Finding Balance Through Exercise

Finding Balance Through Exercise

Conquering Mt. Kilimanjaro with Myasthenia Gravis: A Journey of Strength and Determination

By Charlotte Laycock, as told to Keri Wiginton

Mountain Climbing

Imagine being told by a doctor that you might never exercise again. That was the reality I faced one year before summiting one of the world’s tallest mountains. You see, unlike most people, I didn’t embark on the journey to climb Mt. Kilimanjaro with the summit as my ultimate goal. My journey was fueled by a desire to challenge the unpredictable nature of myasthenia gravis (MG), a chronic autoimmune neuromuscular disease that I’ve been battling.

At the age of 34, I had always been incredibly active. But a few years ago, I experienced a sudden weakness in my neck while attempting a sit-up. Initially dismissing it as a pulled muscle, I carried on with my life, attributing my muscle problems to stress. Little did I know that this was just the beginning of my journey with MG.

Days turned into weeks, and swallowing became increasingly difficult for me. Some evenings, speaking became a struggle. I blamed it all on the stress brought about by the pandemic, work, and a recent breakup. I tried to work around my weakness, hoping that one day it would miraculously disappear. But then, one fateful night, when I swallowed a bowl of mussels, the mussel juice came out of my nose instead of going down my throat. That was the moment I realized I needed medical intervention.

Unfortunately, my first doctor misattributed my symptoms to stress as well. They even advised me to go on a vacation. So, I jetted off to Dubai, where fate had another surprise in store for me – I caught COVID. While sick in a foreign land, I woke up one day with the right side of my face drooping. Panic washed over me, and I immediately contacted my doctor back in England, who insisted that I return immediately.

However, I decided to stay in Dubai for an extra week despite my doctor’s urgent advice. I continued exercising because it helped alleviate some of my symptoms. By that point, going to the gym became a necessity just to be able to eat soup. It wasn’t long after I returned home that I received the news of my MG diagnosis along with the presence of a thymoma, a tumor on my thymus gland. My doctor prescribed pyridostigmine, a muscle-strengthening drug, and informed me that I would need a thymectomy.

Curiosity and a thirst for knowledge led me to extensive research on MG after my diagnosis. Although I didn’t find a concrete explanation for my experiences, I stumbled upon the idea that repetitive movements, excessive exercise, and fatigue could exacerbate weakness and fatigue in some individuals with MG. Despite not knowing anyone else with MG who exercised as much as I did, I decided to persist with my running and high-intensity interval training (HIIT) classes.

During one of my medical appointments, I arrived at my neurologist’s office in my workout gear after a short run. Much to my surprise, he adamantly discouraged me from continuing to run. Frustrated, I insisted that running actually made me feel better. However, he cautioned me that physical activity would only weaken my muscles further. At that moment, I felt devastated and began to fear that I might wither away.

Nevertheless, as an individual for whom an active lifestyle is ingrained in my identity, I wasn’t prepared to give up on my passion without concrete evidence that it posed a danger to my health. This disagreement with my first doctor prompted me to seek a second opinion, and I’m so glad I did. My new neurologist shared a different perspective. When I asked her if I could continue exercising, she assured me that running, mountain climbing, and engaging in HIIT classes wouldn’t harm my muscles. She simply advised me to listen to my body, stop if I felt tired, and, understandably, to forgo attempting to climb Mt. Everest.

Finding a balance between my passion for exercise and ensuring my well-being became paramount. Exercising played a significant role in helping me navigate my diagnosis and treatment. Even on the eve of my thymectomy surgery, I defied medical advice by running a 10k race. It was clear that my first doctor and I did not share the same understanding of my condition, lifestyle adjustments, or treatment approach. Switching to a new neurologist who supported my desire to continue exercising became a turning point in my journey.

Living with MG teaches you that the disease manifests differently in each individual. For me, intense aerobic exercise doesn’t trigger flare-ups; rather, my symptoms tend to worsen during times of illness or infection. While my medical team doesn’t fully understand why I’m able to run marathons and engage in other vigorous activities without issues, it is essential to approach exercise with caution, especially for those new to physical activity.

If you’re new to exercise and living with MG, it is crucial to take it slow and gradually incorporate safe movement into your daily routine. Start with short walks down your street or in the local park. Each day, challenge yourself to walk a bit further or sit on a bench that’s slightly more distant. Take literal step-by-step progressions; the goal is to honor your body’s limits and avoid pushing it too hard. Consulting with an understanding and supportive MG doctor can provide valuable guidance on incorporating exercise safely.

Personally, I’ve discovered that listening to my body is key. On days when I’m not feeling at my best, I opt for a leisurely walk rather than a long run or intense workout. I’ve also realized that I need to be mindful of my upper body strength limitations, preventing me from lifting heavy weights overhead or engaging in strenuous yoga poses. Your body will give you signals, and it’s crucial to pay attention to its needs.

The timing of my Mt. Kilimanjaro expedition, which was planned prior to my MG diagnosis, couldn’t have been more precarious. However, with the expert guidance and support of my medical team, we took every precaution to ensure my trip was safe. Months were dedicated to fine-tuning my medication, conducting various tests to gauge my body’s response, and simulating altitude conditions to assess the impact on my muscles.

Setting foot on the mountain required the green light from my medical team. Despite carrying muscle-strengthening drugs in my coat pocket throughout the climb, I fortunately never had to use them. However, there were moments of doubt, especially during the final ascent where the risks were heightened. Realistically, I knew that even if I could somehow be rescued, finding doctors well-versed in MG in Tanzania would be improbable.

Nonetheless, I knew my limits and evaluated my symptoms each evening. I asked myself: How am I feeling? Are my medications effectively managing my condition? Am I experiencing regular tiredness or MG-related fatigue? Stepping outside my tent on the night of the summit, I couldn’t see the outline of the mountain itself. Instead, the sight that greeted me was breathtaking – the shimmering lights of fellow hikers’ headlamps, creating an illusion of walking among the stars.

As the sun rose, illuminating the path to Stella Point, one of the summit destinations, exhaustion washed over me, but it wasn’t MG-related. I swiftly regained my composure and pressed forward. With each step, I felt a sense of accomplishment and triumph over my condition.

My journey with MG has been an ongoing battle, but conquering Mt. Kilimanjaro has shown me the resilience of the human spirit. Through careful guidance from my medical team, understanding my body’s limits, and persevering with my passion for exercise, I have proven that it’s possible to live a fulfilling life, even with a chronic illness.

Living with MG will always present its challenges, but by embracing a balanced approach to exercise and actively listening to our bodies, we can continue to find moments of triumph, reaching new heights both figuratively and literally.

So, if you’re living with MG or any chronic condition that may threaten your desire to engage in physical activities, remember that you too have the power to conquer your personal mountains, one step at a time.

Summiting the Mountain