October’s National Kick Butt Day offers up a chance to clobber CAD
This disease knocked me off my feet in September
On Friday evening, I locked the front door and hopped on my trusty, rusty motorcycle. Finally! I was leaving the house for the first time all week. I would be skipping the meal served by our Hillcrest School seniors here in Papua, Indonesia, but I needed to interact with others after being knocked off my feet all through September.
Many with cold agglutinin disease (CAD) face this dilemma. I have no cold, no fever, and no major aches or pains anywhere, but when I try to move, I start coughing, and a band about my chest tightens. When I’m at rest, I don’t feel sick, but activity, talking, or mental challenges bring on dry coughing that can escalate to vomiting. I hate vomiting and go to great lengths to avoid it. Thus, long hours at rest, despite being healthy, are required to prevent being sick.
At the dinner-volleyball game on Friday, I described my daily schedule to a longtime friend, and she remembered the old me who taught sixth grade and then swam a kilometer before going home to take care of my own kids, who were in high school and middle school at the time. My friend is right. My previous butt-kicking self gets very discouraged.
Gearing up for some butt-kicking
As it so happens, National Kick Butt Day is coming up Oct. 13. I can’t imagine anything I’m doing now that remotely qualifies as kicking butt. On the off chance I was wrong, I checked out the All for the Memories web page, which lists butt-kicking things to do, to find out. Its ideas were nice — for people who are healthy. But there’s no way I’m going to a dance party, a walk, or cleaning anything. I pay someone to clean for me!
Still, the site’s ideas were useful as a springboard for things I can manage and that would better fit my current lifestyle.
I definitely excel at sleeping late. I’ve been up past midnight lately, offering reading remediation for a friend in the states whose daughter needs some assistance. Further, sleeping in increases my energy and alertness, improves memory, builds a better immune response, and balances my metabolism. Sleeping in is kicking butt. Helping my friend’s daughter is kicking butt, too.
I’m also spending time in the sunshine. Not only does it increase vitamin D, it also improves mitochondrial function. Mitochondria are often called the powerhouses of cells. In short, sunlight improves our ability to function. Another win.
An idea I found on All for the Memories was to read for pleasure. I’m good with that. Reading takes me to worlds and times I can never experience on my own. I’ve always kicked butt as a reader.
Today, I’m kicking butt by writing. The lesson for tonight’s lesson is already organized. And the quietness that eluded me last week during the school holiday reigns supreme.
My equilibrium is being reset! Although these activities are fairly benign (I spend a lot of time in my bed), I can tell I’m getting better. I can talk long enough to teach for about an hour. I can walk around the house without gasping for breath. Tomorrow, I may make a short trip to a nearby store.
I know I need to make allowances for CAD. I may have to accept the limitations CAD puts on me, but I can still find ways to kick CAD’s butt.
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.
About the Author
Deb Fox
I have mitochondrial disease- myopathy type. My Krebs cycle is also broken, so I dont make my own energy. I know what it's like not to be able to move under my own steam. Even tho I dont have CAD,I can SO relate to your trials. Thank you for sharing. Your positive and real postings let me know I'm not alone in this world. God bless you 🙏
Marsha Damon
i have had the pain around the chest that Mary Lott mentioned for 4-5 years. I have mentioned it to all my doctors, so I was thrilled when Mary confirmed it was real. When I read the paragraph to my husband he said, “ You have been having that pain for year’s. The coughing also is a on going problem. Also, like Mary when I’m to fatigue I just stay in bed or I have been known to sit in a chair all day. Fortunately, i am able to do most of the running of the house. I have agreed to cleaning help once a week. Because of the CAD & my age 87 & my husband 94, we couldn’t stay in our home without their help. I do most of the cooking and the laundry , but I have a husband who picks up the slack. This is how our house runs, (we are both neat nicks and that sure helps.
1. We are on our own for breakfast & Lunch. When I’m not feeling well he gets me my tea and crumpets
2. I prepare our evening meal in the morning before I get tired
3. We make our bed together
4. He sets the table for dinner and does the dishes afterwards
5. I cook dinner and that’s it for me for the day. We eat at 4:30pm because any later I’m to tired to cook
My greatest blessings is my husband and the wonderful doctors I have. I have been doing Rituxinin for over 8 years every 8 weeks and it keeps my numbers under control.