Fatigue and Brain Fog: My Debilitating Symptoms of PBC

Living with primary biliary cholangitis comes with a lot of symptoms. But for me, the worst are fatigue and brain fog. Some days are good days, and I feel like a normal, functioning human. Other days I am reminded all too well that I live with multiple autoimmune diseases.

The worst part is that fatigue can just hit you out of nowhere and really interfere with your daily life.

Understanding the difference between being tired and having fatigue

My biggest pet peeve when talking about the fatigue I experience with other people is when they say, “I’m tired too.” My fatigue is much different from the tiredness that someone without health issues experiences.

The biggest difference is that I’m still exhausted after I rest. It doesn't improve or go away no matter how much sleep I get. I once read that a healthy person would have to stay awake for three consecutive days to experience the chronic fatigue that patients with autoimmunity feel.

When I think about that, it’s amazing to me how I can even begin to function some days. But it also explains some of the brain fog, forgetfulness, and cognitive impairment I experience from PBC.

How fatigue impacts my career and daily life

Sometimes the fatigue lasts for a day, and other times it’s something I experience over the course of a few days. Before I was diagnosed with PBC, I was working the night shift as a respiratory therapist. I would spend 13 hours a night running around a 250-bed hospital, so it made sense that I was tired a lot.

At the time, I didn’t make the connection that something was wrong with me and that this wasn’t just a normal third-shift level of tiredness. Usually, I would go to sleep around 8:30 a.m. to 9 a.m. and then wake up around 4 p.m. or 5 p.m.

I remember there would be times when I would hear my alarm go off, but I couldn’t turn it off. I would be able to open my eyes, but I couldn’t move my body. It was like a magnetic force pushing my body down and making me physically unable to move. Looking back on it now, I feel so foolish for not thinking anything was wrong and thinking that it was just a normal experience for people who worked night shifts.

Navigating the clouds of brain fog

When I am having a bad symptom day, I feel like my head is in a cloud and there is an invisible force preventing me from thinking clearly. It makes me forget things that I shouldn’t forget. And it prevents me from connecting the dots in my head that should be easy to connect.

Sometimes I don’t even realize it’s happening until someone says something that makes me realize I forgot something. The first time I remember really noticing it a few years ago was when I went to check on my laundry. It should have been finished, but I hadn’t heard the buzzer.

When I looked at the washer, I realized I had put the laundry in but never turned on the washing machine. It was really embarrassing for me, especially being in my early 30s. I felt like I shouldn’t be that forgetful.

Learning the importance of pacing myself

I’ve been on my autoimmune journey for a few years now, and the most significant thing I’ve learned is how to pace myself. I have come to the conclusion that I can’t continuously be “go, go, go” without any stops.

When I do that, I end up in a flare-up that typically will last for several days. My pain level will climb, and my chronic fatigue will feel worse.

But when I pace myself and do not overdo it, I am able to manage my symptoms. It might take me longer to get something done, but it will be done without compromising my health.