When living with CAD, even a short trip can be a nightmare
I was dizzy and lightheaded and just wanted to go to bed
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As soon as I felt the tug on my computer cord, I knew the glass would fall.
My husband, Mike, and I were getting ready to head to Jayapura, Indonesia, from our home in Sentani, a distance of only 22 miles, for an appointment at the immigration office, but it would take at least an hour to get there. Mike, a school band director, was in a hurry to go and get back to prepare for the final semester’s concert, but the shattered glass and my drink had to be cleaned up.
It was just a small incident at the beginning of the day, but picking up the broken shards and cleaning up used all the energy I had. I staggered through the house and out to the car. I hoped I would recharge as we got going.
Why I was tired
The source of my fatigue is cold agglutinin disease (CAD). For four years since my last treatment, I’ve done quite well. But a 30-second exposure to extreme temperatures last February started me on the downward trajectory. I’ve been in the tropics since September, but I still haven’t recovered.
CAD isn’t just a “stay warm” disease. It’s also a “don’t-get-infected-by-anything” disease. My immune system isn’t working well, and anything that causes inflammation or infection triggers the complement cascade. I haven’t been able to get that under control, but instead have been on a roller coaster ride of days where I have enough energy to handle short errands to days when I have to remain in bed because I don’t have enough strength to walk to the kitchen.
I had planned for the trip to the immigration office carefully. We’d borrowed a car so I wouldn’t have to ride my motorcycle. I’d borrowed a walker to get through the lobby. Mike drove, so all I’d need to do was sit quietly. But that was impossible.
What little remaining energy I had melted through my skin and out my pores. Even though we had seat belts, I was still slung around the passenger compartment as we went up and down mountains and around hairpin curves. That particular road is never fun, even when I feel good.
There and back, with no energy to move
We parked in the underground car park, and I got the walker and tried to use it. However, neither of us could figure out how to lock the legs in place. The parking employees dashed into the office and grabbed a quad cane for me, and we were in and out quickly. Everybody — from the parking attendants to the officials who processed our visa extension — was very helpful and accommodated me as much as I needed, but I was still exhausted.
The trip back home was simply a reversal of the journey to arrive, or at least it was until we reached Sentani, where we found ourselves in a traffic jam. It took at least as long to travel the final couple miles as it did the entire rest of the trip.
I was miserable. I had no energy to move. I was dizzy and lightheaded. As soon as we made it home, I just wanted to go to bed.
I melted onto the top of my covers and lay there. I gave thanks that I was still alive and inwardly rejoiced that we only have to go to the immigration office once a year. The workers are still processing our papers. I can only hope they’ll be done with my passport before Wednesday, as I’m set to leave for the U.S. the next day.
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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