Dealing with the brain-fog blues can be a struggle for us CAD patients

Here's how I cope on days that are challenging

by Mary Lott | March 11, 2024

My boys are scarfing down their Koko Krunch cereal. I hear the water running in the shower where my husband is. Soon, he and the boys will depart for their usual, fascinating day at school, where they’ll encounter new things, talk to others, and do stuff.

I am slouched at the breakfast table with the kids. It doesn’t take much energy to pour cereal into bowls, set the table, and watch them eat, yet doing so has worn me out. I still have my bathrobe tied around my waist. My hair is unkempt. We don’t make conversation at the table. It’s too early and none of us want to put in the effort.

I look down the stretch of time that is today, and fortunately, it is empty of requirements. Good thing! I have been dealing with brain fog and am having trouble focusing. I’m extremely tired just walking through the house — a result of my cold agglutinin disease (CAD).

Transfusions for anemia, clotting issues needed by most CAD patients

Days of doing and days of malaise

My good, active, and alert days are sandwiched between days of lethargy and lack of focus. Today is in the latter group. There are several courses of action I could follow to work my way through this malaise.

Cold agglutinin disease is an autoimmune hemolytic anemia. As such, many “CADdies” complain of being tired a lot. This makes sense, considering we don’t have enough red blood cells to carry oxygen throughout our bodies to enable our organs and muscles to function at full capacity. I certainly am not functioning at my best.

For instance, I have decided to write a book about our experiences here in Papua, Indonesia. I have the will to write and an outline in my head of the themes I wish to cover. I even have a file set up on Scrivener, an app I use to help organize my writing. Yet, as I put my fingers on my keyboard, I can’t seem to push out words onto my screen. My book remains unwritten.

How CAD complicates coping strategies

There are ways to deal with brain fog, though they seem geared toward healthy people. An article on Bangkok International Hospital’s website shares several treatment options, such as spending less time on the computer and phone. Although I could do this, I really don’t want to. My computer allows me to work and accomplish activities, even when I’m not feeling well.

Another potential solution is to think positively and reduce stress. However, I’ve found that the best way to reduce stress is to resolve whatever’s causing it, and there is no resolution for CAD. This stressor is a chronic reality. Even if I ignore it, it will lurk in my subconscious like a crocodile beneath the waters of Lake Sentani, waiting to snap at me when I’m unaware.

The article also recommends getting regular exercise. Because I’m anemic and have no energy, I laughingly ignore this suggestion. If I didn’t laugh, I would be bawling out my despair.

Acceptance

Today is one of the most challenging days I have had. In this case, I find solace in Ecclesiastes: “Two are better than one, … For if they fall, one will lift up his fellow.”

I am not powering through my brain fog, but lying on my bed, typing away. The sky has clouded over to match my mood. My husband will cook dinner for the boys, and I will rest.

Note: Cold Agglutinin Disease 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 Cold Agglutinin Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cold agglutinin disease.

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About the Author

Mary Lott is a southern girl from Auburn, AL, living in Sentani, Papua, Indonesia, where she and her husband have worked for almost 30 years. She has taught sixth grade to missionary kids. Now, she designs websites, gardens, SCUBA dives as often as possible, and uses a motorcycle as her primary mode of transport. Their three kids have grown, but this gap is filled by two Papuan boys from one of the island’s interior villages. Mary is a surrogate “mom” while the boys attend a private school in town. Since her diagnosis at age 63, Mary juggles life and living at her home, “Ivy Manor East.”

Dealing with the brain-fog blues can be a struggle for us CAD patients