Whether they find me by way of my personal blog, my writings for ALS News Today, or through the social media channels for the ALS community - - ALS patients find me! I always enjoy meeting and chatting online and learning a little bit about each person. Many are newly diagnosed ALS patients. So, besides wanting to learn as much as possible about ALS, they also tell me they are worried about their progressing symptoms, their future, and their ability to handle it all.
Often, they ask how I’ve been able to cope with my ALS for the past 12 years, and I suggest they begin by avoiding getting caught up in what I call “thought loops.”
What are thought loops?
It’s easy for anyone with a serious chronic illness, especially one such as ALS, to fall into thought loops. These include everything from imagining future worst-case scenarios, and reviewing past memories, to cycling through negative self-talk.
For example, early on one of my own thought loops was an obsession with expiration dates.
When my doctor told me I had ALS, she also mentioned that the average patient’s life expectancy was two to five years. I left her office that day with the feeling that an invisible expiration date had been stamped on my forehead. Suddenly, I fixated on comparing my so-called expiration date with objects around our home. In the bathroom, I even examined lotion bottles and medications in search of their “use-by” dates.
To my despair, I discovered a bottle of eye drops that would be around longer than me!
Certainly, this was not logical thinking, but then thought loops rarely are logical.
How do I banish thought loops?
Then I take a slow breath in and out and observe my surroundings. I listen for sounds, feel the mattress under me, and even the temperature of the air on my skin. It usually takes only a few seconds to get my mind to pay attention to the “here and now.”
In the daytime, I’ll often use the same strategy. Moving my body also works, and so does shifting to a new position or talking to another person. For those who have a family pet, this is the perfect time for play and hugs.
A change of perspective
Paying attention to the present moment, doing one thing at a time, and living one day at a time is a powerful change of perspective.
I also reframe my expectations for the day. Rather than focus on what I can’t do anymore, I look at what I can do. My positive self-talk includes: “Today I can … and to maintain it I will … I am challenged by … and my solution is …”
Join us in the forum to learn more
While I always enjoy answering individual emails from those who are on my blog email list, I also enjoy the active discussions on a variety of topics in the ALS News Today Forum. I happen to be one of the moderators for the site. Our members are patients, family members, and caregivers who share their tips and suggestions. I invite you to join us because it’s a good way to meet others on a social-safe site and I look forward to introducing you to our members.
Together we can help each other banish our ALS thought loops. Together we can learn to live well while living with ALS.
ALS and Wellness Blog
"YOU CAN THINK BETTER, which means you can tune that inner voice of yours and ultimately live better because of it."
Marc & Angel Chernoff