While at one of my first ALS clinic visits as a newly
diagnosed ALS patient, I received a packet filled with various brochures
and helpful information. Attached to one of the pamphlets 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 at the time I didn’t fully understand
what the card meant, I decided to keep it and tucked it into my daily journal.
Being new to the “world of ALS,” I thought taking care of myself, or self-care meant the same thing as being self-indulgent. It meant giving myself a treat or reward for, say, surviving a hard week at work or reaching a milestone in life. My indulgences often 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.
My new normal
Fast-forward through twelve years of living with ALS and 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.
Everybody needs self-care, but those of us with ALS have to approach self-care a little differently. For most folks, spending time alone, doing nothing, and performing minimal movement is a gift. But it’s not for people with ALS. We do that every day.
ALS is a 24/7 condition - - with no days off. This means ALS patients experience the very same feelings that lead to burnout in everyone else. Conventional thinking has it that ALS patients feel burnout from having to deal with the ongoing decline in physical function. But, according to several recent studies, it stems from a lack of socialization, self-expression, and self-value.
Let me share what's been working for me
To avoid isolation and a lack of social interaction: I’m a “go-along.” Whenever my husband needs to run an errand, I go along. When possible, I join in Zoom meetings or meet up with friends.
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. (Even though their meetings are temporarily being held on Zoom, I still show up!)
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 of due to your ALS.
2. Brainstorm with family members or your caregiver about
what you can do now, to give yourself a few 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.
Join me - - try adding more self-care into your days. Together we can learn to live well while living with ALS.
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| Dagmar Munn ALS and Wellness Blogger |
A version of this post first appeared as my column on the ALS News Today website.
Thanks for sharing this! I was diagnosed in October with ALS, and even before the diagnosis my strength & energy levels had slowly decreased. Now, with lower limb onset there are many things that just take longer (packing to move etc.) or that I just cannot do & by evening I need to rest on the sofa. I tend to get my best sleep in the morning so no early morn alarm. Look forward to your posts. Happy New Year!
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