I believe the most common misconception about CF life is that we cough a little, use an inhaler and go about our day. I know this is what I have allowed people to believe. The reality is much more challenging. The majority of my day is devoted to working to feel “normal”, pushing through fatigue and fighting infection 24/7. I am always amazed at how much this body can endure, how many drugs can I pump into it, and how normal I look on the outside. I can only imagine what kind of warfare is going on under the skin. Here is a sample of what my day looks like. My daily goal is to keep this body alive and my heart full of happiness.
6:30am- Wake up feeling tired after a night of coughing and keeping the husband awake (send love to Peter because he is the champion of champs)
7:00am- Begin vest treatments for 30 minutes, inhale albuterol (10min), inhale hypertonic saline (10 min), inhale pulmozyme (5 minutes), inhale antibiotic of the month (10 min), cough, apply make-up, cough, brush hair, cough (sometimes throw up)
7:45am- Take spiriva (1 puff), take symbicort (2 puffs), take a cocktail of 15 pills, pack fatty breakfast and lunch
8:00am- Arrive at work, check blood sugar, inject insulin, take enzymes (4 pills), eat yummy breakfast
10:00am- Check blood sugar
12:00pm- Inject insulin, take enzymes, eat yummy lunch
2:00pm- Check blood sugar
5:00pm- Head home to do normal people things like cook dinner, fight the urge to get in bed and ignore the aches
7:00pm- Inject insulin, take enzymes, eat yummy dinner and overdose on candy
9:00pm- Check blood sugar, begin vest treatment with Sybil cat (30min), inhale albuterol (10min), inhale hypertonic saline (10 min), inhale pulmozyme (5 minutes), inhale abelcet (literally 1 hour), cough, pet cat, cough, pet cat
10:30pm- Take cocktail of 10 pills and slumber
*Add about 1000 coughs throughout the day and that is pretty much my routine. Overwhelmed? Welcome to my life. I am thankful that I am able to find joy in this routine (most of the time). Do I like taking a bazillion drugs? No. Do I like poking myself with little needles? Um, no. Do I fight fatigue? All the time. Do I always feel like I am forgetting something? You betcha. There are definitely moments where I want to throw my hands up, cry, and give up. It’s exhausting to do this everyday. It is even more exhausting to do this and act like I am normal. Breaks do not exist and CF never packs a suitcase to go on vacation. I ask the Lord each day to help me find joy in those moments and thank him for the ability to life a remarkable life in the midst of a failing body. He grants it.