One thing I’ve learned as a PNH patient is how to deal with brain fog
Having brain fog feels like the mind is on a conveyor belt that randomly stops
Because of paroxysmal nocturnal hemoglobinuria (PNH), I often have a troubling cognitive symptom called brain fog. It has gotten worse since I recently changed my medication.
Among the most prominent features of my brain fog are stuttering and forgetting or combining words. Recently, for example, I was trying to say the word “sled,” and for some reason, I kept calling it a “shed.”
At first, when this problem started happening, I’d giggle and think “silly me.” But after it occurred several times within a few days, I grew frustrated and began questioning my sanity.
Having brain fog feels like my mind is on a conveyor belt that randomly stops. Everything can be flowing smoothly, with my thoughts on track, my words in the proper context, and my pronunciation correct, and then suddenly, the conveyor belt comes to a halt. That causes everything to topple over, leaving me speechless until I can pick things back up and put them in the right place. Then the conveyor belt continues as if nothing had happened, leaving me discombobulated.
At the beginning of my PNH journey several years ago, brain fog manifested in the form of forgetfulness. I’d make simple mistakes at work, and when questioned by bosses, I wouldn’t have an answer other than “I don’t know what I was thinking. Sorry.” Working with brain fog leaves me uneasy because I take my work seriously. I take pride in having a detail-oriented work ethic. But when brain fog causes me to make mistakes, I start to doubt myself.
It’s hard not to be disappointed in myself when I have these brain fog moments. Sadly, my first instinct is to think about how I am perceived by others. When I make mistakes, I come across as a forgetful person. When I stutter, I appear incompetent. I must continuously remind myself that I’m not forgetful, unreliable, stupid, or incompetent because of my brain fog.
I fight back by dividing it into two categories: forgetfulness and speaking.
Forgetfulness
I try to set up checks and balances to avoid making mistakes or forgetting important things. I write down everything I might forget. I keep a small notebook handy so I can quickly jot down anything important.
I also have a planner and calendar to keep track of dates and appointments. I use a reminder app on my phone as an extra step in case I forget to check my notebook or calendar. I even keep Post-it notes handy to place on doorknobs or light switches so that I won’t miss them.
By taking these extra steps, I’ve found ways to avoid forgetfulness due to brain fog. Now I just have to fight procrastination and actually follow through on the reminders, but I can’t blame brain fog for that!
Speaking
Making a conscious effort to speak more slowly and take the time to fully articulate my words has helped suppress word confusion. I learned this in a college speech class a few years ago as advice for public speaking. I started using it as a tactic to fight brain fog instead. While it doesn’t eliminate my speech issues completely, it does keep my mind’s conveyor belt from halting as much as it did before.
While brain fog can affect my self-esteem and self-confidence, I find solace in remembering that it isn’t the entirety of who I am. I like to give myself a pat on the back when I overcome it.
Do you experience brain fog? What actions do you take to either mitigate or manage it? Please share in the comments below.Â
Note: PNH News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of PNH News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to paroxysmal nocturnal hemoglobinuria.
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