Cerebral palsy makes me much more fatigued than most people. Walking and moving around leads to fatigue rather quickly. Routine tasks take longer for me to accomplish. It takes so much energy to function every day with CP. Fatigue was the biggest reason I finally decided to receive a power wheelchair when I was 13 years old. It was tough to determine that I needed a wheelchair finally. It took me two years to decide that a power wheelchair was what I needed. I first tried a power wheelchair at the age of eleven. At the time, I didn’t realize just how helpful a chair would be.
When it comes to physical activity, I use much more energy than my nondisabled peers. According to the American Academy for Cerebral Palsy and Developmental Medicine, due to the way CP affects the way people move, people who have cerebral palsy may have to use 3 to 5 times more energy to perform the same amount of work as their peers in terms of effort, persistence, muscle control, and concentration. Even at rest, people with CP have to work hard. I have found this to be true in my own experience. Walking around the grocery store or mall feels like I’m participating in a road race. After I finish up a physical therapy session, it feels like I’ve run a marathon. I am using muscles during PT that I don’t use otherwise.
I am aware of how much energy I have left at all times, and I conserve energy whenever possible. This has been beneficial. Living life with CP is like living in a constant play. You have to plan out every little activity during the day to maximize your energy.
“Cerebral Palsy AND Post-Impairment Syndrome.” Edited by Gina Jansheski, Cerebral Palsy Guidance, Cerebral Palsy Guidance, 19 Sept. 2020, http://www.cerebralpalsyguidance.com/cerebral-palsy/associated-disorders/post-impairment-syndrome/.
Grace, I just finished reading all of your blog entries and I’m impressed with your writing skills and how you incorporate research/data with your personal experiences and feelings.
Kudos on a fine job!