Dealing with chronic fatigue has me going round and round in my mind
Forcing myself to try to do things can have lasting consequences
“Round like a circle in a spiral, like a wheel within a wheel/ Never ending or beginning on an ever-spinning reel/… In the windmills of your mind.”
When I try to figure out cold agglutinin disease (CAD), my mind goes round and round and never quite settles on one positive conviction. The song “The Windmills of Your Mind,” originally recorded by the English actor Noel Harrison, aptly describes how my circular thinking takes over when I try to figure out the puzzle of this disease.
I’m finally feeling better after two months of weakness to the point that I could barely drag myself out of bed. I can now move around my house and even venture out on short excursions. The question I’m trying to answer now is whether I should start exercising again. With CAD, there are benefits to exercising, but there are also penalties.
CAD has many variables. The primary complaint by us patients is fatigue. Additionally, there are heart problems, breathing problems, urinary tract infections, brain fog, and muscle pain. Every day I go round and round in my mind trying to decide whether my current malady is caused by CAD or something else. I think, “Should I treat this symptom with medicine and rest or try to power through it?”
Fortunately, we “CADdies,” as those of us with CAD sometimes call ourselves, have resources to find answers for our many questions. The Cold Agglutinin Disease Foundation offers webinars throughout the year to share the latest research and information. I recently listened to a Q&A session with Roy Smith, a hematologist at the University of Pittsburgh Medical Center. Early in his presentation, I learned some insights into this ever-challenging disease.
One of the topics he discussed was fatigue. I’ve always been a fan of the Sunday afternoon nap. Now, however, I’m a fan of the everyday nap. It doesn’t help, though, because fatigue is an ever-present companion that’s difficult to explain.
Is it fatigue or tiredness?
During his discussion, Smith compared fatigue with tiredness: “Fatigue is basically where you have this feeling of complete muscle weakness and inability to get out of bed and function normally. Tiredness is where you have the feeling that you just can’t get any sleep. … So they’re really totally different things, and I think people confuse them.”
Last week, I woke up feeling well rested so I planned how much I could accomplish. I jumped on my motorcycle and powered down the hill to the main road. My destination was on the far side of town, about five miles away, and that part went well. I entered the store, bought what I needed, and hopped back on my motorcycle to return home.
During the return trip, however, fatigue set in, first in my arms and thighs. Then I was hit by a feeling of profound weakness. It was as if every muscle in my body was turning into sludge and being pulled through my skin.
When I got home, I debated whether to stick to my schedule or adjust it because of the weakness. But I get extremely frustrated by my inability to complete tasks without giving in to rest. I always want to continue working until a project is finished.
Smith described what I experience, saying that many CADdies undergo a bit of personality change because of the frustration. “They just can’t seem to get any relief or find someone that understands what they’re going through.” I believe my personality has indeed changed. I find I’m more impatient with people who want to encourage me by saying things like, “You need to at least try [a particular activity].”
I must be firm in my resolution. I don’t try things because I won’t know if it’s a bad idea until after the activity is over and the damage is done. If I’d known, for example, that a 30-second walk from a plane to an airport terminal would land me in bed for six weeks, I would’ve planned my flight differently. Trying is sometimes damaging, something I’ve learned the hard way.
Nonetheless, I’ll persist. Later this week, I plan on attending a series of group meetings. If all goes well, next week, I’ll try swimming again. Otherwise, I’ll remain in bed recovering.
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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Rita Whitehead
I enjoyed your pointing out the difference between tiredness & fatigue. Even though my HBG is at 13 I still suffer from breathlessness. I can only exercise for 10 minutes at a time. My Hematologist doesn’t think it’s to CAD. And the pulmonologist has cleared me of any issues. Wondering if you have any insight.