The Reality of FAtigue
One of the major symptoms of Friedreich's Ataxia that I wanted to write about today is fatigue. Or as my fellow FAers refer to it: FAtigue. Fatigue is quite literally the most annoying symptom of FA. It has the power to impact my physical abilities, mental health, and pain level.
As a general statement, if energy were a liquid, an able-bodied human has 2 gallons of energy a day. Someone with FA has 2 cups a day. Now, obviously this can vary some, but you get the idea. My body starts the day with way less energy than everyone else, so I tire out quickly. Fatigue is the reason that I don't love to go out and stay up late, because it truly affects me more than the average person the next day. Sure, I'll stay up til 2am, but I can promise you that I won't get out of bed the next day.
And I'm sure you're thinking, "Kate, everyone is tired the next day if they stay up late." No, my friends. Not me. You see, FAtigue is an all-encompassing and literally has the ability to confine me to my bed, unable to do anything. If I want to be a functioning member of society the next day, I have to get 9 whole hours of sleep. And I'll still be tired the next day. That's the bare minimum. But I also don't always sleep well because of pain. It's an endless cycle of my body battling itself. But that's a rant for a different day.
Fatigue affects my body in extreme ways. My physical abilities are obviously impacted. When I am really tired, that's when I fall in the shower or struggle to get dressed. I wonder how much FA would truly affect me if it wasn't for the fatigue symptom. Obviously, the reversal would not be that drastic, but it would definitely make my physical performance a lot more predictable. I wouldn't struggle as much to do things that I did the day before.
Fatigue also puts a toll on my mental abilities. THIS DOES NOT MEAN THAT MY COGNITIVE ABILITY IS IMPACTED, but it does mean that when I am tired, my body has to devote all of the energy that it has left to be able to function physically. Less energy gets devoted to making sure I am paying attention to a conversation or remembering directions a professor told me. This is why I shut down towards the end of the day. I see texts come in past 8pm and I don't have the energy it takes to even think about a response. I prefer to go to lunch or coffee with friends rather than dinner or going out at night because it is really hard for me to keep up when I have already lived a full day. I hate having to cancel or change plans because I feel like it can make me sound lazy. But I promise you, FAtigue is out of my control and sometimes my body just needs to shut down.
FAtigue is one of those things that is hard to grasp unless you experience it. I hope this made it a little bit easier to understand if you don‘t experience chronic fatigue personally. I could probably write an entire other post about it, but I’ll stop here for today. So many people with rare diseases and disabilities struggle with fatigue, so it is definitely something we need to be aware of to become a more inclusive society.