Learning to Embrace Relapse with Muscular Dystrophy

Leah Leilani avatar

by Leah Leilani |


Just eight years ago, a four-hour trip to Disneyland would barely touch me. I’d go on a few rides, have a bite to eat, come home, take a nap, and be ready for school the next day. These days, even having my friends over at my house to hang out leaves me exhausted for days.

What is a relapse?

When you hear the word relapse, you probably think of a recovering addict. For me, it means that I have spent the finite amount of energy my body has made. It means that for the next few days, all priorities, such as bathing and brushing my teeth, fly out the window and I must focus on regaining that precious energy. I must stop all activities, including drawing in my notebook or painting my nails and focus on getting complete and utter rest.

What is it like?

It’s a lot like having the worst flu of your life in that your entire body is achy and weak. It’s a struggle to keep my eyes open to watch television. Thinking and keeping up a conversation can be impossible. My digestive system becomes dysfunctional, and it feels like cinder blocks are attached to my limbs. Oh, and there’s the heart palpitations, which can send me to the emergency room if they’re bad enough.

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One reason my disease is so misunderstood is that people usually only see me once I’ve saved enough energy to keep going. They don’t see the aftereffects once I’ve spent my energy, because it takes some time for the adrenaline to wear off. I guess you could call it a grace period that can sometimes last up to a day. But as my disease has progressed over the years, I’ve noticed that it takes less time for the relapse to set in.

Is it worth it? 

Before I expend my energy, I take a moment to ask myself: “Is it worth it?” One of the worst relapses of my life was after middle school. I had decided that I wanted to participate in every eighth-grade activity possible. I presented my portfolio for the exit exams, attended the graduation ceremony, and performed in the school talent show. I didn’t care about my disease — this was my last chance to be an eighth grader.

Later, as I stared up at the ceiling of my hospital room, I wondered if it had been worth using up all of my precious energy. So, these days I take extra precautions. I’m aware that an outing or event could result in a hospital visit, but I know I still have to live my life, and a few calculated risks are OK if I’m mindful of the potential consequences. The question is: Am I willing to embrace the relapse?


Note: Muscular Dystrophy 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 another 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 Muscular Dystrophy News or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to muscular dystrophy.


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