How I check in with myself to improve how I’m living with ALS

Taking a pause to assess how I'm doing helps me avoid mistakes, cut stress

Dagmar Munn avatar

by Dagmar Munn |

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Although I’ve accepted the many beeps, alerts, and reminders that pop in and out during my day, I’ve also developed the habit of selectively tuning out a few of them. I recently learned that’s not a good habit to have, especially because I live with ALS and some alerts are essential. The trick is to figure out which to listen to and which I should disregard. Here’s how my life lesson unfolded.

It was a calm afternoon, and I was seated at my laptop typing away on a draft for a new column. At the one-hour mark, I felt fully immersed. Opening background tabs, researching quotes, copying links, you know, the typical stuff we do when wrapped up in a project. Sensing the finish line was near, I dug in. I told myself, “You can do it, just a few more minutes.”

But my brain was feeling mushy, my back began aching, and my rear end was numb. “Just a bit more,” the voice in my head urged me on. Finally, a dull buzz hijacked my thoughts and suddenly, poof, I knew I had to stop.

In a mental daze, I began the process of closing tabs and backing out of my work. Bleary-eyed, I stared at a box on the screen with the prompt, “Save?” Impulsively, I clicked “no.”

Wait, what? Noooooo!

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Immediately I knew what happened. The entire document was gone. Nada. No hope of salvaging it from my laptop’s recycle bin. Gone. Swallowed up in the vapors of Wi-Fi. Plus, I just lost 90 minutes of my valuable “ALS time.” Living with ALS has made me sensitive to how I spend or waste my time.

But what really rang my bell was knowing I ignored all the signals my body was sending me to take a break halfway through my project. My inner voice tried to get my attention. I should’ve noticed. I should’ve listened.

My thoughts zoomed back in time, to the months just before my diagnosis of ALS. I spent those months ignoring my body’s signals that something was amiss. Even though my leg muscles twitched and cramped, I’d tell myself, “It’ll go away.” I pushed on with my workouts. I put off going to the doctor. But after several events of tripping and falling, I conceded and made the appointment.

Following my diagnosis, I promised myself that I’d be mindful and always listen to the signals my body was sending me. But life got busy and filled with distractions. I jokingly say that it was simple back when my only mental distractions were worrying about my future and yearning for the past. Now the latest news, social media posts, emails, and endless rabbit holes on YouTube compete for my thoughts.

Me, myself, and I

I count on three inner voices to get me through the day. One is my inner critic. The second is motivation, which encourages me onward. The third voice tells me when it’s time to check in. It’s my proverbial blinking red light on my mental dashboard. Unfortunately, the first two voices are louder than my last one. I constantly have to work to keep its volume high. I do that by checking in.

Here’s the thing: Everyone, especially those of us who live with ALS, needs to check in.

How to check in

As I wrote in “How to Build Your Own ALS Stress Toolkit,” I check in every so often by stopping what I’m doing to ask, “How do I feel? What do I need? Who or what can help me?”

For example, if I’d been listening to my inner voice on the afternoon I accidentally deleted my document and noticed my inner voice’s blinking red light, I would’ve answered the three questions this way:

How do I feel? Tired.

What do I need? To take a short break.

What can help me? Pushing away from the computer, focusing my eyes on something outside the window, and doing a few stretches.

Checking in helps me avoid mistakes. It helps me use my time wisely and helps my body and brain feel less stressed.

Do you have times when you push yourself beyond normal limits? Or ignore your body’s signals to take a break? Try my strategy of checking in. Let’s learn to live well while we live 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.

Martha Eichler avatar

Martha Eichler

Thank you, Dagmar! My husband was diagnosed with bulbar onset ALS on 8/29/23. I enjoy your columns and find them valuable. Since winter, we've been dealing with a big leak in our house and insurance nightmares. So that has added to our burdens. I enjoy hearing from someone with ALS who is living life to the fullest potential possible!

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