The Base: Sleep

I structure my life to allow for extra sleep when necessary and plan my day carefully to maximize a good night’s sleep. For example, I don’t eat or drink within three hours of bedtime. I decrease external stimulation, too—dimming lights and limiting noise. My nightly bath ritual with lavender essential oil is the metaphorical equivalent of closing the window shades. My morning ritual is equally important. I allow time for my stiff body to awaken. I stretch in bed, which helps me get up safely. And I never schedule anything in the morning.

First Level: Eat

After years of gastrointestinal distress (a common symptom for people with my condition) I made two significant changes. First, I eat fewer meals out. When I do go out for a meal, I select restaurants based on the quality of ingredients. The meal may be more expensive, but my body appreciates it. Second, I eat five to six small (the size of my fist) meals a day of mostly organic plant-based foods. Because of swallowing difficulties (dysphagia), I eat slowly and mindfully and consider meal time sacred.

Second Level: Exercise

I try to move my body as much as possible every day. At least twice a week, I attend a yoga class. I wear a Fitbit watch to monitor my steps, which motivates me to meet a friend for a walk or do household chores. Physical activity keeps my gastrointestinal system happy and boosts mood, but I’m careful not to overdo it.

Third Level: Relax

Calming my senses is important, so that means taking regular breaks from looking at my computer, which is not calming. Just sitting with one of my cats and getting some quality fur time is relaxing. Or going without radio or TV and just listening to partial silence for a few minutes. When I feel especially frazzled I hold a small brass bowl and tap it a few times with a wooden striker. The sound is pure and resonates through my nervous system. In public, I avoid loud noises and bright lights. My ultimate relaxation comes at night with my wind-down bath.

Fourth Level: Stimulate

Three years ago, I started a health and wellness podcast. Although I publish episodes semi-monthly, every day I do something related to a future episode. This labor of love is gratifying on so many levels and I firmly believe that having a passion is an antidote for a chronic health condition.

Fifth Level: Socialize

Engaging with people is an integral part of my self-care, and I make sure it counts. That’s why I seek out positive people and situations. I hope to remain compassionate, but I can’t handle being around much negativity. What affects me emotionally inevitably affects me physically. My social network thrives through local yoga classes, in-person and virtual support groups, as well as a monthly book club held at my home.

I’ve often thought of self-care as a full-time job. I’ll continue my pyramid practice until I retire.

Leslie Krongold, EdD, lives in Alameda, CA, where she leads support group meetings for the Myotonic Dystrophy Foundation. She also writes a blog and produces a podcast series called Glass Half Full.