Nine Ways To Make CF Care Easier And More Fun
Cystic fibrosis care is overwhelming, monotonous, and exhausting most of the time. Often taking care of myself feels like a vicious, neverending cycle of the same routine over and over again. What hurts the most is you can’t take a day off. There’s no vacation when things get too heavy or you lack the inspiration to carry on. Sometimes, you have to choose to see the joy in the little things to make cystic fibrosis care a whole lot easier and more fun. Here are nine ways to achieve that!
1. Switch up your setting
When things get really tough and I can’t bear sitting down to do another round of airway clearance, I try a change of scenery. Luckily, I’m blessed enough to have two airway clearance vests: the Hillrom Monarch--which is mobile--and the traditional Hillrom Vest that needs to be plugged in. Sometimes, I take my Monarch to the sun porch and enjoy completing my treatments in a refreshing setting.
2. Add stickers to devices
I know this is the silliest thing ever, but I love to put stickers on my continuous glucose monitor (CGM) that tracks my blood sugars with CFRD. There’s great sites that sell stickers for diabetes supplies like CGMs, insulin pumps, and glucometers. They really brighten my day and are a small reminder that I am more than a broken body with robotic parts. Astronauts in space with orbiting cookies are this week’s pick!
3. Bluetooth headphones
I like to watch TV or Youtube as I do my airway clearance twice a day. The only problem is the machines are so loud, I can’t hear the TV without it being on volume 100. Although a minor annoyance, Bluetooth-connected headphones are a great solution to this common CF problem.
4. Functional pill organizer
Save yourself the time, trouble, and effort, and invest in a functional pill organizer for all your daily medications. Having my pills in one place is such a simple step that really improves my adherence. I use a weekly pill organizer that has removable compartments for each day of the week so I can take it on the go if needed.
5. IKEA treatment cart
If the CF community had a live-saving, must-have item, it would 100% be a treatment cart like the IKEA Raskog Utility Cart. It’s your one-stop treatment shop, and I find it really convenient to have all my meds, vest, and nebulizer in one place. If IKEA isn’t your thing, recently, Target, Walmart, and Michael’s have had their own version of utility carts available.
6. Positive traditions
As a little girl, I remember getting a cookie and stopping to watch the audio-kinetic ball machine by George Rhoads (still in the same place after 25 years) after every doctor appointment. In my mind, it’s a positive memory that helped me cope with stressful and scary doctor appointments as a child. I have similar positive traditions as an adult such as getting coffee before an appointment or treating myself to one of my favorite downtown Thai restaurants after.
7. Good relationship with CF clinic
I have the best CF clinic and doctor in the world. I feel like I can talk to my doctor about everything and anything, but I know that’s not the case for everyone living with CF. Consider finding a different doctor or switching CF clinics if you are in that situation. Although a difficult decision, having a good relationship with your clinic will impact your care.
8. Lean on your CF besties
Emotional support and friendship from others living with CF undoubtedly makes my experience easier and more fun. My CF friends understand my joy and frustration on a deeper level than my healthy friends could ever achieve. As an adult, I realize support is just as important as pills and treatments.
9. Reward yourself
Lastly, it is OK to reward yourself for all the hard work you put into taking care of yourself day in and day out. My mom always said we make it look easy, when it’s not. Whenever I feel guilty for buying myself a book or something off Amazon, I remind myself I deserve it because I am adherent to taking the very best care of my body!
How do you make your cystic fibrosis care easier and more fun? Share below!
Have you (or a loved one) been experiencing any negative side effects from Trikafta?