How Journaling Helped Me Adjust to Living With ALS
When starting a chronic illness journal, you can keep it simple at first
A question I’m often asked by newly diagnosed ALS patients is, “What do you think is the one thing that helped you adjust so well to living with ALS?” My answer is always the same: There’s no one thing; it’s the synergy of many strategies and habits that have helped me through the years.
The obvious ones are having support from my doctor and her team at the ALS clinic, along with medication, exercise, a quality diet, and so on. Not so obvious, but equally important for me, is keeping a daily journal.
How I began
I learned I had ALS in late 2010. One of the first things I did was purchase a small, 7-by-5-inch spiral notebook and dedicate it to chronicling my ALS journey. I had never journaled before, but from my experiences teaching wellness to people with chronic conditions, I knew journaling was extremely helpful for them. Now I was the patient in need of all the help I could get.
At first, I was intimidated by all of the blank pages in front of me, and my notes were brief and to the point. For example, here’s my very first entry:
1/10/2011 — Monday
Upper body: Resistance band exercises for arms, 8 reps/1 time
Core: Chair crunches, 20 reps/2 times
Lower body: Seated leg extensions, 5 reps/1 time
Balance: Tai chi routine, 15 minutes
Comments: Energy OK, felt tired by evening. Have heavy feet and heavy hands.
About a month later, following a visit to the ALS clinic, I decided to list suggestions from my doctor and physical therapist. This led to creating a new page in the back of the notebook for questions and topics to bring up at the next visit.
My journaling improved
My daily journaling evolved into detailed descriptions of exercise routines, books I was reading, and my reflections on events of the day. I even dedicated a full page to what I labeled as “Grand Goals.” These were the skills I wanted to keep performing independently, such as getting into and out of a car, sitting on and standing from a chair, using a toilet, getting down to the floor and up again, and walking with a rollator.
Writing in my little notebook at the end of each day kept me focused on my goals and on track with daily exercises. It was a welcome therapeutic method to sort through my negative feelings about having ALS.
If you want to give journaling a try, I’ll share a few of my tips. There are many options besides having to write in a notebook. You can use an online document, or if typing is difficult, consider using a talk-to-text app.
If, like me, you are worried about how to begin, I suggest you fill the first page with a collection of positive quotes. Then create lists of goals and questions for your doctor. Once your notebook has a few “used” pages, you can start adding daily thoughts guilt-free.
Remember that journaling can be a new habit for you. It needs at least three weeks to become part of your daily routine. My journaling not only was a habit, but it also evolved me. I became so comfortable writing about my ALS that I wrote a book, started a blog, and have spent the past five years writing a weekly column for ALS News Today.
Maybe writing a blog isn’t one of your goals, although I do encourage you to give it a go. Until then, consider starting a daily journal. It’s one more valuable strategy to help us learn how 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.