One of my scariest symptoms is memory loss. When it first started, my husband would look at me with fear in his eyes when I would state that I had no memory of the conversation he could clearly recall us having. It wasn’t a feeling of forgetting something; it was simply not there.
I still have these empty spots in my mind. It goes beyond the normal day-to-day forgetfulness that stress and being busy cause for many people. It is more than brain fog that many of us experience. It is profound and brings with it a sense of vulnerability. There are days where I literally can not remember my phone number and address. I have them written in the margins of my calendar in case someone asks me.
Like most dysautonomia symptoms, it comes and goes. I can go months without feeling like I’m losing my mind, and then suddenly I’m forgetting how to get somewhere while I’m driving or I can’t remember which way to turn the faucet for hot water.
I had a psychological work-up done during the last flare of this symptom. I refused an MRI, although that is always an option if I decide I want it. The evaluation showed non-organic dementia. In his professional opinion it was related to pain and depression. Honestly, I’m less depressed now than I’ve been since I got my diagnosis, but I know science shows that emotions change the brain. I don’t consider my pain to be too bad compared to many other people out there, but it is apparently enough to hinder cognitive functioning.
I remember learning as a nurse that heart attack patients fear swimming. They are afraid it will happen when they are in the water and can’t make it safely to shore. This is a less extreme version of that. I’m fearful of doing things out in town by myself for fear of not being able to function and not being able to get help or get home. I have gotten lost while walking several times, and the inability to think clearly makes the panic worse. It greatly affects my decision-making ability, so I make a succession of poor choices which furthers the problem.
The fear has faded (mostly). We try to have a sense of humor about it, but it’s tough because I love my brain. Who doesn’t love their brain? It’s full of my memories and makes me ME. So, I work at the managing the causes -
It’s important to recognize it before it hinders my decision-making.
I admit when I’m overdoing it and lie down. Perfusion to the brain is important!
I nap when I’m tired. Fatigue makes everything worse.
I do brain exercises. This was recommended by the psychologist.
I try to do things to manage my stress and depression. Exercise and laughter are big on this list.
I take pain medication when I hurt. Even if it means I’m taking extra pills.
Write it down right away. Sticky notes in every room and car. Calendar.
Medication tops with clocks. My daughter bought me these, and they’re genius.
Alarm on phone for midday pills. Mine is actually on my Fitbit!
Plan ahead. Take a checklist for safety.
Don’t overheat. I have a cooling towel I use. I take my shoes off a lot, and I wear layers.
Tell someone where you are going and when you should be back.