One year prior to summiting one of the world’s tallest mountains, a doctor delivered the shocking news that I might never be able to exercise again. Unlike most people, my goal for climbing Mt. Kilimanjaro wasn’t solely focused on reaching the summit. This was because I have myasthenia gravis (MG), a condition that is unpredictable despite being fairly stable nowadays. My aim was simply to take one step at a time each day.
It’s hard to put into words how it felt to look out at the world from nearly 20,000 feet in the air. There was a sense of relief and exhaustion, but not like the exhaustion brought on by MG. It was just regular tiredness. And I felt a sense of elation because I had surpassed everyone’s expectations, including my own.
I have always been incredibly active, but a few years ago I experienced a sudden weakness in my neck while attempting a sit-up. I initially brushed it off as a muscle pull that would heal on its own, but the symptom persisted and I began to struggle with swallowing. Some evenings, speaking became a challenge. At the time, I attributed these muscle problems to stress from the pandemic, work, and a recent breakup. I continued to work around my weakness, hoping that one day I would wake up feeling better.
I discovered that engaging in midday exercise actually boosted my strength. Most days, I would go for a run followed by a substantial lunch. However, one night, after eating a bowl of mussels, I experienced a disturbing incident where the mussel juice came out of my nose instead of going down my throat. That was when I realized I needed medical assistance.
The first doctor I visited shared my initial belief that stress was the cause of my muscle problems. MG was never mentioned. They suggested I go on vacation, which I did. During my trip to Dubai, I contracted COVID-19. While ill, I woke up one day with the right side of my face drooping. My eyelid sagged, I couldn’t smile, and I struggled to open my mouth. When I reached out to my doctor in England, she advised me to return immediately as she suspected she knew what was wrong.
Although my COVID symptoms had subsided, I chose to stay in Dubai for an additional week. Despite everything, I continued to exercise because it helped me function. By this point, I had to go to the gym every day just to have enough strength to consume soup. Upon returning home, I received the news that I had MG along with a thymoma, a tumor on my thymus gland. The doctor prescribed pyridostigmine, a muscle-strengthening medication, and informed me that I would require a thymectomy.
Following my diagnosis, I delved into researching MG and came across the idea that repetitive movements could trigger weakness and fatigue in some individuals. While I couldn’t find an explanation for my specific experiences, I couldn’t shake the feeling that cardio exercises somehow countered some of my symptoms. Even though I hadn’t come across anyone else with MG who exercised as much as I did, I persisted with my running and high-intensity interval training (HIIT) classes. There was a point when I showed up at my neurologist’s office dressed in workout attire after running a mile and a half. He strongly advised that I discontinue such activities, warning that physical exertion would only weaken my muscles.
Subsequently, I discovered that exercise (within certain limitations) could actually benefit individuals with MG. However, at the time, I was devastated. I became fearful and worried that I might waste away. Despite this setback, I knew that being active was an integral part of my identity. I had run marathons and climbed mountains for a significant portion of my life, and I was not willing to give up those activities without substantial medical evidence that they were dangerous. Thankfully, when I switched to a different neurologist, she assured me that running, climbing mountains, and participating in HIIT classes would not harm my muscles.
According to my new doctor, I could engage in any activities that felt good to me, but I needed to stop if I became tired. She only advised against attempting to climb Mt. Everest, a reasonable precaution.
This illness affects individuals differently. In my case, my symptoms tend to flare up most when I am sick or have an infection, rather than during aerobic exercise. Although my medical team isn’t entirely sure why I can still run marathons and engage in intense exercises without experiencing issues, it is crucial for newcomers to exercise to ease into it gradually. Attempting too much too soon increases the likelihood of an MG flare or crisis. It’s important to consult a supportive MG doctor to determine how to safely incorporate movement into your daily routine.
I often suggest that individuals with MG start by taking short walks down the street or to a nearby park. The next day, they can aim to sit on a bench that is further along the route. It’s literally a step-by-step process. If they’re feeling good, they should continue. However, it’s crucial to listen to your body and recognize your limits.
On days when I’m not feeling my best, I opt for a walk instead of a long run or a trip to the gym. I know that I shouldn’t lift heavy weights above my head or engage in upper body strength-intensive yoga poses. Weak arms could lead to face-planting on the floor. As a certified yoga instructor, I have experienced this a few times myself.
If my body had shown signs of an MG flare during my mountain climb, I wouldn’t have hesitated to turn back.
I had booked the trip to Mt. Kilimanjaro prior to my diagnosis, and I considered canceling it. However, with the support and guidance of my neurologist and surgeon, I felt confident that I could push through. Months were spent fine-tuning my medication and testing my body in various scenarios to ensure my symptoms were stable prior to my departure. I even exposed myself to an altitude chamber to observe how my muscles would react with less oxygen.
I would not have embarked on the mountain journey without the approval of my medical team. During the climb, I carried muscle-strengthening drugs in my coat pocket as a precaution, although I never needed to use the pyridostigmine. There were moments of concern, such as the night before reaching the summit when I was at a high elevation, beyond the reach of helicopter rescue. Even if help had been available, I was in Tanzania, unsure if there were doctors familiar with MG who could treat me.
I constantly monitored my symptoms each evening, evaluating how I felt and whether my medications were effective. I needed to discern between normal fatigue and MG-induced exhaustion. Once I left my tent on the night of the summit, I knew that every step upward would take me further away from the safety of camp.
During the final climb in the darkness, I looked up towards where the peak should be. What struck me was not a discernible outline of the mountain, but the lights emanating from fellow hikers. It was impossible to distinguish where their headlamps ended and the stars began. It genuinely felt like I was walking in the sky.
Just as I reached Stella Point, one of the three summit points, the sun began to rise. Exhausted, I collapsed, but not from MG-related fatigue. I gathered my strength and pressed forward.