How I exercise with MCAS, EDS, and dysautonomia

What if I told you that I get up early most weekends… to compete… athletically… in front of lots of people?

While many people would be horrified by this combination alone, don’t forget my physical disabilities and history of exercise-induced anaphylaxis!

Let me back up to 2017, when I canceled my gym membership due to dysautonomia, subluxations, and life-threatening mast cell reactions. 

I wasn’t completely honest. I didn’t cancel all my gym memberships. 

You see I’m part of an athletic team, and while I canceled my personal membership, I couldn’t bear to abandon my teammate.

My 10-pound toy poodle, Quixote. 

Toy poodle Quixote in snow

One night in 2014, before my diagnoses, when Quixote was 5-years-old and interrupting my reading because he never learned to play quietly with his younger brother like I hoped, I signed him up for an agility class. Attracted by the bright obstacles and potential bragging rights, agility had always interested me. Quixote had crushed his puppy class, choreographing his own circus routine for anyone with treats. I didn’t know what agility training actually entailed, but I decided my poodle would likely be the best. 

Quixote absolutely loved class. Why wouldn’t he? The first few months consisted of showering him with meat, cheese, and praise any time he did an obstacle. When it wasn’t his turn, Quixote wooed my classmates into giving him more treats and praise. 

As Quixote’s confidence on the equipment increased, agility training essentially became human training. I significantly underestimated the mental and physical precision required to direct a four-legged beast through an agility course at full speed. I had to learn the footwork, arm movements, and timing of commands. Every time we missed an obstacle, the instructor pointed out how it was my fault and Quixote howled in agreement. Nobody showered me with treats.

As the months passed, Quixote ran harder and faster, but my body did not get stronger. My muscles felt heavy with weakness, and my lungs burned as I tried to shout the commands. My heart distracted me with its pounding. I joked to my friends that I must be allergic to exercise. Unfortunately, there was much more than a grain of truth in that joke. 

By the time I was diagnosed with mast cell activation syndrome (MCAS), I could barely walk across my condo without passing out or throwing up. All types of food induced terrifying asthma attacks. My skin and joints were so inflamed that I cried getting dressed for work each morning. 

Quixote didn’t care. When I couldn’t take him outside for walks or throw his ball, he hopped onto the tallest furniture and whined his grievances, throwing in an occasional growl. I had created an exercise monster. Eventually I couldn’t handle the anger of both my body and my poodle, so kept taking Quixote to class as much as possible. 

By the time I reached my disability parking spot at the agility gym, the screams of my body were often muffled by the squeals of my poodle. Once inside, Quixote bounced around the gym as if it were the greatest place on Earth. When it was our turn, I used every bit of energy to play with my poodle. My timing was usually off and afterwards I usually collapsed in pain and wheezing, but seeing Quixote happy made me happy. Although recovering from class required several days of laying on the couch, rest became much more bearable when I replayed his agility highlights in my head or on my phone. 

The pain didn’t scare me as much as the mast cell reactions. As I began to experience throat swelling and air hunger, I searched for a definitive guide. For the most part, all I found were basic medical liability disclaimers. I felt silly seeking validation for a hobby that made me sick, but I had already lost so much: foods, friends, and basic abilities. 

One day, a specialist said, “Sometimes we do things that make us feel sick in the short term, so we can feel better in the long term.”

There was no promise that I wouldn’t have anaphylaxis or need an ambulance, but my doctor urged me to continue with agility. I decided I was willing to risk having acute reactions for my long term wellbeing. Luckily, my instructor and agility friends were willing to support me and learn my emergency protocol.

With the help of daily meds and premedication (yes, I took 50mg of Benadryl to exercise), I began to see the advantages of agility for MCAS, EDS, and dysautonomia. First, people rarely wear fragrance to run with their dogs. Even in the rare event of perfume, the agility gyms have high ceilings and lots of space, meaning good airflow. I’m also lucky that I live in Minnesota where dogs train indoors, so I can avoid the sun and heat. Although I still worry about falling, the foam floor mats are safer than most surfaces.

I noticed that walking the courses for five minutes was much harder than running the course for one minute. Dysautonomia can cause dysfunction of the nervous system when standing–in other words, it can make you feel like you’re going to throw up, pass out, and piss yourself at the same time. I realized, during my timed runs, my competitive focus and adrenaline allowed me to briefly transcend my symptoms. Oftentimes I would skip the course walkthroughs and dedicate all my energy and adrenaline to one smashing run. At the end, I would yell, “One run and done!” knowing there was no way my body could do it a second time.

I worked with the instructor to find alternative techniques to accommodate my dizziness, pain, and muscle weakness. I relied less and less on rescue medication as I recognized my body’s limits and warning signs. On the hardest days, I sat and watched, while my friends ran Quixote for me. (He loves agility so much that he didn’t even turn back to look at me!) Through agility, I learned the needs of my disease and how to take care of my body.

Soon enough, Quixote and I began connecting as a team and crushing courses in our own way. Our runs usually lasted less than a minute, but for that brief period of determination, I forgot my illness and pain. Agility became my medicine.

So instead of quitting agility, I signed up for my first competition.

To be continued…

Toy poodle Quixote in agility weave poles
Quixote crushing the weave poles.

In the meantime, here are the details of why agility works for me.

My circuit workout

  • 2 days without exercise or leaving my condo 
  • 3 minutes of walking the course (if I feel like it)
  • 20 minutes of sitting
  • 2 minutes of running
  • 30 minutes of sitting
  • 2 minutes of running (maybe)
  • 2 hours or more of sleeping
  • 2 days without exercise or leaving my condo 

Advantages of dog agility for MCAS, EDS, and dysautonomia

  • High ceilings and lots of space = better air quality (MCAS)
  • Less perfume (MCAS)
  • Short exercise intervals (MCAS, EDS and dysautonomia)
  • Floor mats to lessen impact (EDS and dysautonomia)
  • Supportive environment (everyone needs this, but especially people with disabilities)

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Header image credit: Great Dane Photos

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