Growing up, treatments were never my favorite time of the day. Especially morning treatments. While I looked forward to the relief that my morning dose of medication gave me, I dreaded hearing my alarm. Morning treatments frustrated me so much because they took up so much time. Instead of sleeping, I would have to do a treatment! The majority of mornings, I did a treatment before rushing off to work.
Growing up, my parents made treatments as normal as possible. We had a routine and we stuck with it every day. My dad would wake me up and watch the morning news while I fell back asleep as he did manual chest percussive therapy. Then at night, I'd fall asleep while he watched Star Trek while doing manual chest percussive therapy. All in all, I slept through most of my treatments, but when I got my first vest that changed over night!
No longer did my parents need to get up early to do my treatments for me. I would no longer fall asleep each night to chest percussive therapy and the sound of Captain Picard's voice.
I remember so much about that time. Specifically, I remember the day I got my first vest in the mail! It was a huge day for me and my family! My parents watched as I unboxed the equipment. Then we sat together and watched the instructional VHS that came with my vest. We learned how to set the vest and figure out how to size my vest to be the most comfortable for me. Then my parents and I figured out a schedule.
At 14 years old, I needed help figuring out how to organize my time in the mornings and evenings to make sure that I did my vest on my own. For so long, that responsibility fell on my parents. As I grew older and technology advanced, the responsibility appropriately shifted.
My parents have always been very involved and when I got my new vest that did not change. Each morning and evening, they would make sure I had done all my masks and vest time. Very soon, I was running the treatment show. As time went on and I graduated high school and went on to college, I would need to revisit the schedule I had made. My parents would still help me and I did my best to be as compliant as possible while still going to school and trying to have a social life.
When I graduated from college and began working, my schedule changed a lot. When I was in school, I could schedule my classes around treatments, but school is different from having a job. I had to revisit and rework my treatment schedule.
Streamline the process
As I figured out my new treatment schedule, I realized one thing stood out to me the most - morning treatments. Morning treatments frustrated me more than any other treatment of the day. I needed to figure out what to do because skipping treatments was not, and still isn't, an option. After figuring out what would help me the most, I introduced three habits that helped me streamline my mornings and evenings:
- Get things ready! Each night, I would get my clean nebulizers organized before going to bed and then the clean nebulizers would be placed next to my vest. When I woke up the next morning, everything was right there. I could start my treatment while I was still waking up and staying warm in bed.
- Sterilize nebulizers early in the day. Sterilizing nebulizers late into the night can be so frustrating. I started cleaning my nebulizers while I ate dinner. It made it so that by the time I went to bed, the nebulizers would be dry. That way, there was one less thing to do before bedtime.
- Make sure room temperature meds are all ready to be used. I would make sure all of the medications I would need for the next morning were ready to go. All the preparation would feel so pointless if I woke up and realized that my container of Albuterol needed to be replaced at 5:30am. I would get so irritable as I stumbled in the dark looking for medicine. Making sure my medicine was where it needed to be helped a lot.
A lot of work goes into creating a treatment schedule. Also, a lot of work goes into adjusting to a new treatment schedule. And each person has a schedule that fits them best because no two people are alike. Taking the time to cultivate a morning treatment routine can help when that alarm goes off when it is still dark outside. Doing so can help you feel like you own your time – not the other way around.
Have you (or a loved one) been experiencing any negative side effects from Trikafta?