My cerebral palsy (CP) and epilepsy can both contribute to me becoming increasingly fatigued as the day wears on. Their symptoms can overlap, which often makes it difficult to identify the cause—or explain it to somebody else. As a result, I find myself mentally working through the possible causes: physical exertion, poor sleep, stress or seizure activity.
I’ll be straight with you: CP is my primary source of fatigue on a day-to-day basis. I use around three times as much energy in a day as someone without CP. Through experience, I’ve learned that when I wake up, I have windows throughout the day when I am at my relative peak. I have learned to utilise these windows whenever and wherever possible.
When it comes to chores, I try to save the major household tasks for when I have the most energy. In my personal life, if I have plans with friends or family later that day or over the weekend, I need to conserve energy so I can enjoy what I’m doing rather than going out already running on empty. If you know me well, you’ll know I still do that far more than I should. I’ll circle back to this, as the way my epilepsy is linked to fatigue is slightly different.
The situation that requires me to make the most sacrifices or compromises, however, is work. I of course have reasonable adjustments in place, but if I have had a particularly taxing shift, I know I have to hold off crashing until I get home. My CP is the result of a brain injury, so my ability to process large quantities of information is occasionally limited. I know I am going to be exhausted after the shift and need to give myself ample time to decompress and unwind before I even think about attempting anything major once I get home. I am happy to work under pressure and pride myself on my time management; I have simply had to learn to cope with it differently, in a way that suits me.
As I’ve touched on previously, I’ve worked combinations of shift patterns and what is as close to a 9-to-5 day as sport allows. A few years ago, I had a seizure while working an early shift and, looking back, I had done a run of three in a row. It was a 5am start, which meant going to bed at 9pm and setting my alarm for 4am. I became accustomed to it after a while, but I am in no doubt that the shift pattern increased my fatigue. The disrupted sleep also increased my risk of seizure activity and, on that occasion, I unfortunately had one. I was working on live television output, so I had to remain fully focused. That demand, coupled with the interrupted sleep pattern, led to me falling asleep in the middle of the day after I got home.
I’ve had to learn to listen to my body and recognise the signs that I may need more rest and recovery time if I have overexerted myself. When somebody looks at me or interacts with me throughout the day, they may notice a physical change: I might not perform a task at the same speed as I did a few hours earlier. That matters, but it is my epilepsy that requires closer monitoring. I can physically recover from a busy shift with rest; however, being fatigued, particularly when I am stressed or unwell, significantly increases my risk of seizure activity. It is during those times that I have to monitor myself more closely.
When it comes to epilepsy-related fatigue, if I am out with friends or family, I have to take my medication with me when I am due to take it while I am out. I don’t necessarily tell people I am doing this, but I monitor how I am feeling throughout the night and recognise when I need to stop pushing through, call it a night and go home. Even then, I know that what feels like a brilliant day or night can carry a cost afterwards.
Living with two conditions that have overlapping symptoms poses its challenges. I know I can sometimes power through CP fatigue—although that is not always my wisest decision—but epilepsy-related fatigue is something I have to take more seriously rather than simply brushing it aside. I will not always be able to identify the exact cause, so I respond according to the potential risk. Sometimes resting is about recovery; at other times, it is about preventing something more serious.
