The invisible math of daily life with myasthenia gravis

Note: This column describes the author’s own experiences with Mestinon (pyridostigmine bromide). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.

There’s a kind of math you learn to do when you live with myasthenia gravis (MG). It’s a quiet, constant calculation that runs underneath everything. It’s not a kind of algebra anyone teaches you. It’s not written down in a pamphlet or explained in a doctor’s office. It’s the complex calculus and trigonometry you learn by living inside a body that doesn’t give you the same answer twice.

Before MG, I used to measure my days in hours, tasks, and plans. Now the markers are different. I pay attention to how long I’ve been awake, how long I can stay awake, and how much of that time will actually be usable. I notice how heavy my legs feel before I even get out of bed, how quickly my eyelids start to droop, how much chewing strength I have, and how long my voice will hold before it fades. These are just a few of the small, constant checks that shape every choice I make.

And lately, that math has shaped my work life more than anything else. Or rather, the lack of it.

Recommended Reading

April 16, 2026 News by Patricia Inacio, PhD

New US patient registry to track MG using real-world data

Making things add up

I’ve built a schedule for myself based on my body’s rhythm. One day is for writing this column and the bulk of moderating forums, with check-ins scattered throughout the week. Thursdays are for helping my husband with his small group personal training gym. Mondays and Wednesdays are for building out my consulting and education work in barrier‑free design. It gets two days because it’s my passion.

Even with that loose structure, there is still some flexibility built in, because the real deciding factor isn’t the day of the week, but how much energy or muddy-headedness I wake up with.

I keep tasks I can do from my phone for when I’m waiting for a full medication cycle to kick in. When the Mestinon (pyridostigmine bromide) is at its peak, I feel most ready to tackle the day. Computer work is a different calculation. Every morning, I have to decide whether I have enough strength to go upstairs to my home office or if today is a “work from the couch” day. It’s a small decision from the outside, but it shapes the entire arc of my day.

Everything takes longer than I think it should, and I’m learning to be OK with that and to stop comparing the current version of Shawna to the one I was even a year ago. This is why I stepped away from building and maintaining websites last year; I can’t be on anyone else’s timeline. I have to honor my body and my own rhythm.

On not showing your work

People see the choices, but they rarely see the calculations behind them. The decision about whether cooking supper to give hubby a break means I’ll be stuck on the couch for the rest of my waking hours. Or how appointments and my social life get scheduled around my infusion cycle, my sleep cycle, and the unpredictable dips that show up without warning. The silent calculations of how much talking I can do before my voice gives out, or what to order for supper on date night and how much chewing I can manage before the swallowing muscles stop working and I risk choking.

This is the math of chronic illness no one talks about because it’s invisible, exhausting, and constant.

There’s emotional math, too. Deciding whether explaining your condition again is worth the energy. Choosing between advocating for yourself or letting something slide because you’re just too damn tired to fight in that moment. Balancing your independence with the fear in your partner’s eyes when they watch you push yourself.

Every person with MG knows this math, even if their formulas look different from mine. Every person with chronic illness knows what it’s like to live inside a body that requires constant calculation. There is a weird benefit to this constant abacus: It makes you someone who understands their body in a way most people never have to.

There will be days when it feels overwhelming. When every calculation ends in a compromise and the numbers don’t add up no matter how you rearrange them. But there will also be days when the math works in your favor and your body gives you a little more than you expected. Those days are a true gift.

The invisible math of daily life isn’t something you master. But it is something you learn to live with.

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.