How I resist an attack of the small stuff while living with ALS

I take pride in keeping a well-organized to-do list. Each day of the week has a set number of tasks, and each task is broken down into doable actions. It’s the “I’m under control and calm” approach. It’s perfect for someone like me who lives with ALS.

But life’s curveballs don’t care — they still show up. They were with me in full force last week. But I hit back with four key habits of resilience, habits that have helped me cope and survive all the small stuff that threatened my attitude and well-being.

What happened?

First, on the day my ALS clinic visit was scheduled, the weather was crummy. Gusty wind, rain, and cold temperatures made crossing the parking lot while pushing a rollator and wearing ankle-foot orthoses extra challenging.

Later, while tackling a new project at home with a tight deadline, interruptions came by way of a flurry of emails from friends that needed quick replies. Then, pencils rolled off my work table, and my computer seemed to take f-o-r-e-v-e-r just to fire up. Adding to my misery, the pneumatic tube in my office chair kept losing pressure, slowly sinking me until I was typing at the table height of a toddler.

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My essential four habits

As soon as I notice things going wonky around me, I implement four key habits. The first habit begins with putting myself first. It’s a combination of being aware that I’m feeling stressed and deciding not to be a martyr and sacrifice even more, and turning up the self-care.

But self-care? Isn’t that a selfish attitude? No, because once you’re stressed and overwhelmed, you’re no good to anyone. Nurturing yourself is actually the generous thing to do.

The second habit is taking care of my nervous system. This means getting enough sleep, exercising daily, and practicing mindfulness. My bedtime routine includes soft lights, no computers, and the prevention of risky nighttime walks to the bathroom.

Exercise is broken up into short bouts throughout the day. I begin each day with breath work and end the day with gratitude.

The important thing is to be consistent. No skipping or “I’ll do it tomorrow” self-talk.

My third habit during a stressful week is playing mind games. Neurobiologically, anxiety and novelty are opposite sides of the same coin. They’re both a response to uncertainty. For example, I pretend I’m in a driver’s ed training film. Mind games help me see curveballs as fun challenges instead of bummers.

Finally, there’s the ongoing negative conversation in my mind. “What if everything goes wrong? What if I don’t get there on time? Why did I say yes?” And on and on. This is the time to focus on doing one thing at a time, and once it’s over or accomplished, let it go. I move my mind on to the next thing, focus on it, and then let it go.

I try to be methodical and calm. In fact, I’ve often noticed that my calmness has influenced others around me to slow down as well, which creates a much better atmosphere for all of us!

These four habits go a long way toward helping me keep the small stuff, well, small. I think they’ll help you, too.

Let’s help one another live well while living with ALS.

Note: ALS News Today 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 other 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 ALS News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ALS.