How I navigate fun days without crashing due to MG
It's crucial to balance my enthusiasm and physical limitations
Seventeen years of living with myasthenia gravis (MG) has made me a pro at navigating daily life. I’ve learned how to handle both routine tasks and high-pressure days because being sick doesn’t mean I get to sit out on life.
Over the years, I’ve worked on big projects, organized events, and fought hard for my education. Through all of it, I’ve picked up some solid survival strategies to help me keep going, even when MG tries to slow me down.
The struggles of being easily excited
I admit that I’m easily excited. I find everything interesting, stimulating, and worth experiencing. But the truth is, my enthusiasm doesn’t always match my physical abilities. Here are some of the biggest challenges I run into:
1. The adrenaline trap: When I’m excited or on a high-energy streak, I feel unstoppable — until my body reminds me I’m not. A recent trip to Paris is the perfect example. I walked nonstop for days, soaking in every bit of the experience, until my legs completely gave out and I had to rent a wheelchair to continue.
2. Teaching until I can’t speak: Whether I’m teaching online or in person, I love it so much that I don’t realize I’m overdoing it. I talk and talk until suddenly my voice is gone and I can’t recover fast enough to continue. The result? Rescheduled lessons and frustration.
3. The aftermath of fun days: When I go all in on an activity — whether it’s swimming at the beach, a poetry workshop, or an artistic session — I have the time of my life. But then I’m stuck in bed for a week, barely able to move. The crash isn’t worth it, but my heart always fights against my body’s limits.
How I outsmart MG before it outsmarts me
Over time, I’ve realized that preparation and anticipation are my best weapons against MG surprises.
One of the biggest game changers for me has been a simple mental exercise: visualizing my day in advance. When I’m calm and resting, I take a moment to map out everything ahead of time, making adjustments so my disabled body can keep up. Here’s how I make it work in different situations:
1. Traveling smart, not hard: Before any trip, I spend an entire week planning. I research the routes, locate resting spots like coffee shops, and find places that rent wheelchairs in case I need one. I put all the details into an Excel spreadsheet or a travel app, organized by day and location, so I can quickly check my options when my energy starts to drop.
2. Surviving a teaching session: I take my medications before class starts. I force myself to sit every 15 minutes, even when I don’t feel like it. I design my lessons to include group activities every 20 minutes, giving me built-in breaks while my students stay engaged. I carry a flask of herbal tea with honey and sometimes coffee, both for hydration and for those extra energy boosts when I need them.
3. Outdoor activities and artistic workshops: This is the hardest category because these activities require movement. My trick? Warning people upfront. I make sure everyone I’m with knows my limits, so if I suddenly need a break, they don’t pressure me to keep going. The key is choosing activities that have a stopping point, so I can manage my energy without guilt.
The secret to a healthy day with an unhealthy body
If there’s one thing I’ve learned, it’s this: Preparation is everything. I’ve accepted that unexpected situations will happen, but if I prepare for the worst-case scenario, I won’t be as frustrated when my body decides to give up on me.
By adapting my daily habits, choosing manageable activities, and allowing myself to rest when needed, I get to enjoy fun days without completely crashing afterward.
It’s not perfect. It’s not always fair. But it works.
And that’s enough for now.
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.
About the Author
Rick summers
I’m trying to have golf days and not have 2-3 days of rest afterwards. My question is can or will protein shakes,banana's or something else eaten during the golf outing to not have the 2-3 days of rest afterwards