Each of these words speaks to a feeling most people have felt at some point in their lives: fatigue. As a woman with CP, this is a feeling I am certainly familiar with. Within the last five years I have noticed that regardless of the amount of rest I get the night before, I have a baseline of fatigue that I cannot seem to escape. Now, as a recent university graduate, I know how to run on very little sleep, but this felt different than the average needing a cup of caffeine. When my primary physician informed me of Post Impairment Syndrome everything made sense.
The Cerebral Palsy Foundation defines Post Impairment Syndrome as “a combination of pain, fatigue, and weakness due to muscle abnormalities, bone deformities, over-use syndrome, sometimes also called repetitive motion injuries, and arthritis.” (2020) https://www.yourcpf.org/adults-with-cp/
While this syndrome is certainly not exclusive to those with Cerebral Palsy, it is important to note that per the Cerebral Palsy Foundation “individuals with CP may use up to three to five times the amount of energy that able-bodied people use when they walk and move about.” (2020) Interestingly, even while at rest, those with CP are still using energy as a result of the higher level of muscular energy and secondary symptoms, such as spasms. In a world that never stops, how does one live a productive, fulfilled life despite a factor such as PIS? Below, find three helpful suggestions to help combat the symptoms of Post Impairment Syndrome.
- Physical Therapy
Medication. First, let me say that (as always) I can only speak to my experiences and there is certainly no one correct way to manage CP. CP, like life, is influenced by many factors and no one rule applies here; though that would certainly make both circumstances easier, am I right? From the time I was born until I was about 19 years old, I did not take medication to deal with the secondary characteristics and symptoms that I developed because of Cerebral Palsy: the overwhelming spasticity, mild osteoarthritis, and chronic pain. I met with the pain management team in my home country of Bermuda, and together we came up with a plan that I was most comfortable with. This was the information I use as my baseline, and as I’ve aged and things have changed, together, my physician and I amend it. Today, I use a combination of Nonsteroidal Anti-inflammatory Drugs (NSAIDs) and vitamin supplements to ease the pain and spasticity that I experience.
Exercise. Now, I know what you’re thinking. If Post Impairment Syndrome makes you tired, how is exercise going to be beneficial? Exercise is important for everyone, regardless of their physical abilities. For adults with Cerebral Palsy, it can be especially important because, while the underlying condition cannot be cured, the surrounding vessel (my body) can be strengthened. There is a set of five exercises that I do twice daily (morning and evening) that focus largely on releasing my heel cords, strengthening my quad muscles, as well as relaxing my hamstrings so that it allows my kneecaps to sit lower in position.
Physical Therapy. The relationship I have with PT is similar to the experience of any parent telling their child to “eat their vegetables”. The child often does not have the hindsight to realize that while they may not want to, it will make them stronger in the long run. At the moment I engage in physical therapy two times a week. Together, we developed a plan which addresses the difficulties I experience, and a range of activities and exercises that help to maximize my strength, while also learning techniques that help me complete them as safely as possible. My goal is to live a productive and happy life and be able to do everything that I want to do in a manner that is safest for me to do so.
Everyone experiences fatigue. We all know what it feels like to be drained, run-down, worn-out, or just emotionally at your end. Be patient with yourself. Be forgiving of the days when you know you have a lot to do, but just want to rest. Listen to your body.
Do the best you can, every day, and know that it is enough.