My mom has always said that I’m a “Smart kid, no common sense” I proved that this weekend.
My friend Lauren and I were going to visit Kyle (my boyfriend) for the weekend in Maine. Friday morning, being the smart, prepared CFer that I thought I was, I packed up my vest, nebulizer, and e-flow in my trunk then I placed my medication (hypertonic saline, pulmozyme, and study drugs) in my lunch box to keep in the fridge at work since I would be leaving straight from work. Once I got to Lauren’s house, I packed up her car, and quickly took what I wouldn’t need out of the backpack I took to work… including my lunch box… because why would I need a half eaten sandwich and an apple core?
We arrived in Maine about 3 hours later, and brought in my (amazing new, small) vest, my nebulizer, and e-flow. Then I realized my EXTREME stupidity… that all of these things were pointless without the medicine I had to do with them. 3 hours away from the medication that I haven’t skipped in MONTHS, I was pretty angry with myself.
But what can you do? I’ve obviously learned a lot from dealing with things beyond my control having CF, so I dealt. I used what I had available (I did remember my advair and daily pills at least) and I dealt with the consequences of not having the others. Most importantly, I didn’t let my frustration from my lack-of-control without my nebs stop me from running. On Saturday morning, Kyle and I went for a 3 and 1/2 mile run around “The Boulevard” in Portland (my new favorite place to run by the way!). I felt GREAT during and after the run (thanks to Kyle singing at the end and making me laugh throughout). After, I tried doing my vest but after a couple rounds, I realized it was ineffective without hypertonic saline and pulmozyme. So I had Kyle do some good chest PT, and we would see how I felt.
Halfway through the day I did get a little bit of a fever and felt really tired, my lungs craving the medicine I had forgotten. So I took a Tylenol and quick nap and I felt better. The next day, we woke up and went hiking. I surprisingly felt pretty good during the hike. Even though I was breathing more heavily than I normally would have, I was loosening up any stuff in my lungs. I felt alright during the day Sunday other than being a little more fatigued and my lungs a little more tight, but once we got home Sunday night, I did my vest and nebs right away and was feeling back to normal.
This weekend was a big reminder of how thankful I am that I have control over my CF by doing my treatments every day. Without them, I was definitely reminded of the fact that I have CF a lot more throughout the day. It was frustrating not to have that control when my nebs are something I depend on every single day. I am this compliant because if I wasn’t, I would be A LOT sicker than I am. It reminded me of the times when I was younger, when I would skip my treatments (sometimes for days in a row) because I would rather “be a kid”… More often than not, I ended up in the hospital a week later or I found it hard to bounce back and the hospital was now only a month around the corner, when I could have stayed out by taking care of myself. I’m so glad that it finally clicked to be compliant.
Honestly, I hated not having my nebs with me this weekend, I don’t like having to stop halfway through the day and go to sleep because my lungs are making me tired, especially when there was something I could have done about it had it not been for my cluelessness. But the bright side is that you don’t need anything besides sneakers to exercise (and I remembered those!), so I was able to get some airway clearance that way. Exercise was ALMOST able to replace my daily therapy, and that’s a powerful reminder how much running is helping me. But I know for sure that I’ll definitely check and double check that I have everything I need next time, I’d rather be feeling at my 100% best with EVERY resource I have available!
I write this blog while doing my vest and nebs on my living room couch, thankful for every medication that has been developed to help us CFers out, and ESPECIALLY thankful that my medication isn’t 3 hours away today.