second degree when Lyme disease finally caught up with me to a point where I could no longer function. I had to quit school just 2 credits shy of graduating and move home for treatment. Design and the world of fashion have always been a passion of mine because of the ability to create. From a very young age I would seek out local seamstresses to custom make clothing for me that I had dreamt up in my mind. I really enjoy crafting, reading mystery novels, and watching crime solving shows (I am a murder mystery fanatic) and a huge animal lover. I've volunteered at rescues in the past, and hope to do that again when I am well enough. I would love to rescue, adopt, and save every homeless dog if I could. And lastly and most importantly my greatest passion lies in God. My faith has been everything to me, and it's what has carried me though my highest and lowest moments. What was your lowest point and how did you find your way out of it? Hands down my lowest point was when I relapsed. After fighting through treatment for about 3 years and seeing glimpses of my health coming back, it all came crashing down around me. It felt like it happened in slow motion. I was desperately trying to stop it, but I couldn't. The relapse brought new symptoms, some of which were impossible to control. It also brought along depression (which prior to that I had never dealt with). It hit me hard, and that was definitely my low point. It was a long road, but I got out of it with the support of my family, with my pastor coming to my home for bible studies by my bedside, and with Doctors helping to stabilize me and give me a sense of hope that the downward spiral was slowly coming to a halt. It took baby steps, but I began to see the light at the end of the tunnel. I would say the key and saving grace was that the people around me carried my hope for me when I was out of steam. I absolutely did not know how I would recover, but I was surrounded by my family and my faith which sustained me. In honor of Lyme Disease Awareness Month, what do you want people to know about Lyme disease? That it's not named after the fruit. Haha, just kidding. I do get that question a lot and I always chuckle. But in all seriousness I would want people to know that Lyme Disease is completely preventable if you just take precautions and learn to recognize the symptoms. I wish I knew in 2006 what I knew now, and that I had even 1 person educate me about prevention and early intervention. This disease is something that can be caught early before it causes mass body wide damage, and having the facts can change the course of someone's life. What are you most grateful for in your healing journey? The people I have met. I have met some of the most incredible and kind human beings on this journey who I feel so lucky to call my friends. Their strength astounds me and their authentic friendships remind me what it's like to have people in my corner who I can always count on. What changes do you still feel you need to make in order to heal? If I had to pick one thing, I would simplify it and just say physical therapy. PT in every different format; from visual PT needed to repair brain damage, to physical PT for my body which has been primarily in bed for years on end. There is a lot of healing and re-learning to do for parts of my body which were damaged and affected by Lyme disease. Do you have a role model in the Lyme community? Who and why? Katina Makris. When I was first diagnosed in 2011 I was absolutely terrified and overwhelmed. I had made the mistake of Googling Lyme Disease and was under the impression that I may never be well again. I tried searching for others online who recovered and kept coming up empty. That's when the mother of my boyfriend gave me the book, Out of the Woods by Katina Makris. That book completely changed my life. It was the most honest, hopeful, raw journey, which took me into the depths of the hell Katina fought through. It showed the struggle, but it also showed how she came out of it on the other side stronger than ever. She recovered and wrote the book many years after she was well, so I also got to read about how much richer and fuller her life was after she survived the fight of Lyme disease. That book is what gave me hope to begin treatment, and it gave me the fuel to say, "I can do this and I refuse to back down." If Katina could survive all that she went through, then so could I. She was my first role model, and still continues to be as I see her living her best health life 10+ years post Lyme. She is a huge inspiration through and through. Please share a mantra or quote that inspires you: "But God knows the path that I will take; when he has tried me I shall come out as pure as gold." - Job 23:10 "The purpose of life, after all, is to love it, to taste experience to the utmost, to reach out eagerly and without fear for newer and richer experience." - Eleanor Roosevelt |
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