Guest Voice: I have MG, but my daughter and I are in it together

When I sat down to write a column about parenting with myasthenia gravis (MG), I had to give it a lot of thought. So much has changed for me since my diagnosis two years ago.

I’m a single parent. My daughter was conceived with a donor, so it’s just the two of us. You can imagine what went through my head when I sat down with my first neurologist. I then went home and did what every newly diagnosed person is advised not to do, which is read everything. The more I read, the worse it got.

I’m a realist and, on a bad day, a pessimist, which isn’t the ideal personality to bring to my diagnosis. Luckily, my daughter was 10 at the time, with boundless energy and a very positive outlook on life. Between the two of us, we averaged out to roughly normal.

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Mostly, I remember being tired all the time. I was working full days, and by the evening, there was very little left. Oh my word, homework! Long division! Drawing mind maps for geography exams! Anyone who has tried to do that with no energy will know how tough it is. Weekends weren’t much better. I would look at the couch longingly, but it’s hard to answer its call when it’s playdate time, and there are snacks to prepare.

I tried to explain the fatigue to her, but I don’t think anyone understands MG fatigue unless they’ve had it. It’s not easy for a 10-year-old to make sense of why her mother, who looks perfectly fine, has nothing left by the end of the day. I felt guilty about not showing up for her, and I spent a lot of time asking myself why this was happening.

Making plans for our future

Before the diagnosis, I had promised her a trip to the Drakensberg mountains in Southern Africa. Hiking has always been something we do together. I didn’t want to give that up as well, so I needed to get stronger. I started seeing a biokineticist. He would take me through a session and leave, and I would spend the next hour lying down to recover. It wasn’t the most promising start for someone planning a hiking trip.

I also overhauled my diet, switched to keto, and kept my meals nutrient-dense, even on the days when all I wanted was cookie dough ice cream and a movie, and there were plenty of those. Following a ketogenic diet has worked incredibly well for me. My symptoms are mostly in remission.

This means that every slice of cake at a children’s birthday party now comes with a cost-benefit analysis. When I’m tempted, I ask myself whether any food is worth undoing that progress. Or if it’s worth going back to long days on the couch. Nothing has made the cut yet, although a sourdough croissant has come close a few times.

In July this year, we went to Los Angeles and walked more of the city than most people who live there ever do. It was incredible, and it made all those hours with the biokineticist worth it.

I still have days when fatigue hits me. On those days, we binge-watch a series on Netflix, she with her popcorn and me with my 90% cocoa Lindt bar, which is about as indulgent as keto gets. I love those days, too.

I know that remission can change, and it does gnaw at the back of my mind. But I am so grateful for every day we get to share. We have big plans for the next few years so my daughter can work toward her dreams, and I absolutely plan to be right there with her.

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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.