Our bodies naturally move so usually we don’t think about it at all. Tasks like standing in line or walking around a store are so easy for most people that they do not realize that these activities require muscles, joints, and brain signals to be activated simultaneously to keep the body balanced, supported, and moving smoothly.
For people with cerebral palsy, this physical effort can literally exhaust them. For me, while my legs work hard to support my body’s alignment, my torso struggles not to move, and my hips and ankles keep making very small adjustments to maintain balance. Besides the physical impact, fatigue impacts people mentally and emotionally. Your brain has to work overtime and your mind is in a heightened state of alert ready to anticipate a fall or to withstand stress.
Fatigue increases throughout the day, limiting mobility, affecting mood, and limiting socialization. In the morning, I typically have more energy. For me, a simple walk through a grocery store or mall is like running a marathon. Using rarely engaged muscles leaves me utterly exhausted.
This ongoing fatigue is so normal that it is invisible to others. As I got older, it eventually wore me down. Fatigue was the main reason I chose to receive a power wheelchair at 13. Although tough, this decision allowed me to save my energy for moments that truly mattered.
Deciding to get a power wheelchair did not represent defeat to me. It was about finally coming to terms with the fact that my body has limitations. It was understanding that I finally had the energy and freedom to be more involved in daily life.
Fatigue remains an ever-present companion, but it no longer governs every decision I make. The world does not become more accessible when disabled people force themselves beyond their limits, it is when society realizes the invisible effort that we put in to navigate spaces that have not been designed with us in mind.
Source:
Puce, Lucrezia, et al. “Systematic Review of Fatigue in Individuals With Cerebral Palsy.” Frontiers in Human Neuroscience, vol. 15, 2021, Article 598800, https://doi.org/10.3389/fnhum.2021.598800