To garden or not to garden: Pondering the imponderables

It was a rare Saturday morning with nothing on the schedule, so my husband, Mike, and I could sleep in. Except that I’ve forgotten — temporarily, I hope — how to sleep late. I awoke close to the usual time.

Since it wasn’t raining, I thought I’d get some light gardening done. With the fast growth of the jungle, it’s always a battle over who will win — me or the weeds. Lately, I haven’t had enough energy to engage in this work, so the jungle was winning. “Today, most definitely, that is going to change,” I declared.

Fighting the jungle

Since February, I’ve been experiencing chronic fatigue due to my cold agglutinin disease (CAD). As time has passed, I’ve added more and more activities to my routine. Last week, I attended Bible study held by our expatriate group here in Papua, Indonesia, instead of skipping it. So, Saturday morning, with my husband at home to help if got into trouble, I decided to be more adventurous. I was determined to do some gardening.

Accomplishing anything physical is a challenge for those of us with CAD. It causes ongoing hemolysis, or the destruction of red blood cells, resulting in chronic anemia. One minute, I feel like I can take on the world, and the next it’s “Please don’t make me move as I’ve just become a bucket of molasses.” Yet, I’ve been worried that I’ve become too sedentary and thought that perhaps it was contributing to my exhaustion.

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The times, they are a-changin’ in the world of CAD

A recent talk by University of Pittsburgh hematologist Roy Smith mentioned intermittent pain that can appear particularly in the muscles after exercise. “In order for a human being or any animal to function normally, you have to get enough oxygen to your tissues,” Smith said. “And in order to get enough oxygen to your tissues, you have to have enough hemoglobin, which means you have to have enough red [blood] cells.” He illustrated this with a personal anecdote.

Smith told of his experience from a major pulmonary embolism that made him ill for a long period of time. He became like me! He would do his necessary work, but the remainder of the time, he would just rest his body. Smith explained that this lack of physical activity leads to an “imperfection in the metabolism in muscle cells, which does not allow it to extract oxygen normally from hemoglobin.”

He resolved this by going into physical therapy, and his symptoms resolved in approximately three weeks. With Smith as my inspiration, I set off to clean up my yard.

The jungle fought back

Oh, my goodness! Although the work wasn’t strenuous, I was in quite a bit of pain. The muscles in my calves would sporadically and repeatedly clench. I don’t know why. Basically, I was using a weed whacker to resolve the overgrowth of the zoysia grass around my bougainvillea. When one small area was done, I’d take a step or two to the left and have another go at it. This took a while.

After 45 minutes, my legs were on fire. I took a break and sat down for an hour. I had to catch my breath because the band in my chest was getting tighter (a symptom of CAD), and the elephant sitting on it gained another 50 pounds. I want to reassure my readers these chest symptoms have been occurring like this for decades. I’ve been checked, and heart difficulties have been decisively eliminated.

All morning, I was on-again, off-again until I felt that I had pushed my body as far as it would go. The muscle aches were tremendous. I took a prescribed muscle relaxer and spent the rest of the day recovering. Smith mentioned in his talk that people with CAD often panic over the disease. Pain and breathlessness are experienced, and frustration sets in.

In deciding to do the gardening on Saturday, I also planned to recover from the work through Sunday. I followed my plan. I found that on Monday, I was able to move around freely again, so I attempted more physical activities. It will take a while to reprogram my muscles to extract and utilize oxygen again. But now, I’m encouraged by Smith’s discussion, and things are definitely changing for me.

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.