With ALS, I Take Time for Minicelebrations Every Week

Dagmar Munn avatar

by Dagmar Munn |

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My week has been full of projects, online responsibilities, physical activities, minicelebrations, and, oh yes, living with ALS. And while we ALS patients often complain that having our disease is a 24/7 challenge with no days off, I’ve found a way to give myself a mental break and enjoy a minicelebration along the way. Here’s how:

New priorities, new purpose

It’s easy to feel overwhelmed while trying to adjust to a life with ALS. I remember my old self was wanting to go, go, go, while my body said, “No way.” I had to accept a new concept of productivity that included simplifying, letting go, and prioritizing my physical needs.

Because the nature of ALS forces us to focus on our physical selves, our mental health can get pushed to the side. Being in a constant state of alert and looking for changes in symptoms was, for me, mentally exhausting. Slowly, I gave myself permission to move my attention from always thinking about ALS to spending quality time on projects that gave me a sense of purpose.

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My personal strategy

But how I do my projects is the key to my mental health:

  • I set flexible goals. I allow for interruptions or days when I can only manage a few taps on the computer.
  • I create a state of flow. When I’m working on a project with total enjoyment and I don’t even notice time passing, that’s flow. Being in that state gives my brain a break from having to think about my ALS. I’m immersed, relaxed, and feeling creative.
  • At the end of the day, no matter how much of the project I’ve been able to finish, I congratulate myself on putting in the effort.
  • When I finish something — maybe it’s turning in this weekly column, adding graphics to the website I manage, or even knitting myself a new scarf — I celebrate.

Celebrating for me is taking the time, even just a few minutes, to acknowledge completion and bring closure to the time, energy, and emotion I poured into the project. Often, I simply push back in my chair while taking a deep breath and think, “Ta-da!” OK, maybe I imagine confetti falling all around me, too. My mental celebrations are vital to my self-care.

The point here is that knowing that my life has meaning and purpose helps me cope with the physical limitations of ALS.

Mental Health Awareness Month reminds us to remain vigilant about not only protecting our physical health but also paying attention to our mental health. It’s one of those things that is so easy to do that it’s also easy not to do.

Let’s help ourselves learn to live well 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.

Comments

pam glover avatar

pam glover

I no longer have fine motor coordination so can’t sew, play violin. I’ve lost my desire to write my blog b/c I dont know who I am as a be-er rather than do-er. on the whole My goals are just life admin. When I did manage to get 5
lettuce plants in a pot I was disappointed because I thought I could get 12 in. Please tell me I’ll get this transition figured out so I feel like I have something o celebrate.

Reply
Dagmar Munn avatar

Dagmar Munn

Pam, thank you for sharing your feelings... ALS does force us to change, in many, many ways. I can relate to your frustration in feeling limited from doing "normal" things. I've found that accepting that things have changed...and reframing my expectations, has helped me transition. Perhaps some ofmy posts about this from my personal blog ALS and Wellness Blog will be of help.

I suggest this one: https://alsandwellness.blogspot.com/2021/10/how-to-reset-your-als-mindset.html
or this one https://alsandwellness.blogspot.com/2022/01/learning-how-to-pivot-when-living-with.html
and there are more...

Best wishes, Dagmar

pamela J glover avatar

pamela J glover

Excellent blogs, Dagmar. I think I’m expecting too much too soon. I was diagnosed just 2 months ago, but dealing with losses for two years.

Reply
Dagmar Munn avatar

Dagmar Munn

Thank you Pamela. Yes, there are many emotional phases we patients go through. First, worrying about what is wrong with our bodies (and thinking the worst), getting a diagnosis and worrying about the future, realizing we have ALS and wanting to go back to the way things were, and then the ongoing adjustment to daily changes and challenges. We patients can be of help to each other - - I encourage you to join the ALS News Today Forum, sign-up for my blog posts and join your local ALS support group. Knowledge is power.

ROY W LARSEN avatar

ROY W LARSEN

Thank you Dagmar for your positivity!

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