The Frustrating Reality of Living with Brain Fog
Introduction
Today, I decided to write about what it’s like to live with brain fog. Brain fog is described as a state of confusion, forgetfulness, and inability to think clearly. It’s not a condition, but an extremely common symptom of many chronic illnesses, such as POTS and Chronic Fatigue Syndrome. Before I start, though, I need to say a few things. I am writing this post while experiencing severe brain fog. I don’t plan on editing it too much because I want it to be an accurate example. Next, people who have brain fog know that it’s a little bit different for everyone. It can be a result of physical or mental exertion or just exhaustion.
I, personally, can experience brain fog after doing all of the above. In addition to experiencing brain fog on a regular basis, I have ADD and a few other things that share symptoms. To be honest, when I first started experiencing brain fog and going catatonic more often, I thought I was just really depressed. It took me over a year to realize that the way I felt depression and brain fog, chronic fatigue, and catatonia were two different kinds of exhaustion.
- Depression: for me, this kind of exhaustion is numbing. I have no interest in doing anything, nor do I usually want to talk to anyone. I just want to sulk around and wait for it to pass.
- Chronic Fatigue, Brain Fog, & Catatonia: I mentally want to move, think, speak, and live my life with all of my being, but for some reason my head hurts, it feels physically heavier, and my thoughts are moving at the speed of snails. It literally feels like trying to concentrate during the SAT except you forgot your name, where you are, who you’re with, what you’re doing, and all of the other things that are necessary to know to stay safe. It feels like your thoughts are jumbled or swimming through a really thick gelatin pool. If I become catatonic, then this means on top of my brain not working. my body becomes frozen. My limbs are heavy. One time I didn’t blink for half an hour before realizing I should do that.
The Reason for My Brain Fog Today
Let’s see. I’ve been up since 2 AM, left my COVID bunker, had my first physical therapy appointment, did two hours of math homework on camera (each problem taking at least 15 minutes, just for algebra because of the brain fog), and am now writing this post. You may be thinking, Kiki, if your brain fog is so bad, why are you doing all of this? The frustrating thing for me and many other spoonies is that this is everyday. If I actually want to get anything done I have to fight feeling like my body is being repeatedly run over by a train and only my mangled brain is left for me to live off of. People think I’m being forgetful or just “getting distracted” but my brain is always going for the slow burn. It’ll remember the real word for “unexpectedful” in a few minutes, thank you very much (that is actually something I said today).
The Other Parts of Chronic Fatigue & Brain Fog
Not only does brain fog, in particular, affect everything I personally do. It also has a HUGE impact on my ability to understand people. I’ll have to ask people to say a phrase three or more times. If I’m with a group of people, I try to have at least one person with me who knows so they can walk me back to my bed and honestly say when I’m not making sense. Depending on how bad it is that day, I could very easily fall over, injure myself, and not realize it until there’s a puddle of blood. That would be very bad (I guess I do have a morbid sense of humor but it’s funny cause it’s true…I don’t even know). I don’t know why, but I tend to rely a lot more on reading lips and subtitles. Something about hearing words and processing them takes more energy.
One more thing that I just realized I was doing right now is that brain fog can make you forget a lot of basic needs. I, finally, connected the dots as I’m writing these words that my stomach hurts because I haven’t eaten dinner. For some reason, things like eating, drinking, peeing, breathing, blinking etc. are the very first things many of us forget to do when we experience brain fog or go catatonic. This ends up only making everything a million times worse. So, here’s your reminder to eat if you need to.
A Spoonie Secret
If you experience brain fog, chronic fatigue, or catatonia, this tip is for you. Chronic fatigue is one of the symptoms I’ve been dealing with the longest. The first thing I started doing to cope was to allow myself to rest more often and listen to things instead of watching or reading them. For example, I started “watching” TV shows with audio description when my brain was functioning fine and I just couldn’t physically keep my eyes open.
Before this, I also hated audiobooks with a vengeance. Once chronic fatigue started happening, reading became more exhausting. However, reading is my first love. So, I continued reading great books by listening to them whenever I experience any of the above. For the brain fog, audiobooks are a lot easier to understand than people in fast-paced tv shows or conversations. It can be at whatever speed you need to listen to to be able to process. When my brain fog is really bad, though, sometimes the only thing to do is lay down and try to sleep for a bit. I hope that helps any of you, spoonies out there managing chronic fatigue. If you have experience brain fog, too, let me know what you do that makes a big difference in your quality of life!
Conclusion
To sum it all up, brain fog isn’t fun. I’m not faking it. It is a perfectly valid, medical reason for not being able to function, even though other people love to discredit it. While this is one of those things that is very difficult to understand if you’ve never experienced it, I still want to ask one thing of you. If you say a young woman sitting in the disabled seat on the bus, don’t give her the stink eye or call her a “cranky lady” (yes, I am quoting someone). There are so many reasons she could be sitting there. She doesn’t need to look disabled to do so. For all you know, she’s trying not to pass out or working hard to remember which stop to get off at as soon as she sees the sign and not five stops after.
