Family Activities with CF Involve More Planning
Every year before winter hits, we like to enjoy the outdoors and go out with a BANG! My husband and I foster children, so depending on number, age, and interest of kids, we plan some type of trip or family activity.
Planning family activities with CF
We currently only have one kiddo, a 4-year-old who LOVES going to the local zoo (he has been with us since 2017). We live only 2.5 hours from St. Louis though, and usually visit the St. Louis zoo once a year. It’s quite a lot larger than our local zoo and our kiddo really enjoys seeing some of the different animals - like kangaroos. I knew the day trip would take some planning, due to my cystic fibrosis.
Here are just a few of the things I do to ensure we are prepared and can fully enjoy our day:
We get up early, pack snacks (high calorie for me), water, sunblock, extra clothes (for kiddo), bring my nebulizer machine, 7 nebulizer cups, and 7 therapy meds (some in a cooler to keep the meds refrigerated). I make sure I have some ibuprofen, enzymes, inhaler, and allergy meds in my purse. I grab a couple toys for our kiddo.
I do my morning and evening set of nebulizers on the ride to and from the zoo. Otherwise, we would leave much later and have come home a lot earlier. This helped to maximize the amount of time we have in St. Louis.
Overcoming barriers to participating in family activities
This year, my lungs were not doing the best that week. I had dealt with a cold earlier on, so my typical 48% lung function was probably closer to 40. I knew walking the entire zoo would be too much and I didn't want to ruin my experience by wearing myself out.
Luckily, I have a helpful and loving sister that always volunteers to come with us on trips. Andrew and I pay for her ticket to the zoo and parking as a small way we can thank her. She says it’s not necessary, but I insist. We always joke her job title for the day is, “Wheelchair pusher, water encourager, and sunblock applier." I could not have made it through the zoo without her.
By the end of the day, I was exhausted and I didn't even walk it. My husband is a super dad for sure, but I think he would struggle to push a wheelchair and stroller at the same time. How do you find a stroller that attaches to a wheelchair?!?
Taking time to care for myself
Anyway, once at the zoo we have fun, but we have to remember to go slow. We make sure to drink lots and eat lots. I start to feel really cranky if I’m even the slightest bit hungry. My body is very aware of when I need to refuel and everyone around me can tell.
CF causes my body burn calories faster, and the sun drains my energy too. I have multiple medications that make me particularly susceptible to the sun. I wear a hat typically and reapply sunblock more often than the bottle says. If we rest, I aim for a shaded spot.
Understanding my limitations during family activities
I know my limits and I know need to watch them. But, we bring my sister along to make sure I listen to my own needs. If I overdo it I can end up sick and miserable the rest of the week.
It’s hard not being able to push my kid around in his stroller or be the one to pick him up to see the animals. But that is okay, I’m part of the experience and I’m glad to make these memories.
I know the limits of my body. I’m thankful my husband and sister can help me during these fun family activities. I won’t let CF hold me back from fun activities, events, and trips. Even though the travel is rough on me, I absolutely love the memories I’m making with my family (and all the kids we foster).
I just have to be a little more careful, work a little harder, and plan a lot more. Simple trips end up a little more complex than usual. But, in the end, it’s always worth it.
How do you plan for family activities with CF? I'd love to hear your tips and tricks in the comments below!
Have you (or a loved one) been experiencing any negative side effects from Trikafta?