Lyme is no respecter of persons. It doesn’t care whether you’ve been taking care of yourself, or if you have children. It doesn’t care about your financial situation or worry about whether you’ll be able to pay your medical bills. Don’t bother showing it a list of all your hopes and dreams. It doesn’t care. It wants you all to itself: mind, body, and soul.
Arianne Jones learned this first-hand in 2016. Her Lyme journey is a unique one. Her struggle with Lyme made her into the person she is today.
The Height of Health
She was an Olympian for Canada in the sport of Luge. The Luge is an interesting, dangerous, and incredibly difficult sport that requires more strength than meets the eye. In order to maintain control, you have to have amazing upper body strength. To manipulate a sled going 90 miles an hour, with the skill of an Olympian, using just your body, is a unique and difficult skill. She had to be in top physical condition at all times. She explains the extent of her dedication and success saying, “I competed on the world stage for a decade all around the globe, competing in 5 world championships, 52 world cups and the Olympics.”
Lyme, however, still found her.
Going from an Olympian to a chronic illness sufferer was quite the transition: “When I first started having Lyme episodes, I was training for the Olympics. Two to three times a day, six days a week, movement was my life and I was Olympic Caliber strong. In the blink of an eye, I started falling asleep on the gym floor, and all of a sudden I could barely walk up the stairs without being out of breath.” After all her training and hard work, this was both frustrating and terrifying.
Overcome by sudden fatigue and a slew of other mysterious symptoms, she was forced to retire from her sport in 2016. She then began her search for answers. After three years of doctors’ visits and unexplained symptoms, she finally discovered it was Lyme. Three years is a ridiculous amount of time to not understand what your body is going through. Sadly, though, many Lymies can tell you a similar story. The emotional toll of suffering from something you can’t understand or describe is astronomical. The symptoms mixed with the confusion and the heartache of lost dreams is more than enough to drive anyone crazy. Arianne, however, did not succumb to these fears. Instead, she directed her attention elsewhere.
She redirected all the fire and drive that made her an Olympic athlete, towards food. By doing this, she discovered the powerful healing that can come from eating right. She became a holistic nutritionist (R.H.N), as well as a Chef from the National Gourmet Institute in NYC. She focuses on local, seasonal and plant-based cuisine. In doing this, she had not only found a natural and healthy way to ease her symptoms, but she has also found joy in doing something she loves.
For Arianne, there is no “typical day.” Making concrete plans for the future can often be discouraging, because she never knows how a day will go until she’s in it. She labels her days in one of three categories; Normal days, Bonk days, and Wave days.
Normal days are days that she finds herself feeling relatively normal. On these days, she has the energy to go about her daily life, apart from exercising like she wishes she was still able to.
The second kind of day, Bonk Days, are the worst. On these days, she wakes up in an episode with an entire host of symptoms. She describes the symptoms as flu-like. She can’t breathe properly, like she’s at an extremely high elevation.
Then, the pain begins, “it feels like it’s in my bones, in my nerves and in my muscles. The depth of ache is so real it feels as if my cells are screaming out in pain. This pain creeps up into my spine and spreads around to my entire body. My head becomes sensitive to any light or sound. My brain feels so vulnerable that the world takes on a constant and slight dizziness. For me to understand someone speaking, I need to focus all my energy on their face. My resting heart rate has now doubled and is sitting at 80-120bpm, spiked from my normal 55bpm. I get neuropathies down my arms, where it feels like my nerves are on fire stinging in pain in zinging bursts. The thought of walking the distance of 15 steps from my couch to my bed seems impossible. I’ll stare at this distance I must conquer as if mentally preparing for the heroic feat of climbing Everest. The exhaustion is mammoth and unforgettable. This typically lasts 12-24 hours.”
These episodes are absolutely debilitating, and she has no idea when they’re coming until they’ve already hit. Like a storm, she must simply wait it out.
Recently, Arianne’s days are mostly composed of the third kind: Waves. She describes wave days hauntingly. “I feel changes hour to hour. One hour I can feel normal and myself, and then in the blink of an eye I have full body pain, nerve pain, brain fog, dizziness and must lay down immediately and ride it out. I might feel normal in an hour, three hours, or not until tomorrow… it’s never the same. These waves may happen once or four times in a day. This is the rollercoaster I live on everyday now.” Life with Lyme is unpredictable. Not only do symptoms vary from person to person, but they also vary for the individual.
Along the way, Arianne has learned a few very powerful lessons. She distills these nuggets of wisdom reminding us to:
“Be vulnerable. Vulnerability is not weak. In fact, I have learned that it is the most courageous and brave act that curates authentic connection with others. Self-care is of the utmost importance. There is no weakness in naps. A little humor can go a long way! Take the time to get quiet. Listen to your body, it holds valuable wisdom inside, however, you cannot hear it when you are encompassed by our society’s glorification of “busy”. Take time to just breathe. Speak kindly to yourself. The things we say to ourselves, we would never dare speak to others. Practice self-compassion. You cannot do this alone. Find your people, your tribe and ask them for help. I truly would not be here without my people.”
Reading Arianne’s story gives us hope and courage. She took on Lyme’s challenge like an Olympian; unwavering in her drive to meet the challenge. Hearing each others stories can help us find belonging and community. Knowing there are others suffering the same thing is extremely powerful.
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We are stronger together.