Taking back control of my life by practicing caregiver self-care

Life feels a little messy right now. It feels like I have no control. As a full-time caregiver to my three sons with Duchenne muscular dystrophy (DMD) and a mother to my seven children, my days are often timed down to the minute and centered around their schedules and various needs.

I remember feeling similar after my three sons Max, 17, Rowen, 14, and Charlie, 12, were diagnosed with DMD. I was working at a Catholic school, and a priest told me to go for walks. I needed to decide when and where I would walk and what route to follow. He told me this would return a little control to my life. This advice has stayed with me throughout many stressful periods of my life.

This advice may seem random, but the priest knew I enjoyed exercise and working out. I was a college athlete, and for a decade or so after college, I ran half-marathons and was active in classes at my local YMCA.

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Then, during the COVID-19 pandemic, my husband and I purchased equipment for a home gym in our garage. I also became an avid dog walker and walked my two dogs, an Aussiedoodle and a toy Australian shepherd, several miles a day.

Exercise is something I have always enjoyed; it has never seemed like a chore to me. I’ve always lived an active lifestyle, which has helped me navigate the world of rare disease caregiving in many ways.

In the early years after diagnosis, when my three sons used mobility scooters and we had no ramp or lift in our van, I was strong enough to lift them into the vehicle. I’ve always been able to lift and transfer the boys, and I had the endurance to make it through marathon days at our neuromuscular clinic or on outings where I pushed the boys in strollers or pulled them in wagons.

Hitting the reset button

I’ve always known that as a caregiver, I must take care of myself to take care of my family. But currently, I find myself in need of a reset and more control in my life. I’m writing this as I sit in a pair of leggings that are a little too snug and leave a bit of extra flesh spilling out over the waistband. Thank goodness for extra-large sweatshirts!

I have gained 7 pounds since the start of the new year. My workouts have been limited because of the weather and my children’s increasingly busy schedules. There is always an appointment, a ride that needs to be given, or someone  who needs help.

And after my oldest son, Max, fell two weeks ago and seriously injured his leg, I’ve had bursts of cuss-at-the-world moods that include eating my feelings. I am eating everything in my wake!

This week, I’m starting over. I have little to no control over my life right now. Duchenne has a way of claiming my thoughts, sleep, and health. It has a will of its own, and as much as I resent that, I can do little about it.

I try. We see world-class doctors, the boys have been in a clinical trial for years, and we follow best-care practices. But the disease still progresses.

So instead of focusing on what is out of my control, I want to focus on what I can control and get my weight and fitness levels acceptable to me again.

I will focus on what I eat; I can control what I put into my body, how often, and how much. I have practiced intermittent fasting for about three years, but my fasting window has been small and inconsistent in the last few months. So I will fast better and make healthier food choices when I break my fast each day.

I will adjust my schedule or — gasp — ask for help to get a workout each day. For example, I love walking and weightlifting, but on days when I don’t have time, I will focus on just moving. I’ve found lots of great workouts for the living room on Pinterest that will work.

I’m taking back some control. I need to feel a little bit of power. I need to say to this progressive nightmare of a disease to take a back seat, even if it’s only in this area of my life. And in doing so, I am taking care of myself in order to take care of my family.

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.