Go-To Treatment Time Activities
Overall, people with CF spend a significant amount of time completing treatments, taking medication, and doing necessary maintenance. Out of pure curiosity, I recently sat down and calculated how much time I truly spend doing airway clearance according to the hours logged on both my Vests. I'm aware CF takes up a significant portion of my day, but I was still surprised at the “milage” accrued.
The grand total: 1,400 hours of vesting. A total of almost two months of continuous treatment time within the past couple of years. This made me wonder: what do I do during all that time? What do other people with cystic fibrosis do for entertainment during their treatment time? What habits have they developed to make it bearable?
Entertainment during cystic fibrosis treatment
Tune out to podcasts and audiobooks
One of my favorite activities is listening to podcasts and audiobooks while I do my breathing treatments and vest therapy. There is something about putting in my earbuds and drowning out the loud noises of the nebulizer and Vest motor that is really relaxing. As a busy young mom, It’s a time where I can zone out while simultaneously caring for myself--that doesn’t happen organically much throughout my day. I guess I would call this time my “me time”.
Right now, I stream true crime podcasts and enjoy following Reese Witherspoon’s book club on Hello Sunshine. I use an app called Overdrive to rent audiobooks through my local libraries with my library card. It’s been great during quarantine when libraries have been closed and risky to visit upon opening. I get my fill of amazing discussions and stories and get to strengthen my mind while caring for my body.
Catch up on daily chores
Although not the most sought after activity, chores need to get done. This is where my mobile Hillrom Monarch Airway Clearance System shines. Since it’s battery-powered, I can vest while I move around the house tidying up. Previously tied to an outlet, being mobile while vesting is a new experience, so cleaning is neutral in my mind.
It feels productive to knock out two activities that need to get done for our house to be functional--healthy lungs and livable home--all in the same space.
A good day's work
I try to devote at least part of the time carved out for airway clearance to my work. Thankfully sharing my experiences with CF on this platform is my job, and I enjoy it so much! It is incredibly hard to work in a traditional setting with CF, in my own experience. It’s been a blessing to be able to have a job that also supports my need to fit in my treatments during the day. I dare say this opportunity being an advocate at Cystic-Fibrosis.com has made me healthier!
Whenever I sit down to do my airway clearance, rest assured I always have a hot drink with me. Coffee is my lifeline. I need it to survive this crazy life. Honestly, it doesn’t matter what activity I pick, the association between treatments and coffee has made airway clearance something I now look forward to. I actually look forward to it. Has the solution to compliance always been this simple? It only took me a couple of decades to figure it out!
How do you say entertained during CF treatment?
How much time do you spend doing airway clearance? What are some of your favorite activities to do during airway clearance? Have you found any types of entertainment that makes cystic fibrosis treatment more bearable? Share in the comments below!
Have you (or a loved one) been experiencing any negative side effects from Trikafta?