With ALS, Self-care Is Vital for Well-being

As a newly diagnosed ALS patient attending an ALS clinic, I received a packet filled with various brochures and helpful information. Attached to one pamphlet I found a small card with the words, “Taking care of myself is not an act of indulgence, it is an act of self-preservation.” Even though I didn’t understand what the card meant, I tucked it into my daily journal.

At the time, I thought that taking care of myself, self-care, meant pretty much the same thing as being self-indulgent. It was giving myself a treat or reward for, say, surviving a hard week at work or reaching a milestone in life. My indulgences included having a massage, spending a couple of hours wandering the shopping mall, or even taking a personal health day to stay home and recoup my energy.

The new normal

Fast-forward eight years and now self-care has taken on an entirely new meaning for me. I now understand how self-care can indeed be an act of self-preservation.

In my new normal of living with ALS, it was easy to let former indulgences like self-care slip by. Even though ALS is a 24/7 condition and there simply are no days off, I’ve learned the value of continuing to take mini-breaks to balance my body, mind, and spirit.

However simple they may be, we still have choices. Following are a few of mine, along with ways I make sure they don’t slip away:

Build it into the day: Every morning before getting out of bed, I do a short routine consisting of a series of stretches, rolls, and twists. The movements wake me up and get me going, and I feel good knowing that no matter what the day brings, I’ve given my body the gift of healthy movement.

Set reminders and alarms: When working at the computer, my focus can get pretty intense as I write a new column or answer emails. The hours fly by and I can end up feeling drained. To make sure I give my brain and eyes a much-needed break, I use the Calm app (www.calm.com) to send me a daily reminder that it’s time to stop, breathe, and meditate for 10 minutes.

Additionally, every afternoon at 3 p.m., my tablet’s alarm function chimes that it’s time for me to push completely away from the computer, stand up, and drink a fruit smoothie!

Let family members know: I enjoy attending the monthly meetings of a local fiber arts group. This gets me out of the house and socializing, plus I get to learn new crafting skills. My husband understands how important this group is to me, so we work together to make sure our medical appointments and other activities don’t interfere with the group’s scheduled meeting dates.

What can you do to add more self-care into your life?

1. Make a list of self-care activities you used to do but have let go due to your ALS.

2. Brainstorm with family members or your caregiver about what you can do now to give yourself mini-breaks or wellness treats.

3. Plan when in your day these can occur and how you can make them happen.

4. Tomorrow, begin implementing your plan and notice how each gift of self-care helps to support and improve your well-being and outlook.

Try adding more self-care into your days. Together, we can learn to live well while living with ALS.

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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 Services, and are intended to spark discussion about issues pertaining to ALS.