The Ups and Downs of a Cystic Fibrosis Hospital Stay

Being hospitalized for any length of time is a never-ending grind that never ceases to amaze me, both in good and annoying ways. I wouldn’t say bad, necessarily, but it definitely feels like I’m in a hamster wheel at times.

As I write this, I’ve been in the hospital for about a week due to a combination of early pneumonia and exacerbated cystic fibrosis symptoms. A year ago, I was hospitalized with pneumonia. I’m starting to understand that part of getting older is realizing that maybe I shouldn’t push myself as hard as I once did. As I ponder this, the hamster wheel keeps spinning.

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At times, it seems that we patients tend to forget to adjust our mindset from being at home to being in the hospital. For example, constant questions from doctors might include, but aren’t limited to: “What’s bothering you?” “Why are your blood sugars so high at times?” “Do you think there’s anything we can do differently here with your diet?”

What’s bothering me is that I’m here when I don’t want to be, and my internal list of things to do when I get home keeps growing. My blood sugars are high because I’m hooked up to so many antibiotics and can only do so much moving in a room that’s the size of half a wrestling ring. If I were at home, I’m sure my blood sugars would be lower than what they are here, because I could move freely. My diet would be great if it stayed consistent and wasn’t changed on the fly without really telling me.

Getting some exercise while in the hospital can be challenging. (Courtesy of William Ryan)

Getting a little ‘me’ time — sort of

There are also upsides to being in the hospital. For example, I can rest as long as I want to — until someone wakes me up. I can watch as much television or Netflix as I can — until someone walks in and needs to talk to me. I can even do some reading — until someone needs to talk to me. After I’m spoken to? I can go back to whatever I was doing — until someone else needs to speak with me.

Hamster wheels are generally fast, but at the hospital, time moves slowly. That’s because I can’t do anything by myself; I’m always waiting on someone else to help me. Time moves slowly because I’m isolated from the world the vast majority of the time.

Yes, visitors do come, and they are always appreciated. But when it’s late at night, later than when I’d usually go to sleep, and I’m just trying to have a late-night snack but need someone to get medicine and insulin — that’s when isolation really hits.

I do my best to stay positive through everything here. It’s not easy, but I try my best. As an only child, I enjoy moments when I can sit in absolute silence and watch television or read. Those moments of enjoyment come and go like the wind, because all it takes is the noise from an IV machine to throw me off my game. Or when I try to walk around a room that’s not big enough to walk around in.

I will say, the one absolutely positive thing about being here is that the food has been good. Bad food would just make this entire stay unbearable.

What do you do to stay sane while in the hospital? Please share in the comments below. 

Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.