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Walking the Tightrope: Finding Balance With Competing Illnesses

When I was a kid I never cared much for the circus. The animals being paraded, walking through mud and hay to waste money on a game you’re set up to lose and going on vomit-inducing rides. One part however did fascinate me, and that was the acrobats. Even as I’ve grown older I’ve been captured by the pure physical ability and strength it takes to contort your body high above the ground in a beautifully decorated costume. I think about how much discipline it takes every day to keep your body in that type of shape through exercise, stretching, diet and diligent practice to be capable of putting on a mesmerizing show for an audience. It’s a lifestyle I always imagined myself aspiring to – to be so in tune with your body and to treat it like a temple. What I didn’t realize is that I soon would be joining a circus of my own.

Over a year ago I was diagnosed with narcolepsy. It had likely developed over the course of eight years and readily began to reveal itself in my late 20s. Before my diagnosis I noticed my chronic fatigue and attributed it to graduate school while living across the country from my ex-husband, who was struggling with epilepsy and pending brain surgeries. The stress of all of it and the amount of energy I used every day seemed to fit the bill. To help myself I began to exercise more, eat a cleaner diet and be more diligent about my sleep patterns. It wasn’t perfect but it helped a little.

Once diagnosed, I tried my best to stick with more natural remedies for treating narcolepsy. Aside from eliminating most processed foods and making a greater effort to exercise, I started doing yoga and seeking out therapy. I also began biking to work as it was not always safe for me to drive and also helped me to stay awake while simultaneously avoid some of the stimulants. I got a diffuser as a gift from my roommate and used it to help me wake up with a more positive attitude. I slept when I needed to and became less hard on myself when I couldn’t get things done. None of it was easy and I gave myself a year to rally around my body’s needs and my grief as I shifted to my not so “new normal.” I wasn’t perfect, but it helped quite a bit. I was feeling pretty confident about my needs, my newfound happiness and the efforts I had put in. I felt like I was in a good place with my feet on the ground. What I didn’t know was that this was all training.

It was almost to the day of my very progressive and steadfast year of narcolepsy adjustment that I was tossed into the show. I was diagnosed with a second nervous system related chronic illness, fibromyalgia. As I sat nervously in the stiff chair, palm up, surrendering more of my blood for testing, I was praying for any of the test results to come back positive, as most of these positive tests were treatable. I smirked to myself – I never thought in my life I’d be championing for a chlamydia diagnosis. They all came back clear. I was now not only the owner of a lifetime of fatigue but I also became the owner of a lifetime of chronic pain. I was crushed, and thus began the most painful grief I’d ever experience. I wasn’t ready. I needed more practice.

For the next nine weeks I would feel like I was constantly on a circus ride. I was confused, dizzy, and nauseated. My body became tight with pain so consuming that my brain checked out of my body completely. Like nails on a chalkboard, or that feeling you get when you think about chewing on tin foil, my body experienced that type of sensitivity every day, for eight weeks, day after day after day. At times I experienced headaches so bad I would hallucinate…and differently than the hallucinations that come with narcolepsy. I would find myself paying for supplements and therapies that were just a game I was set up to lose each time. Much of the advice I received to help relax my nervous system such as moderate exercise and antidepressants only made my narcolepsy worse. Exercise and the stimulants that made my narcolepsy better made my fibromyalgia worse. I all of a sudden found myself high above the ground walking a tightrope.

At this point, training season was over – it was time for the big top and I would now begin the arduous regimen of a tightrope walker. Everything I do to my body matters, from what I choose for exercise and how often to what I eat and the environment. Cool, rainy days meant painful exercise and pain when chewing, or just being a person on the planet. My life will now revolve around my body’s needs, and as I learn to accommodate them my balancing pole gets just a bit longer, allowing me to take each step forward more easily. Some of my practice involves setting aside time for self-care techniques like self-massage and daily meditation to mentally prepare myself for the walk. These tools are in my “mind over matter” toolkit that helps me to walk with a calm and peaceful face. I also have to focus on my body so greatly which can oftentimes be painful; however, I need to move my body and stretch everywhere. My diet is a third component that makes or breaks whether I step right off the rope and go tumbling down. Sugar-free, organic, MSG, gluten-free, preservative-free food.

Let’s not forget the fancy attire. I now find myself “dressing for the show” as well. I started to find just wearing a bra or stiff pair of jeans to be painful and felt I couldn’t always perform at my best in pajamas. So I adjust however I need to show my audience the ease of being a practiced tight rope walker. People worry less if you appear to know what you’re doing. I’ve found that wearing a sports bra or no bra under an outfit of layers can reduce my discomfort. My outfits have slowly evolved into legging-clad, fashionably acceptable comfort clothing. I can disguise the fact that I’m in pain just a little more and the façade lives on.

The performance is becoming flawless as I walk the rope each day, sometimes with a bit of brain fog making it difficult to see my next step. However, if I can access all of my other tools, I do OK. Those who know me beyond my tightrope walking ability have seen behind the scenes. These are my friends, family, partner and fellow tightrope walkers who bear witness to the efforts applied each day to make it across that wire. They’re what brings the ground a little closer to my feet so it doesn’t seem so scary. They help me continue to try happiness as my default emotion on good days and bad. Happiness is the key to learning to love this lifestyle, and providing my body with a routine means it doesn’t have to react as often. Making efforts to set myself up for success allows room for the happiness to exist within it instead of using precious time to pull myself back on the rope when I’ve slipped. Don’t get me wrong, I will slip, it’s inevitable. There will always be days I fall and catch myself and each time pull myself back up whether I want to or not, but somehow walking high above it all has its advantages. I can see a lot from here. Certainly there are times I feel removed from the crowd, and that has become OK. I don’t fit in there anymore; I belong in the circus.

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Thinkstock photo via Orla.