How weekend fatigue turned me into a homebody
I'm often altering my plans to cope with CAD's constraints
A friend of mine asked me, “You’re always staying home. Have you always been a homebody?”
I got mad. This comment was many years ago, and it still irritates. But I didn’t express my irritation to my friend. They couldn’t have known that their words were insulting to me; plus, we were going diving. I didn’t want to fight with my dive buddy, who may have had to rescue me from a shark’s jaw! I simmered down and thought about the question.
As I thought, I realized my friend was right. I didn’t go on many hikes anymore. I didn’t go camping. I avoided parties and sports gatherings.
I preferred to read books and watch old movies. Without realizing it, I had turned into a homebody. My beloved children phrased it, “Mom, you are dull, boring, and hopelessly old-fashioned.”
Even those many years ago, I began living a double life. I’d plan activities, but I’d also make alternative plans in case those original ideas didn’t work out. I knew at the time that I wouldn’t always have the energy to follow through. I later learned that cold agglutinin disease (CAD) was likely the cause.
CAD is a rare autoimmune disorder in which self-targeting antibodies attack and destroy red blood cells at low temperatures, resulting in many symptoms, especially fatigue. I’m not just tired. Frequently, when I wake up in the morning, just pushing the covers off and trudging 17 steps to the bathroom leaves me gasping for breath.
How I wish it weren’t so!
My weekend plans
This past Friday, Saturday, and Sunday, I had good examples of weekend plans — two sets of them, just in case.
On Friday evening, I intended to attend the Auburn Knights Reunion performances. The Auburn Knights Orchestra was organized in September 1930 at Alabama Polytechnic Institute, now Auburn University, as a studio band for the campus radio station WAPI. Every year the alumni get together and play for each other and those who want to listen. Many of my college classmates, and my brother, are band alumni.
Music from the 1930s is presented first, followed by the ’40s, ’50s, and ’60s. This type of music, big band swing and jazz, is what I love. I looked forward to chatting with classmates in between sets and catching up on their lives.
But no! CAD and my recent bone marrow biopsy on Wednesday reared their interfering heads. On Friday morning, I still felt a bit queasy, and the muscles in my arms and legs were quivering. Although the anesthesia should’ve worn off, I suspected it hadn’t quite left my system. I reviewed my post-op care sheet. I decided that since no one else could see my shaking and since I didn’t have a temperature above 99 F, I wouldn’t call the doctor’s office. I’d wait and see.
I waited at home Friday night. The concert proceeded without me. I didn’t feel I needed any medical attention; I just wasn’t up to being out.
I was hoping Saturday would be different. When I woke that morning, the golden haze of dreams slowly receded as I put off getting out of bed until I had to. I felt wonderful! Maybe I could make the Knights concert that night for the remainder of the bands for music from the ’70s through today.
But I ended up staying home again. Perhaps I had enough energy to pull myself together and attend the concert. But I didn’t think I had enough energy yet to get ready for the concert, sit through the presentation, and be sociable during the set changes. Even typing these words tires me out!
My plans for this coming week
It remained so on Sunday as well. I woke up early, in plenty of time to get ready for church. But getting ready absorbed all my reserves. I stayed home. I’ve been home all day. Perhaps tomorrow I’ll go register my new car at the tax assessor’s office and later visit with my father. Or maybe I’ll follow my plan B and stay home.
That’s the reality everyone faces, not just those with CAD. Ancient texts advise that “The mind of man plans his way, But the Lord directs his steps.” It’ll be nice when those plans mean I can be active again.
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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