Note: This essay first appeared on The Mighty on 10/9/2017
Recently, I received a reply on Twitter to an article I’d written about living with Lyme disease. It said, “So true. So powerful. Thank you for writing this (green heart emoji).” Right away I knew this reply was from a fellow Lyme patient. The green heart emoji might not mean anything to most people, but for the Lyme disease community it’s like our secret handshake.
Not surprisingly, the Lyme community chose lime green as our awareness color. It’s a cute play on a homonym. We use limes to represent many things. For example, one of our biggest fundraisers, The Lyme Disease Challenge, is to take a bite out of a lime and post a picture or video on social media. Currently, there is no lime emoji, so instead we use the green heart, which on some operating systems appears lime green. Other groups of people use the green heart emoji, but in our corner of the internet we have claimed it as our own.
Many of us put a green heart in our social media profiles to symbolize our Lyme warrior status and when we write messages to one another many of us put a green heart at the end of the message to show we understand. Even large Lyme non-profit organizations, like the Global Lyme Alliance, use the green heart in their tweets and other social media posts. This practice has spread far and wide throughout the Lyme community.
My Lyme story echoes most Lyme stories. From the time I first started seeking medical treatment for my strange symptoms, 10 years passed before I got a diagnosis. When I was finally diagnosed with Lyme, I went from being isolated to having a huge community of other people like me.
Chronic Lyme disease is often denied by the mainstream medical community. They refer to it as post-treatment Lyme disease syndrome and say there is no treatment. Most of us with chronic Lyme disease were not willing to accept that fate, and have created online and community support groups to help locate knowledgeable doctors and compare symptoms and treatments. I often turn to the online support group in Illinois when a new symptom arises. Usually someone else has experienced the same symptom and can point me in the right direction. The online community is also wonderful for those really bad days when I just need to vent or have a cyber-shoulder to cry on.
When I first started my blog and social media accounts I didn’t know about the green heart, but slowly I noticed that after each tweet or direct message there was that heart. Soon, I started to use it, too, and I liked how it added something to the message, like a winky face, but just for Lyme. Eventually, I added it to my Twitter and Instagram profiles and when people came upon my profile they already knew a little bit about me and the type of symptoms I was dealing with.
The green heart emoji is a little symbol of what we all face together and a small act of solidarity and love. Lyme patients, let’s keep spreading the love across the internet, one green heart at a time.
"No beauty shines brighter than that of a good heart." - Unknown
Last week I went to a yoga class with a plank sequence that went on twenty minutes. While the rest of the class did low plank, high plank, side plank, and one-legged plank, I was in child’s pose. There were at least two people in the class over seventy-five who seemed to have no problem with the planks. At first I was embarrassed being folded up in a little ball while the others we’re sweating through their gym clothes, but then I remembered—my challenge was just in getting there.
When I walk into a yoga studio there is no indication from my outward appearance I’ll be the one in child’s pose half the class. I’m average weight and usually one of the youngest. The reason I struggle is because, in addition to Lyme, I have an autoimmune condition called SAPHO Syndrome. It’s a type of reactive arthritis that attacks my muscles, joints, and bones. Over time, this extremely rare illness caused fusion in my lumbar spine and sacral joints. I also have fusion in my clavicle, limiting the range of motion in my shoulder. I’m lucky if I can just touch a block in forward fold. SAPHO also causes chronic pain. In spite of my physical limitations, I will never stop going to yoga. For me, the positives far outweigh the negatives.
I fell in love with yoga, when I bought a DVD called Yoga Conditioning for Weight Loss to get in shape for my wedding 10 years ago, but it was only after I became ill that I truly understood the benefits of regular practice. When I’m in yoga class, I am at peace. My sympathetic nervous system, or “fight or flight” reflex shuts down and puts me in the healing state of “rest and digest.” It’s the only type of exercise I feel comfortable doing with my condition, because I don’t have to worry that it will put a strain on my already taxed immune system.
Yoga also helps me maintain the range of motion I still have, and hopefully will help me gain some back. Due to my unstable spine, my hamstrings overcompensate and become extremely tight. With regular practice I’m able to inch the tiniest bit closer to touching my toes. In addition to adding flexibility, the stretches ease and prevent pain.
Like many people with Lyme and related autoimmune disorders I also have chronic fatigue, which means most days I don’t have the energy to go to yoga and after I finish class, I’m exhausted. I usually only make it to one or two classes a week. It takes a lot of motivation to get myself to go, but when I’m done I feel so accomplished--exhausted--but accomplished. I used to worry that the teacher or other students would think I was lazy or not trying, but through yoga I’ve learned to listen to myself. Now, I don’t worry about what other people think, and simply do what my body tells me it needs.
For other people with limitations who have been considering yoga, I encourage you to try it. There are chair, gentle, restorative, and slow flow classes at most gyms and studios. These classes are designed for beginners or those of us who need to take it easy. You can slowly work your way up to the next level. For those of you who are intimidated by a group class, private sessions may be an option. There are also certified yoga therapists, who meet individually with clients and use yoga poses and breathing techniques to treat emotional and physical ailments.
It’s also important to note that using pose modifications and props help you get the most out of your practice. Don’t be ashamed to use a block or a strap—even the most experienced yogis use them to deepen poses. When I reach my limit, I simply go into child’s pose and rest. Make sure you communicate your physical restrictions with the instructor before class.
At the end of each class when I bow to the teacher and my classmates and say, “namaste,” in my head I always say my preferred English translation, “the divine in me blesses and honors the divine in you.” We’re all sacred beings, and no one in any yoga class is better than anyone else based on ability or flexibility. What’s important is showing up and listening to your body. Remember, honoring yourself is the honoring the divine.
"Yoga is not about touching your toes, it is what you learn on the way down." - Jigar Gor
I've heard the fall is tough on Lyme patients and this fall has not been an exception for me. So far it's been full of symptom flares and new symptoms as the weather fluctuates and allergens abound.
It has me feeling a little more blue than usual. For awhile, I thought things were improving and then I have another set back. A doctor recently asked me when the last time I felt healthy was and I honestly didn't have an answer. That question was the inspiration for this article.
You can read it in full on the Global Lyme Alliance website:
I've Been Sick So Long I Can't Remember What It Feels Like to Be Healthy
How long have you been sick? When was the last time you felt healthy?
"At the end of the day all you need is hope and strength. Hope that it will get better, and strength to hold on until it does." - Unknown
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.