After a long hike, I want to keep discovering what my body can do

Walking has probably been one of my biggest griefs since myasthenia gravis (MG) entered my life. I still remember times when my legs were so numb and exhausted that I simply couldn’t take another step.

Walking had always been a way I cleared my head. I could wander around, change my surroundings, think about something else, and come back feeling a little lighter. Losing that freedom was much harder than I expected. But a few months ago, I signed up for one of my biggest challenges yet — training to run 8 km (5 miles).

In the end, I didn’t achieve it, but training for it changed something. I went from walking a maximum of about 15 minutes to walking for more than two hours without feeling like fatigue was going to shut my body down. That felt huge.

One place I walk is along a flat area by the sea, where a 10-km (6.2-mile) walk has become almost like a playground for me.

Then came the zoo.

A friend of mine suggested that we join an organized community hike at the local zoo. The route was hilly, but somehow my brain decided that 9 km (5.6 miles) of hills was equivalent to 10 km on flat ground. I went in with a lot of confidence, but quickly realized that my brain had terribly miscalculated. The hike was brutal on my feet, knees, and legs, which kept threatening to give up. It was at night, when my body tends to be much weaker, and I ended up walking almost nonstop from 7 to 11 p.m. It was also very hot outside — above 40 C (104 F) — and I failed to check whether there was a medical team, transportation, or any backup plan in case I became too weak to continue. It was probably one of the worst decisions I could have made.

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Challenging myself, not risking myself

I was lucky that my dad was with me. He stayed behind me and kept encouraging me when my legs were struggling, but what if I had been alone? It could have turned into my worst nightmare. Me, sitting on a hill, crying because my legs had decided they were done, while everyone else kept walking. Maybe some people would have stopped out of pity and tried to help me, but I had no idea how I would have gotten home. It’s not like they were going to bring a horse to escort me out of the zoo.

My walks by the sea, which are only about 4 km (2.5 miles) from home, slowly made me feel safe again. They gave me confidence, and that was something I desperately needed after years of being fearful about what I could and couldn’t do. But feeling confident and being safe are not the same thing. There is a difference between challenging myself and taking unnecessary risks. I need to remember that difference.

Continuously learning with MG

The experience reminded me that I will probably never know everything about my body and its capacities. They are constantly changing, and sometimes my brain is simply too optimistic. I may think I can ignore MG, but MG will still invite itself to the party.

I spent the next two days after the hike lying down with soreness, pain, and extreme fatigue, but my brain was somehow sparkling with happiness and pride. That hike remains one of my biggest achievements because I did something that once felt completely impossible for me.

I probably won’t do it again, but I will keep challenging myself. I just want to do so more consciously. I want to keep discovering what my body can do without forgetting to ask what it needs. Maybe that is what learning to live with MG really means for me — not being afraid of my body, but not being blindly confident in it either.

And even if there is a next time, before I find myself walking through a zoo at 10 p.m. with numb legs, I’ll definitely think first about a way out of there, because, apparently, “maybe the lions can escort me home” is not an actual emergency plan.

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.