How napping benefits this knackered CAD patient

Looking out my window as I start to write this column, I see what appears to be a sunny day. But there’s a cloud covering the top part of the mountain, so it may not be sunny for long. My pets, Pokey and Ginger, are sound asleep. Should I get up? Or should I remain here in bed, waiting to see what the day will bring?

I linger in bed, leisurely sipping my morning drink and perusing the news on the internet. I’m such a slow starter these days, which is a drastic change for me. I used to rise in the wee small hours and be out the door before 7 a.m.

The cause of the change

What’s changed is that I have cold agglutinin disease (CAD), which causes my red blood cells (RBCs) to clump together in cold weather and, in essence, fall apart. That results in a lot of challenging botherations. Primarily, I’m fatigued. A few weeks ago, a medical event caused me to lose RBCs.

Today, I was able to go to the store and purchase five items. I did that early in the morning so I could rest in bed the remainder of the day. At noon, I washed the breakfast dishes. Two hours later, I rinsed them, and an hour later, I put them away. Welcome to my world.

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This process was a vast improvement from last week. I’m now contemplating browning hamburger and chopping veggies for tacos tonight. That’s an easy supper. Up until now, we’ve been having supper delivered from local restaurants here in Papua, Indonesia. The boys enjoy that, as they don’t like my American cooking, but my husband isn’t too thrilled with that arrangement.

Fatigue isn’t the only problem, and in my opinion, it’s not the most important one. Breathing just flat-out wears me out. I have an ache in my chest and the middle of my back. I cough frequently, not because of congestion, but for some other reason I’ve yet to discover.

Apparently, I’ve lost enough RBCs that it’s triggered shortness of breath, which is a long-standing symptom I experience when things are bad. It often prevents me from speaking above a whisper, and I develop a dry, reflexive cough that’s more pronounced when I’m tired. Napping in the middle of the day helps.

I’ve also been experiencing brain fog, an informal term that refers to feeling mentally sluggish, cloudy, or disconnected. As I consider the description “cloudy,” a resounding musical chord echoes through my head. That perfectly describes my brain function over the past month. The clouds and fog have just recently started to clear, and my thoughts have become more lucid.

Anemia can contribute to brain fog. Fewer RBCs mean less oxygen going to the brain, resulting in slower thinking, memory issues, and difficulty making decisions. Last month, I put off making any major decisions. I knew I was more “dingy” than usual.

The way I treat this

Just this morning, a concerned friend offered to bring me some blackstrap molasses, which is rich in iron and excellent for building back strength. I understood she wanted to help. I’d recovered enough to explain that CAD patients have enough iron — indeed, many times we have too much. We just don’t have the RBCs to carry that iron to where it’s needed.

What we do need is rest. We need sedentary jobs. We need to be able to space out our work around the house and do it in small chunks. Other than keeping warm, resting and pacing myself are the best things I can do to recover from a medical event where I lose RBCs. With that in mind, I’m sleeping through the night and resting during the day.

Today, March 10, we have a great excuse to grab the naps we need during the day. Yesterday, March 9, the U.S. began daylight saving time, which meant losing an hour of sleep. Therefore, we should take time to rest today. After all, it’s National Napping Day in the U.S., too.

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.