A holiday all of us with cold agglutinin disease can celebrate

I slather zinc oxide ointment all over my nose, plop on my hat, and jump in the pool. I have been given instructions to rest and get better. My friend said, “Come over whenever you want,” and I intend to take full advantage of that offer. My goals for the day: Read a book, watch the hawks circling above the tall pines, and build up my levels of vitamin D. I have my air mattress already inflated, a foam tray with my choice of drink floating next to me, and nothing scheduled for the rest of the day.

All my life I’ve been told to make the most of my time. “Use your time wisely” was an adage my father and mother told me. They didn’t know I shouldn’t be busy at every moment.

Doing too much can be dangerous for someone with chronic anemia, which I developed as a result of my cold agglutinin disease, or CAD. Downtime must be allowed. Anemia and a low red blood cell count have plagued me for at least 15 years, perhaps longer. I tire easily and have long stretched routine work over longer periods than my family. We “CADdies” must often work in spurts.

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I describe cold agglutinin disease as a noncommunicable blood disorder that kicks in when I get cold or breathe cold air. When that happens, my red blood cells clump together and then dissolve, making me feel tired.

It’s why I don’t hike the 7,000-foot mountain between my house and the beach. It’s why I’m not on any of the local amateur volleyball teams and don’t exercise at the school like others do. It’s because of my CAD that I cough when I’m breathing too hard. It isn’t contagious; many people worry when someone around them starts coughing. I don’t sing in church, and I don’t teach anymore. I just don’t have the voice or the energy any longer.

My lack of participation in group activities has caused some misunderstandings. People in this community only see that I’m not active and rest often. My husband has learned, though, that I have to take a lot of time to rest in order to participate in important activities such as traveling to a remote place for work or preparing for a formal family dinner. He helps me with that. I feel guilty, but just slightly, for relaxing while others around me engage in activity. Such is life for those of us with a hidden and rare disease.

Perfect holiday for CADdies

However, I now have a national holiday that celebrates my lack of activity: National Lazy Day, which is observed in the U.S. on Aug. 10. Perfect! I thought about investigating which activities are done in celebration. But that in itself is an activity and, therefore, self-defeating. The key is to do nothing.

(photo by Mary Lott)

I took this photo from my air mattress to remind myself how pretty the green pine trees are against the clear, blue sky. (Photo by Mary Lott)

The holiday appears to have begun in Colombia on the closing day of the Festival of Industry, Trade, and Culture. It’s a day to take a respite from frenzied activity, to indulge in the joy of lying in a hammock reading a book or sitting on the lawn at twilight watching the fireflies flit through the flowers in the garden. While it’s been over five years since I’ve participated in an activity I could call frenzied, I still plan on taking advantage of this holiday.

Many days I’ve gotten up and gone through my morning routine — fixing breakfast, brushing teeth, combing hair — only to say at the end of it, “Gosh, I’m tired,” and go back to bed. On Aug. 10, I believe I’ll do just that. My advice to all CADdies is to go ahead and celebrate National Lazy Day. In fact, celebrate it as often as needed.

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.