I’ve written before about how unpredictable my daily energy levels can be because of Duchenne muscular dystrophy (DMD), especially because of the significant weakness in my muscles. I want to discuss just how this can have an impact on my day-to-day life. It’s a struggle, but I will also mention some of the ways I’ve overcome it.

I compare my level of energy to the colors on my wheelchair joystick screen that indicates the battery supply. Green is good of course. Then there’s yellow followed by the red danger zone. My week is like a constant fluctuation of colors when it comes to my body’s battery life.

One of the biggest metaphorical scars I have leftover from this issue are the opportunities I’ve felt were in the best interest of my health to decline. This has included having to turn down several job offers throughout the years. In addition to having doubts I’d be able to handle a particular workload, I feared the stress it would incur: With my fragile heart health I’ve been required to have a keen eye on it. I have to keep the same thing in mind when I write any story. This has made me perceive myself as a failure before.

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In a more casual area, I have often canceled plans with friends because of being fatigued. This made me think I was letting them down. Therapy has been a great tool in relinquishing these burdens. Instead of believing I’ve failed, I now frame it as doing my best with the cards I’ve been dealt. Also, a true friend wouldn’t judge me for having ups and downs with my energy levels.

From reading this you might be able to deduce that I’m not much of a morning person. Typically the process of eating breakfast, following my daily hygiene, and getting dressed will take close to three hours. So, if I have somewhere to be like a doctor’s appointment in that timeframe, it can be a struggle to expedite my routine.

Just a brief trip somewhere can become an ordeal. Depending on the circumstances, I could need to have someone help me get on a new shirt, foot braces, and shoes or a coat. These seemingly simple tasks can be tiring for me before I even get out the door. When I get back home I’m often too drained to do much more. This is pretty aggravating because I’m 28 and want to go out so much more like my peers.

The number one way I combat my often depleted energy is by giving my body the rest it needs to function effectively. To recharge for the second half of the day I find it very beneficial for me to lay in bed for a little over an hour at a minimum. I usually make sure to get at least 8 hours of sleep each night. Two hours before I go to bed I take melatonin to have a better chance to facilitate this. 

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I also try to listen to my body. For example, if I feel like my heart rate is elevated, I know that I should probably take at least a short break from what I was doing. In this case, I might decide to do a relaxing activity. This can be playing video games, watching movies and sports, listening to music, and these days, solving Wordle. That last example might not actually be the best if you want to stay calm.

If you’ve read some of my previous columns you might have noticed that I often tell myself affirmations for reassurance in difficult moments. The motivational messages I have tattooed on my arms are a visual representation that I use. The other day I was feeling down because I was tired, lethargic, and wasn’t very productive. That night I was listening to a podcast hosted by an athlete I had interviewed during my college years. 

They have a rare medical condition of their own and had an episode where they talked about how they dealt with being sick on days when they had a lot planned. It actually inspired me to write this. Like me they use affirmations, and one stood out to me. The phrase went “I give myself permission to prioritize my well-being in ways that work for me.”