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.
5 thoughts on “This Body”
Wow, what a story, I just have to say what an inspiration you are, how very beautiful you and your decision to enjoy life are, you are a blessing, thank you so much for sharing. My prayers are with you and your family.
I had no idea your day was so full of of such strict routine and of
so much medication. You are truly amazing…. I am happy for you that you
have such a strong support system in your family and wonderful husband. Having
a big cuddly kitty is a nice bonus too!
Thanks Aunt Margie! It is pretty packed full but you are so right that Sybil makes me night time treatments so much better ❤
Janeil!! You are so amazing and brave! I cannot imagine doing all this every day and still having a Smile on your face!! You go girl! I don’t know if you remember me but we met through your sister and I even spent a weekend with your family at the beach. I just wanted to let you know that you are awesome!! Keep it up!!
This sounds like me. Very compliant…for 44 years. That’s right. 44. I still go dancing at 37 percent lung function. No oxygen. I’m on IV’s a lot. Have been since 5. Sometimes I can go 2 years without them…then I’ll spend half a year in the hospital. I have a degree. Worked 3 successful careers and at 35 gave birth to a healthy baby boy. HUGE SUPRISE. It has been harder as a parent. I have a lot of guilt. I can’t work anymore and trying to take care of me and him is REALLY HARD. In married but my husband only tolerates my illness. He doesn’t support it or pick up the slack. My son is mentally scarred from seeing me get so sick and my health changed after him even though I met the lung function criteria and went full term. My goal is to see him graduate. That’s ten years away. I’m very tired of fighting now and have many complications and infections of living with the disease for so long. I have to really fight to stay alive and that means sometimes I’ve had to fire doctors and go two states away to get help. It’s getting hard to be as optimistic as I once was. I will never have a lung transplant by choice and I have made peace with my life..here or in the next but I’ve had to face it a lot since having my son. I do feel like a huge burden to my family now and don’t have a good support system anymore. I’m happy your doing well. I sometimes wish I had adopted instead of having my own child because I wouldn’t be so sick for my child. I feel very guilty putting him through all this. If you ever want to talk you can email me. I wish you the very best. It sounds like you follow your gut. That will keep you alive. 😊