How I’m Destressing My Life With Duchenne

Adult life is overwhelming. There’s so much to do. You have to hold down a job, pay rent or mortgage, prepare for retirement, spend quality time with those you love, learn new skills, find time for rest, and pursue a hobby or passion.

Then add Duchenne muscular dystrophy on top of it. That probably means you’re scheduling doctors’ appointments, balancing medication side effects, making sure your wheelchair and medical devices are functioning properly, and figuring out the best care for a disease that few know how to pronounce.

As I’ve gotten older and more independent, the weight of the world has felt even heavier. That’s been catching up with me lately, and it’s been elevating my stress levels and thus negatively affecting my health.

Many have called stress a silent killer, and I believe that’s true. I’ve recently had heart palpitations, and while I don’t know why I feel them more now than before, it’s been yet another wake-up call that I need to reassess my life and find some calm.

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In the last couple of weeks, I’ve learned to breathe better, limit my worry over things I can’t change, focus on one task at a time, and put less pressure on myself. I’ve felt my health has improved as a result, and with a condition like Duchenne, that should be my No. 1 priority.

Part of my improved health comes from being in tune with my body, knowing when something is wrong, and making sure I address that issue. But being in tune with my body starts with taking a second to breathe. Taking big breaths through my nose and exhaling through my mouth has helped me feel more relaxed when it feels like there’s no stop to the stream of thoughts going through my brain.

This practice seems so simple, but it can pay dividends down the road, especially as I deal with a complex disease. There are a lot of things to think about — working with insurance, managing my caregivers, ensuring I find enough sleep at night, and purchasing new accessibility tools, such as a shower chair that fits better in my bathtub. Breathing gives my mind time to compartmentalize and focus on the task at hand rather than everything all at once.

I haven’t yet created a system to take time to breathe and meditate, but every time I remember it, my to-do list feels less overwhelming. I plan to rely on my Apple Watch to remind me to breathe and guide me through mindfulness exercises.

I think too much, not unlike most people. How did that person react to my attempt at a joke? Am I being a good friend? I lie in bed going through my journalism stories, reminding myself I need to call a source or fix a random sentence in the middle of the article. I remember to drink water, but then I realize I can’t because it’s late at night, and I don’t want to wake my assistant more than necessary so I can go to the bathroom. I think about ways to insert myself into a conversation and then settle with the line I think is least embarrassing.

All of that thinking is stressful and unnecessary. To combat it, I try to focus on what’s going on in front of me. I don’t need to be writing and thinking about what to say to insurance when I inevitably fight them on my next power chair. When it’s the right time, I’ll come up with something. That has freed up more brain power and made me more peaceful.

In my 25 years of life, I’ve found that I put too much pressure on myself to perform professionally and grow my career. That stems from comparing myself with able-bodied people. The reality is I have Duchenne, a fatal, muscle-wasting disease. I need rest. I can’t push myself to the same limits they do.

It helps me when I relax and remember everything that I’ve already done. I’m learning to be satisfied with myself. I have to keep reminding myself that I’m OK with where I’m at. Obviously, pushing oneself is important, but like all things, there are limits.

I preach about finding peace and calm, but sometimes even I can’t find it. In the midst of doctors’ appointments, relationships, pursuing my passions, and advocating for others with Duchenne, it can be extremely difficult to find that inner Zen. But it is possible, and over the last couple of weeks I’ve proved to myself it can be done. My body is thanking me.

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, and are intended to spark discussion about issues pertaining to muscular dystrophy.