My roommate walks through the living room and asks me if I want to join her and some friends for happy hour, however, I give no response. My eyes acknowledge her, but in her words “seem glazed over” and I sit there, speechless. Inside that head of mine, my thoughts are a jumble; I can’t quite understand what she’s getting at. Words are floating around in a mist, some of them hers, some of them mine, and part of me is trying to grab on to them, any of them, to respond. It’s not simply a matter of finding the right word (though that happens often enough); I’m having trouble stringing cohesive thoughts together. I’m not only unsure how to respond, but I’m also not even 100% sure what she is asking. I finally utter something unintelligible before grabbing her arm and getting out “rough”. Knowing me, she takes it to mean that I’m having a rough moment and gives me time. Moments like this are extremely common for me, lasting between a few minutes to the better part of a day. This type of cognitive dysfunction is not only disruptive to my life, but incredibly frightening.
More than losing a career
As I’ve said before, these types of issues have had a profound impact on my life and played a huge role in my having to leave my career. While the embarrassment of having to respond to “So, what do you do?” type questions is bad enough, living with these types of thinking problems every day is extremely difficult for me. Did I take my medication? Have I seen this before? Why am I here? What are these people saying? Did I eat dinner? How do I work the microwave? What is this? Every single part of my life has the chance to be completely interrupted at a moment’s notice. It’s had a pretty adverse effect on my independence as well. Navigating life has become an unpredictable challenge, made even more complicated by the fact that most folks who see me, have no idea what’s happening because it’s not visible. I look fine on the outside but may start acting weirdly, speaking gibberish, or not responding at all. If you don’t know about my issues, I might seem either drunk or rude. Most of the time, there isn’t much I can do. If it lasts a few minutes, I can try to go about my business as usual, but if it lasts longer, I simply have to lay down and close my eyes. I can’t even watch TV because I can’t follow what’s going on when I am like this.
Cognitive dysfunction is terrifying
On a daily basis, sure, it’s awful because of the way it affects my life, has deprived me of my career, and puts me in potentially dangerous situations. Another aspect people don’t think about with regards to cognitive dysfunction (or brain fog as some call it), is that it’s extremely scary, to me anyway. When you forget so much, when you get confused so often, it takes its toll. When you sit there, unable to recognize what someone is saying and your brain is a jumble, it’s just awful. Sometimes, yes, I know what’s happening and that it will pass, But there are other times when I have no idea what’s going on, I’m not thinking well enough to understand. I can’t even convey with words how scared I am when this occurs.
I don’t always know when my thinking is compromised
There are times when I realize I was impaired after the fact, meaning I wasn’t thinking right and went about what I was doing, to only later realize that my thinking was compromised. I’ve made errors, purchased items, taken more medication than I should have (conversely, I’ve been SO sure I’ve already taken my medication that I won’t take it when I should, so sure of it, that even when it’s in a date labeled container and I see it still in there, I actually start to reason that it still being there is somehow a mistake, someone else's mistake, not that I misremembered.) That’s how convincing this can be. I’ve showered more than once on occasion and done all number of things (with varying levels of danger) without realizing what I was doing until after the fact. This has happened so often, that I sometimes feel like I can’t trust myself. Do you know what it’s like to not be able to trust your own thoughts? To not trust yourself? It’s horrible.
Adaptating to these thinking problems
At this point in my life with Multiple Sclerosis, having these thinking issues is something that I have to live with. It’s not the easiest, but like most things, you adapt. I do my best to educate the people close to me, so they understand and can recognize what’s happening. I constantly try to do brain puzzles and even work with LEGO as a form of rehab. I also rely on routines and familiar places. Oh, and notes - many, many notes. From simple reminders written in sharpie on my arm, to setting up notifications on my phone, to checklists (man, checklists are so important to me). So not all is lost with these issues, but it does take some effort. I’ll probably never be a software engineer again (honestly, I’d settle for being able to read a book without rereading most of it several times), but I still survive and make a life for myself.
Do you suffer from brain fog or other cognitive issues? Hit up the comments below, let’s discuss!
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