My Brain Is Back!

It's not just my muscle strength, stamina and energy that have returned to me. I can also feel my mind becoming sharper each day. This is very exciting to me because it means I can go back to work at some point. I gave up a career that I loved when I could no longer focus or retain what was being said to me. My short term memory and recall were both terribly impacted by my mitochondrial disease. Both are vital to my work.

I also had physical coordination issues that made working on the computer for any prolonged period a serious challenge. Then there was the fatigue. Sorry, that makes it not sound so bad. I mean FATIGUE! The worst of the lot. Actually they all suck. There is no winner here, just me losing all my faculties.

I could tell when I was recently able to play games again that I was starting to recover. Then when I was able to win a few... well... I can't even express how thrilling that was. And not just because I'm competitive. It meant that my brain was getting back online.

Now that I reflect I'm astonished at how well my body ran during that time when I was so terribly ill. How my brain and body worked at all? I think it was just sheer stubbornness and will on my part. Of course I wouldn't feel up to playing games. I could barely function.

The longer I'm at the gym the kinder I feel towards my body and the miracle that is me. I've been through so much physically and mentally. No wonder COVID had a minimal impact on me mentally. I was already in my own hellish war. Now I'm working my way back to health. Trying to shake damaging eating patterns. Attempting to nurture myself inside and out. I feel so incredibly lucky that my brain didn't check out completely and I can feel everything coming back online.

Brain Fog

There are many symptoms that go along with my mitochondrial myopathy, but one that I find to be rarely discussed is brain fog and short term memory issues. It's one of the many reasons I can't work anymore at the job I used to do.

"The highest concentration of mitochondria are in the nervous system, brain system, and the spinal cord. For this reason, the most commonly experienced symptoms are of a low functioning brain or nervous system. This might present as brain fog, memory issues, poor concentration, mood swings, and sleep challenges."

Or even more cheerful news...

"The symptoms of mitochondrial myopathies include muscle weakness or exercise intolerance, heart failure or rhythm disturbances, dementia, movement disorders, stroke-like episodes, deafness, blindness, droopy eyelids, limited mobility of the eyes, vomiting, and seizures." (from NIH)

My migraines can also cause some memory issues, so I unfortunately get a double whammy. My memory becomes much worse as my body symptoms increase. This means if I'm battling an illness or even just having an asthma flair because of the weather, my brain becomes very "foggy." This is the perfect word because I do feel like I'm behind a fog. Like I'm a few drinks in (which is one of the reasons I don't drink alcohol).

My auditory memory is especially affected. Recall of recent things (working memory) is very challenging for me when I'm feeling this way (like right now. Thanks crappy air quality!) My family are all aware of this challenge for me and are sweet and patient. My grandmother suffers from severe dementia, so this is a very scary symptom for me.

Like all of my symptoms there seems to be very little that I can do about it. I take my supplements and push through regardless. Since it is an invisible symptom though it can be hard for me and the people who love me to remember and address. I can get quizzical looks of disbelief when I can't remember something very simple, even from my family. It's understandable. I'm young(ish) and "shouldn't be having challenges like this." But it is a part of my muscle disease and I have to remember to be kind to myself when it happens. That's something I still find challenging. 

Thank you to this girl on Instagram who talked openly about her memory problems with her Mitochondrial Disease today. It's always helpful for me to find others who have similar challenges.