I am learning to seize the day, even when myasthenia gravis wins one back

I wanted to live life to the fullest this year. I wanted to act as if I had no chronic disease, to try every activity that crossed my mind, to be more social, more active, and, in the end, simply happier. After years of feeling trapped inside an invisible cage called myasthenia gravis (MG), it was time for me to stop avoiding anything that might be tiring and start showing up for my own happiness, because having fun is important, too.

The first challenge I gave myself was to improve my health. Under the careful supervision of my doctor, I started a calorie deficit and went from 102 kg (225 pounds) to 90 kg (198 pounds) in two months simply by paying attention to how many calories I ate each day. I have never felt lighter. My knees and ankles are so much happier, and I plan on continuing these healthy habits.

I also challenged myself to participate in a marathon. I didn’t actually take part in it, but training for it completely changed my life.

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I started walking longer distances every day, and it felt like magic to be able to go outside consistently again. Even when my legs were burning and my thighs became heavier with every step, I kept going. I learned to schedule regular naps before and after my walks to protect my body from triggering an MG flare. I cannot describe how proud I am of this achievement. Today, I can walk again, not just short distances, but up to 10 kilometers.

Going out for dinner also became a hobby, but even more than restaurants, I started saying yes to every workshop I found online. Painting, pottery, archery, conferences, training sessions, anything that could teach me a new skill or simply allow me to experience something different.

These activities helped me socialize and think about something other than my job or my condition. Every workshop felt like opening the door to a new universe. Because they were short experiences, I never felt the need to explain that I had MG. For the first time in years, I had little spaces where I could simply be Sarah, not Sarah with MG.

Then came the activity that was simply too much.

A single day to MG

I decided I wanted to learn how to ride a bike. I never had the chance to learn as a child. I remember falling over and over again, getting frustrated, and eventually giving up. So when a friend sent me an announcement that a local sports association was organizing beginner cycling lessons just a few minutes from my house, it sounded perfect. It was close, my friend wanted to join, and learning something new together felt exciting.

Unfortunately, it ended in disaster.

With the summer heat and the heavy humidity in Algiers, Algeria, I fainted before I was even able to pedal properly. From the very beginning of the lesson, my arms kept giving up, my legs were shaking, and I could barely catch my breath. Yet somehow, I convinced myself that it was only my poor cardio, instead of recognizing that MG was already warning me to stop.

About 10 minutes after the lesson started, my vision became blurry. My ears were pounding, and I eventually fainted from exhaustion. It had never happened to me before, simply because I had never pushed my body that far. That night was filled with breathing difficulties, and I only started feeling like myself again two days later.

That experience reminded me that MG will probably never leave my side. Even with training, progress, determination, and constant improvement, it will still win sometimes. It is heartbreaking but strangely encouraging at the same time.

After stealing so many years of joy from me, MG has only managed to steal a single day this year. And for that, I am deeply grateful.

Note: Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.