Taking time to stop and rest is crucial when living with CAD

Between my symptoms and my life stressors, my body needs a break

by Mary Lott | February 10, 2025

I’m finding myself weary at the start of every day. Sleep doesn’t provide much calming rest, and I need time to focus myself before I begin any work. That’s frustrating! I want to “get cracking,” but the flesh doesn’t match my spirit.

Then I came across a quote online (source unknown) that seemed to explain things: “You’re not lazy. You only have a certain amount of energy. Right now, you are using yours just to survive.” It gave me a new perspective on my slow starts in the mornings.

I have cold agglutinin disease (CAD), a chronic, autoimmune type of hemolytic anemia. When my red blood cells are exposed to cold air, they clump together and are destroyed by antibodies, resulting in less oxygen being carried to my muscles. Without enough oxygen powering those muscles, I have no energy to get out of bed.

Rituximab treatment effective in combined CAD, autoimmune disease

Working from bed

During January, I could indulge in working from bed. It wasn’t that I wasn’t busy. My husband and I have reached the age where we need to plan for our retirement, and the quantity of confusing forms we have to fill out would be enough to choke a goat. It was a bit overwhelming, even though I tried to deal with the papers in the morning when I was “fresh and awake.”

My father, also, has reached a ripe, old age. It’s become apparent that he needs someone to help him around the house, to make sure his laundry is done, and to pick him up if he falls, but he’s able to make his own decisions concerning his needs. I had to plan some arrangements and wait to set things in motion. That took a lot of time and patience and caused a lot of stress.

Stress isn’t good for “CADdies,” as we with CAD call ourselves. We’re always in a traumatic state, which only exacerbates our traumatic response to any kind of life stressors. This response may include overwhelming fatigue — a CADdie’s constant companion — as well as trembling and muscle weakness. No wonder I didn’t get out of bed in the mornings!

Causes of my traumatic response

Things came to a head in the middle of the month. I was in Alabama and needed to get back to Papua, Indonesia, where my husband, boys, and Pokey, my dog, are. But I wasn’t at all comfortable leaving my dad without care. I was determined to have a serious discussion with him after church one Sunday.

I was surprised when I walked into his house. He admitted he needed a home healthcare worker and asked me to call one. He agreed that he needed someone to overlook his banking affairs and to apply on his behalf to the U.S. Department of Veterans Affairs for assistance. I was able to make immediate progress in all aspects, so I booked my plane tickets for early February. But even so, I had a traumatic response to the stress of it all.

The next day, I was overwhelmingly tired. I had nothing pressing on my calendar to go out and do, so I did nothing. Well, that isn’t quite true; I recovered. I needed the extra rest time for my body to catch up and deal with the trauma I was experiencing.

I, in essence, stayed in bed through Wednesday evening. Was this process all caused by my CAD? No, I don’t think so, but it’s likely that my condition heightened my response. If I didn’t have to deal with the disease’s muscle and joint aches, brain fog, and fatigue, as well as battle to stay warm in January, I wouldn’t have stayed in bed. All the same, I did remain under my covers and gave myself time to rest.

Next week

I’m writing this column while seated on a plane somewhere over the Pacific Ocean between Vancouver, Canada, and Singapore. I’ve built into my itinerary a day’s rest in the latter. Then it’s on to home — at least, one of my homes.

I plan to spend the next week puttering outside, enjoying my tiny pool, petting my dog, and building up the stores of vitamin D in my body. I plan on doing nothing. I’m not lazy; I’m just using all my energy to survive.

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.”

Taking time to stop and rest is crucial when living with CAD