CF Is Predictably Unpredictable

I don't make many plans anymore, because having cystic fibrosis means I never know how I'll feel from one day to the next or what I'll be capable of doing physically. 

| 4 min read
Marieliz-Landa-Headshot
Marieliz Landa
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I can plan to go out to dinner, out to the movies, or even visit a friend, but there are no guarantees that CF will let me follow through. With CF, I can look like my normal self on one day and then not recognize the face I see looking back at me in the mirror the next. Over the years, invitations from friends have slowly dwindled until I rarely get calls to go out.  It's gotten to the point where I do not plan anything anymore.

If I do go out, it's a long process with tons of questions. I have to think about so many things that others without CF don't. How many people are going? Is it indoors or outdoors? Any smokers? Will anyone be sick? Can I make this walk even though my lungs hurt? How many stairs? The list goes on and on.

I can watch life pass me by and stare out the window. I'm safe at home, however, it's sterile and I'm not doing much here. But, that's CF. It's isolating and it's unpredictable. When I do go out, I make sure that I can handle it because going out is exhausting. My lungs aren't what they used to be and I have to be conscious of that. CF can range from days where I can go anywhere and enjoy the wind against my face to days where I can't move because my arthritis has decided to become too agonizing to let me walk and my lungs burn and ache. Simply going outdoors is not always in the cards.

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I miss going out the ways I used to, but I plan differently now. If I am invited anywhere, I never say “Yes, I'll be there,” I say, “If I feel good, I'll try my best to make it.” Life doesn't stop; it just gets a little slower for me because I cannot function at the rate anyone else around me does. My body has slowed down. It's at its own level of functionality and I accept that.

I live being grateful that I'm still here and I am thankful for what I have because tomorrow is never guaranteed. I can't make plans to do this or that like others can, but I can do things spontaneously on the days that I feel good. I can enjoy the day because I know in the back of my mind that I may feel badly the next day or even have an episode that will knock me off my feet while I'm out. I live one day at a time, the best way that I can, because that's all I can do right now. If my sinuses clear up, and I can go outside, and no one is smoking nearby, I'll smell some flowers close to my house or enjoy some fresh air while sitting on my balcony watching life go by. I'll be perfectly content, too, because the day before it may have been too painful to walk outside.

CF is unpredictable. It affects each CFer differently. Some can do things that others can't, but we all have one thing in common: One day, we will see a different face in the mirror looking back at us. It's a face we recognize. It's CF reminding us that it's there and it's not going anywhere.

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Marieliz has atypical cystic fibrosis and bronchiectasis. She is a member of the patient advisory council at Presence St. Mary and Elizabeth Medical Center in Chicago, where she ensures patients receive top care and attention from medical staff. Marieliz enjoys getting involved in Foundation projects and currently lives in Chicago with her husband, Michael, and they share an adopted cat named Penelope Marie.

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