Why I Test The Limits With My Chronic Illness

When I had my “remission-ish” spell for ten months, the first exercise routine I implemented involved bike riding. The thought process behind my choice of biking was that it was a low impact exercise. Providing it was on the pavement with no incline, it was an ideal sitting activity that did not exacerbate my cardiac symptoms typically provoked by postural changes.

Then, I was just emerging with revitalized health from the Mast Cell Activation Syndrome flare that started it all. My PICC line was pulled, followed by my feeding tube shortly after. I had energy, fewer food and environmental sensitivities, and my symptoms were well managed overall. Of course, I continued to have occasional “bad days” and I was dependent on a strict medication regimen. However, treatment was effective.

I was experiencing a whirlwind of emotions as I acclimated to the drastic, but positive changes occurring in my body. The constraints of my health were significantly reduced. Although I still had multi-faceted limitations that the average person did not—spanning from the foods I could eat without repercussions and how active of a life I was able to lead, I had to learn the boundaries of my restored limits. Conditioning was a huge part of that process.

I went from hardly lifting my head off of the pillow to purchasing my own bicycle. I exited the local Walmart with a baby blue beach cruiser complete with a basket and cup holder I added separately. The bike was not designed for intense cycling, but for leisurely strolls. My fiancé and I took the bike to a nearby park that had a paved track each summer evening. The sense of accomplishment as I crossed the one-mile marker raced through me faster than my scrawny legs could pedal because, by winter, I sped along the miles with ease. I smiled, waving at those I recognized from our small, Florida town where everybody knows everybody. With the wind tousling my hair, I was learning my limits. I felt invincible.

As the biking excursions became almost effortless, biking later served as supplemental cardio for pure enjoyment. I had finally upgraded to weightlifting workouts at the gym I drove myself to fifteen minutes from my house.

Those ten months of reprieve were the best months of my life. Unfortunately, Mast Cell Activation Syndrome treatments have not proven indefinitely helpful. Once my body gets too used to any one medication, food, or lifestyle, symptoms gradually return. As my disease progressed, my limits evolved again, except not necessarily in a good way. My abilities dwindled.

I have since spent a substantial chunk of time waiting for healing, waiting for a flare to end that surpassed the point of a “flare” long ago, waiting for anything that is not this. Life has been postponed in my state of ceaseless waiting, rather than seizing the most out of my current state of (poor) health.

Over the weekend, I was determined to find a “safe” activity. I located an empty parking lot close to some baseball fields. Unloaded from the back of the truck was my baby blue beach cruiser. I hopped on that three-year-old bike in which so many bittersweet memories are attached. The skill of riding a bike is not one to be forgotten. Yet, I was nervous. Being eighty-five pounds and connected to multiple lines, I am accident prone. Combined with my physical weakness, there were unavoidable speed bumps placed sporadically throughout the lot. Despite my hesitancy, I conquered two very short laps!

Between the recent ups and downs and a newly suspected diagnosis, my health is erratic. The moment I begin to assimilate my body’s limits, I hit a speed bump at full momentum—instigating a frightening loss of control. Rarely is the big yellow speed bump an isolated incident. They are almost always consecutive. While the initial scare is shocking, it expands the awareness of drivers to ensure they exhibit attentive vigilance up ahead. Perhaps the speedbump analogy is not an exceedingly ingenious analogy. Regardless, the comparison resonates with my chronic illness experience. Flares and progression of illness are often unexpected. The worsening of symptoms tends to catch me off guard. Right as I recover or adjust, another setback proceeds it with as much surprise as its antecedent.

I have to move forward though. Similar riding a bike, “speed bumps” are a warning to proceed with caution— not to impede all progress. I must overcome the shock of the first to accelerate passed the subsequent. If I am repressed by fear, I won’t make it over the next speed bump; instead, ricocheting off of the ridge to roll backward with even less control than persevering and bracing the obstacle with a firm grasp on the handlebars. Whether it is a flare caused at random, by a treatment trial gone awry, or a failed attempt at exercise or having fun, stopping in fear yields little progress.

I am not sure what my body is capable of nowadays, but I need to test the limits to truly live.

 

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