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A number of years ago, during my first year of learning to <a href="https://alsnewstoday.com/living-with-als-2/">live with ALS</a>, I promised myself that I&#8217;d show up every single day. At that time, my notion of <a href="https://alsnewstoday.com/columns/als-challenges-dont-keep-me-from-showing-up/">showing up</a> meant my goal was simply to get up, get dressed, and go sit in the other room! In other words, I&#8217;d show up to the day, and my life.
For many <a href="https://alsnewstoday.com/what-is-als/">ALS</a> patients like me, receiving a <a href="https://alsnewstoday.com/als-diagnosis/">diagnosis of ALS</a> is such a defining moment that we can only consider the easiest goals. But who knew that the simple goal of moving from one room to the other would morph into my overall life philosophy now, 13 years later? Let me share a recent example.
<h3>A feel-good moment</h3>
The other day, I returned home from getting my monthly haircut and reflected on how good I felt. Of course, having a fresh haircut always feels good. However, this time I was also feeling pride in my self-confidence and physical ability along with the afterglow of positive social interactions.
I&#8217;d worn an outfit that made me feel good and lifted my mood. I&#8217;d walked into the hair salon wearing my <a href="https://www.physio-pedia.com/Introduction_to_Ankle_Foot_Orthoses">ankle-foot orthoses</a> while pushing a rollator, yet I didn’t feel out of place at all. I could say my hellos and have short conversations without feeling embarrassed by my slow, low, ALS-affected voice.
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<h3>How I use showing up</h3>
What does my daily habit of showing up have to do with all that?
<ul>
<li>I show up for the day. Even when I’m spending the day at home, I get up and put on a nice outfit, even a little makeup and lipstick.</li>
<li>I show up for my exercise. I do several short bouts of exercises <a href="https://alsnewstoday.com/columns/movement-exercise-daily/">scattered throughout the day</a>. Many of the movements focus on maintaining and improving my breathing, posture, and leg strength for walking.</li>
<li>I show up for social interactions. Whether it’s doing my many online projects, going to medical appointments, or simply <a href="https://alsnewstoday.com/columns/my-go-along-strategy-living-well-als/">being a go-along</a> as my husband runs errands, I show up.</li>
</ul>
Looking back, I credit my current accomplishments to taking small, positive actions day after day, staying consistent, and being willing to start my life over again.
But it’s not easy to do, as many ALS patients know so well. Many of us feel the hopelessness of having to start over with a body that doesn’t work so well anymore. Or we feel useless that we can’t pursue our chosen profession any longer. Oh, boy, did I used to feel that way. But getting up and going tricked my mind into feeling better while it improved my attitude and influenced how my body felt.
That’s why just one small change, one small step of daily progress, can become a habit. String those good habits together to help nudge yourself forward.
Give showing up a try. It’s one more strategy that&#8217;ll help us learn how to live well with ALS.
<hr />
Note: <a href="https://alsnewstoday.com/">ALS News Today</a> is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or <a href="https://alsnewstoday.com/approved-treatments-for-als/">treatment</a>. 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.

I’m still showing up for each day, even though I have ALS

Sometimes <a href="https://alsnewstoday.com/living-with-als-2/">living with my ALS</a> isn’t a matter of <a href="https://alsnewstoday.com/columns/life-with-als-is-about-balance-effort-ease/">finding the right balance of effort and ease</a>. At times, I have zero mental motivation to make the effort in the first place! And from the comments I read on many social media sites, other <a href="https://alsnewstoday.com/what-is-als/">ALS patients</a> have felt this way, too. But I’ve found a unique way to recover my motivation and keep it alive, and I’m excited to share it with you.
Let’s begin with an example of how I lose motivation.
Before my <a href="https://alsnewstoday.com/als-diagnosis/">diagnosis</a>, I enjoyed effortless movement. I’d think, “Walk across the room,” and suddenly I’d be over there. Plus, more times than not, I was lost in thought and paying no attention to my walking.
But as my <a href="https://alsnewstoday.com/symptoms-of-als-2/">ALS symptoms</a> progressed, my awareness grew of how much effort was needed to do simple things. My shoes felt heavy and my leg muscles weak. Even with the help of my rollator, walking across the room required full mental focus. While urging my feet and legs to keep moving, my mind performed multiple balance calculations to avoid nearby furniture.
Sometimes — a big sometimes — I spent so much of the day in extreme mental focus that I’d sit in my chair and think, “Why bother walking across the room at all?”
[recommended-reading id=81530]
I know it’s a good thing to conserve my physical energy and stay put. But I also know that choosing “Why bother?” too many times is unhealthy for both my body and mind. I needed a way to make the effort less of an effort. And that can happen when it’s a habit.
Years ago, when I taught <a href="https://alsandwellness.blogspot.com/2016/05/cam-wellness-als-and-wellness.html">wellness and stress management classes</a>, one lesson was on how we can&#8217;t exert mental effort for long periods. It leads to <a href="https://www.bannerhealth.com/healthcareblog/teach-me/how-to-cope-with-mental-and-emotional-exhaustion">mental exhaustion</a>, burnout, and feelings of hopelessness. The better strategy is to reduce friction or ask, &#8220;What would make it easier for me to do this?&#8221;
<h3>How to do it</h3>
Reducing friction means removing an obstacle or coming up with a strategy that makes a task easier to do. My friction was not being sensitive to my daily mental fatigue. Often, I’d push myself through “just 15 minutes more” on my computer, which morphed into a full brain-drain hour.
To build a new habit, I decided that whenever I reached the “just 15 minutes more” point, that was my signal to stop. Then I perform a few leg stretches under my desk, extend both arms up and out, and assess my mental alertness.
When walking across the room, I focus on taking slow, even breaths and relaxing my shoulders.
Taking mental breaks and doing a few simple exercises in my chair helped eliminate those “why bother?” moments I was having later in the day.
Another example of how I reduce the friction of not doing daily exercise can be found in my column &#8220;<a href="https://alsnewstoday.com/columns/movement-exercise-daily/">My Tricks for Adding Movement to My Day</a>.&#8221;
Try my strategies to help your motivation. I believe we can learn to live well while living with ALS.
<hr />
Note: <a href="https://alsnewstoday.com/">ALS News Today</a> is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or <a href="https://alsnewstoday.com/approved-treatments-for-als/">treatment</a>. 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.

Tag: habits

I’m still showing up for each day, even though I have ALS

Finding motivation when I hit the ‘why bother’ moment