How I exercise with MCAS, EDS, and dysautonomia

Toy poodle Quixote runs through agility tunnel

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.

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. MCAS can cause POTS (dysfunction of the autonomic nervous system, especially when standing) and prevent oxygen from getting to all the right places. 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 allowed me to briefly transcend my symptoms. Oftentimes I would skip the course walkthroughs and dedicate all my energy 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

A MCAS friend

Despite having a treatable infection, after 62 appointments and emergency room visits, Nicolle resigned to hospice in hopes of getting relief from her tortuous pain. I cried for hours when I realized how close she was to death with no options. Since March, Nicolle has become an irreplaceable friend who texts me good morning and goodnight every damn day. She is my biggest fan and helps me in every way. I didn’t know what to do, so I wrote:

A MCAS friend

A MCAS friend checks on you more than anyone else, because they know every hour is a new challenge.

A MCAS friend knows which medications you tolerate and when to suggest a rescue dose.

A MCAS friend advocates for you when you want to give up.

A MCAS friend reminds you you’re amazing, especially when you feel inadequate because you’re comparing yourself to everyone else.

A MCAS friend does not shy away from your most gruesome symptoms. They may even one-up you for the sake of levity.

A MCAS friend know how to make you laugh even when you’re delirious.

A MCAS friend makes plans with you to change the world, even though you’ve never met.

***

Nicolle read it and messaged me a bunch of heart emojis. And then she said:

“I hope some of that applies to me, and is not just a wish list for your replacement friend.”

I laughed so hard at her perfect joke soothing me through her own death. And then realized I cannot lose Nicolle. Not now. Not over a fucking treatable infection.

I had never met Nicolle in person, but at 2 a.m. I drove an hour to her house, canceled her hospice, and did everything in my power to demand her care.

Basically, Nicolle almost died right in front of me in the ER. She was screaming and hallucinating with a temperature of 105.2F. Through it all, Nicolle checked to make sure I was taking my medications and drinking water every hour.

Today, Nicole was discharged with negative blood cultures and a new PICC line. We are completely exhausted, traumatized, and forever changed, but I am so happy to her still in my life.

I am continuing to write because it is healing and Nicolle always encourages me to continue my advocacy efforts. She’s always been the biggest supporter of my work.

Handwriting is overrated

“How’s your handwriting?” she asked. I’m seeing a new MCAS specialist and she is digging into every area of my life.

Even my deepest, darkest, writerly secrets.

“Uh, not great,” I said, thinking of the bottom cabinet drawer in my kitchen. The one I never open. A rash began to prickle along the right side of my neck.

“Can you give me a handwriting sample?” she asked.

I stretched my hand, picked up a black pen, and wrote the following:

This handwriting test is significantly more comfortable than skin biopsies or brain swabs, less nerve-racking than a blood draw, and certainly less disgusting than harvesting a poop sample. However, as my hand starts to cramp, I would argue a pee test is easiest.

Although my service dog may disagree.

While Sancho is a master at the bathroom stall tuck, I struggle to maneuver my body gracefully in cramped places. I am stunned when clinics do not have ADA compliant bathrooms, let alone expect me to collect a sample in a space smaller than a bathtub. My unsteady hands do not discriminate between water, precious coffee, or in this case, urine. Just ask my sometimes pee sprinkled poodle.

So, I suppose you have a valid reason for this test.

On a scale of 1-10, I want to cut my hand off now, because it’s cramping and shaky.

Keeya's handwriting sample — My handwriting sample

*****

I started journaling at age 7, when my grandma gave me a diary for Christmas. From then on, I knew I wanted to be a writer. However, it took several decades to realize I’m a humor writer.

Picture of Keeya's 1994 journal — December 6, 1994: “Today I desided to be a writer. I am a good speller…”

Aspiring writers are quickly taught the benefits of handwriting. A pen and paper help us access our feelings and unleash creativity. There’s even science to back it up. Julia Cameron, author of The Artist’s Way, goes so far as to say, “Writing by computer is a more shallow practice.”

My journals are my most prized possession. I have at least one for every year of my childhood, preserving my best stories. However, as I got older, handwriting became more difficult. I struggled to focus on my story as the ache in my hand became unbearable. Eventually, I got a laptop, but guilt reminded me I should be filling notebooks.

When I was diagnosed with MCAS, I stopped arguing with my body. I assumed my mast cells were causing the weakness in my hands. Handwriting was unnecessarily hard with keyboards and dictation so readily available. I accepted my disability. Kind of.

I stopped handwriting, but I kept buying notebooks. Lots of notebooks: standard size spirals, pocket pads, designer bound journals. I stuffed them into the bottom drawer of my kitchen until they weighed so much the drawer almost broke.

Picture of 37 notebooks of various size and two toy sized poodles — So many empty notebooks.

Photo of two notebooks made from vintage books — To be fair, some were gifts from friends with equally morbid senses of humor.

I’m still clinging onto an image of what a writer should look like, but this is definitely not it.

*****

As soon as I finished my writing sample, I chucked my pen across the table. My hand throbbed for at least 20 minutes. I sent my specialist a picture of the page.

“It looks good!” she responded encouragingly. She is more worried about my tremors and imbalance. I should be too, but right now I’m disappointed she didn’t definitively ban me from notebooks like she banned me from gluten. That would be so much easier than facing my feelings.

I know in my heart, or at least my hand, this is the end of The Drawer of Empty Pages.