Prepare to be inspired. This interview is with Nicole of the blog Bite Me. The Epic Saga of Lyme Disease & Me. As you read on, you will see she is a talented writer, and if you visit her Etsy store (which I strongly recommend you do), you will see she is also a talented knitter. I have yet to require a picc line, but if I do, I will run over to her store and buy one of her beautiful covers. Nicole's personality shines through her illness and she has wisdom beyond her years. I hope you enjoy the interview and visit Bite Me. to follow Nicole along her Lyme journey. You will definitely learn a thing or two.
Tell us a little about yourself and your blog:
My name is Nicole, I'm 23 and have been blogging away at Bite Me. since I was 15. I have always had a passion for writing, and it is a healthy, therapeutic way to share what I am going through, and to process all the craziness that comes with being chronically ill. I had very little energy when I started, but words are something that have always come easy to me. When I first became ill in 2008, there was much less Lyme disease awareness, and few people were sharing their stories. I want to help educate, and maybe bring hope to people using my tiny platform in this corner of the universe.
What are your passions?
(Okay, how much time do we have? I am an extremely passionate person, and have to censor my use of exclamation points!) The Arts are a huge part of my life: I love making collages, singing in choir, playing classical piano and composition. I knit for hours every day, and have a shop on Etsy (Fresh Squeezed Lyme Aid) where I sell my creations. I designed knitted picc line covers for myself during years of treatment, and received so many compliments that I opened up shop. It seemed like a wonderful way to help people, raise awareness and donate money for Lyme disease charities. I also spin yarn (although I've yet to learn to spin straw into gold) and create art batts. It's such wonderful therapy for my legs, too. I started a sister shop on etsy for fiberish endeavors, which is magical: Etsy (The Spinnacle). I practice yoga and mediation. I read voraciously and am a photographer. I love cooking scrumptious gluten-free vegan foods (particularly refined-sugar free desserts). I spend a lot of my time resting, and have a ton of time to pursue passions, which is a lovely silver lining.
How long did it take for you to get a diagnosis?
Like a lot of people, I don't know how when I was bitten, or how long I've been sick. I believe I've been unwell since early childhood, where I had some strange health problems. I became really ill when I was 12-13 years old, so it took me about 3 years to get diagnosed from the point I started "really" becoming debilitated.
What was your lowest point and how did you find your way out of it?
Hitting rock bottom is so humbling, and an experience I hope you only have to do once, maximum. It has made me realize how simple most things in life are, and to not sweat the small stuff.
I went from being a super active grade 10 student to being in a wheelchair in a number of weeks. That was crazy. What began as a short trip to the US. To see an LLMD ended with us travelling to 3 states, and staying 9 months while I was undergoing treatment. Doing IV therapy for several years was a sort of extended low point in my journey, because I felt pretty crappy. I guess a recent rock bottom was somewhere between getting pancreatitis and withdrawing from pain medication. I clawed my way out through sheer force of will, practice, mediation, hope, supplements, and love. Looking up from the bottom, it never seems possible, so I usually tell myself that in the future, I will look back at this moment with pride because I survived.
What is the one thing you have found most helpful in treatment?
Staying positive. Keeping my face to the sunshine, and being strong enough to reach out for help. I try to bring to mind the things I am grateful in my life. Even if it's something simple, like the way today, in between stormy clouds, rain, and gusty winds, there was a bit of brilliant blue sky and sunshine. I try to hold on to those moments of simple joy, and store them for when I need them most.
Okay that's way more than 1 thing, but hopefully you'll forgive me because I am Chronically verbose.
What do you want people to know about Lyme disease?
Lyme disease is much more common than we've been led to believe. And I'd want people to understand more about it, to help break the stigmas surrounding tick-bourne infections. It is incredibly difficult to fight both an infection and misinformation and prejudice.
Lyme prevention is like that teddy bear picnic song, so if you go out in the woods today, please check yourself for ticks after, and go in disguise (tuck you pants into your socks! Wear light colored clothes!). And If I never again heard the phrase, "Hard to catch and easy to cure," again it would be too soon.
What are you most grateful for in your healing journey?
Community. Family. Friends. Music. Ocean. Amazing, compassionate doctors of all different disciplines who put their livelihoods on the line to help patients. I've met so many incredible people on my healing journey, and feel so blessed to have been shown how much goodness there is on this beautiful planet.
I'm Kerry and I was diagnosed with chronic Lyme disease in 2016. This is a positive space for those of us coping with Lyme disease and other invisible illnesses.