Brain Fog and Me

I stood in an unknown place unable to understand where I was. Why was I there? Why was this place filled with too many people? The noise and all the chit-chat were making me feel very uncomfortable. I wasn’t able to process the language. I felt like I was in the midst of a swarm of bees. I was anxious, and very scared. I froze.

A girl was looking at me. I didn't know who she was, but she was holding my hand and saying something to me in an alien language. Nothing was making sense. I wanted to cry.

A few minutes later I felt a shake. It was my daughter asking me, Mom are you okay? I nodded yes. She asked again, Mom are you back? I said yes. Do you where are you and why we are here? I told her yes, we are at New Delhi International Airport for our flight for our vacation.

She gave me a tight hug with a sigh of relief and said welcome back Mom, all is okay. I am here not to worry. You just had a wave of brain fog.

NMO has layers

What just happened wasn’t the first time I experienced brain fog. Neuromyelitis optica (NMO) has multiple layers to it. Brain fog is one of them. Unlike my other symptoms that appeared out of nowhere, this one did not appear suddenly. Instead it developed over time.

I was diagnosed AQP4+ in November 2021 and the initial phase of my NMO wasn’t an easy one. I was paralyzed 95 percent from the waist down. After hours of physiotherapy, sensation was back but with painful spasms. Depression, anxiety and panic attacks were an everyday thing. I was drained and tired all the time. I was either up unable to sleep, or I overslept.

Still, I was able to function properly until one afternoon in September 2022 it happened for the first time.

Early episodes

I have been doing crochet for almost 12 years even with one eye. It is my go-to therapy.  And I have never faced any problem with my stitch count or type. But here I was, unable to count my stitches and unable to continue with my shawl. I opened YouTube and saw the video of what I had to do, but it did not make sense.

What just happened? I am a bit forgetful and that is okay. But this time around, I didn't just forget - I wasn’t able to process or make sense of things around me.

I mean how difficult is it to count a few stitches? Well, VERY.

Soon another episode happened. I went to the market with my house help and came back with nothing. She told me I simply wanted to go for a walk, whereas I had the full list of groceries in my purse. I ignored it, thinking it was mild cognitive impairment. After all, my body had gone through so much trauma. But then over time it just became worse.

Mild to severe

The episodes started increasing and moderation varied. Some days it was mild, minor forgetfulness, like being unable to remember my name or a word. Or what I was talking about in the middle of an important conversation, or why I entered a room.

And then there were severe episodes, where I felt like a zombie or an alien. The severe ones extended from a few minutes to a couple of hours, where I’d be sitting or standing and not able to figure out what’s happening around me. Unable to understand my mother tongue, process the instructions. It was like my reasoning and understanding of simple basic tasks went for a complete toss.

Getting answers

Fun fact 1: I went to my doctor scared, only to be dismissed and told it's nothing, everybody goes through this momentary memory loss. I asked if it was Alzheimer's. Again I was shut off by being told, don’t overthink. Just focus on good things and be happy. You’ll be okay (medical gaslighting again).

Brain fog is a scary affair, especially when you have a child that needs care. I couldn’t afford to forget things. It could lead to something dangerous. But Alzheimer's was ruled out and my MRI was all clean - so what was it?

The research team finally informed me of the term brain fog. They explained it is not a mental illness. It's a condition. My body was responding to trauma and stress. I also saw a pattern, on the days when I was very low or very happy - the degree of brain fog would also vary in intensity and duration. Stress, anxiety, and overcrowded places made it worse. On more "normal" days, would be momentary.

Fun fact 2: people often don’t understand NMO, so brain fog with NMO is like icing on the cake. The funniest thing I have heard is “How drunk are you?”.

How I handle brain fog

People have asked me about this illness, and I try to explain. But even that doesn’t work at times because I get brain fog while explaining brain fog - which is hilarious.

Is it embarrassing? Depends on how you take it. For me, it’s just another piece of my condition. But it can be scary and frustrating at times because you feel scatterbrained and unable to function properly.

My brain fog takeaway is to keep ‘your’ people in the loop. In my case, I have my daughter and my immediate family as allies. They know what is happening to me.

What has started working for me are reminders in my phone, and little sticky notes in a diary. When I am out one or the other person will check on me to make sure I am okay. My daughter knows how she can tackle these episodes (like the way she handled the airport, she waited for the wave to pass).

I have all my SOS numbers, just in case. I try to avoid crowded places and have buffer time in between everything I do. Don't overdo things, if your body is not feeling okay then make time for rest. But most importantly, stay safe.