Leaning into my options on an off day to help get back on track
When living with ALS gets 'lifey,' start by taking two deep breaths
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As soon as I reached for the sock, I knew it would fall to the floor. And it did.
I retrieved it by slowly bending sideways in my chair, stretching my arm in its direction, and with a mighty oomph, finally seized the soft fabric.
That was just one speed bump among the many that confronted me that particular morning. I was simply trying to get dressed, but it felt as if I were swimming against the tide. In the logical side of my brain, I knew my ALS-affected body was partly to blame, but my emotional, illogical side screamed that clothing conspiracies were lurking in the back of my closet.
I was having an off day, for sure. Everyone has them every so often — those days when life just gets lifey. But the feelings of heaviness in my legs, my clumsy fingers, and an overall lack of energy told me I needed to just stop and do nothing for the rest of the day. But I had to show up for a haircut appointment in only one hour, so I begrudgingly kept going. My nervous system felt overwhelmed, and I wondered why.
Reflecting on my week, I remembered the three-hour visit to my ALS clinic. It wasn’t an extraordinary amount of time to spend with the clinical team, but with all the talking, the physical testing, the cold temperature in the exam room, and the stifling heat outside, I arrived home exhausted. The next day brought another outing, followed unfortunately by a night of restless sleep.
Pondering your options
Usually, when I have back-to-back events, I’m careful to schedule a few days of recovery time, which I did. But this time, the strategy didn’t work. My mind raced toward another technique I often use: accepting the “swing” from one task to the next. Instead of fighting the transitions, I move with them. It’s a mental shift of using momentum, rather than starting from zero energy every time.
But today, my energy was at absolute zero. My mental-physical stress wasn’t fight or flight; it was total freeze. I felt stuck.
So what did I do? I doubled down on silencing my racing thoughts and focused on holding on to the present moment. I practiced slow exhalations, listening to the sounds around me, and tuned into the sensation of air against my skin. I also concentrated on doing one thing at a time.
When each task was done, I quit thinking about it, erasing it from my brain so the next thing to do had my full attention.
A breath of help
Even though I hold on to the philosophy of aiming to live well with my ALS, I have off days. We all do. When it happens to you, I invite you to try a few of my options.
How about right now? Do yourself a favor and take two slow breaths, exhaling longer than you inhale. Ahh, it feels so good.
Life with ALS is a challenge, but we don’t have to face the tension alone. Let’s help each other learn to 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.
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