While making small talk with a friend last weekend, I asked what she had done that day. She shared that she had gone to class, worked in her professor’s research lab, and hung out with another friend — all before our conversation at 4 p.m.
“Dang, dude. Way to be productive!” I said, and she giggled.
“Thanks!” she replied. “What about you? What have you done today?” I hesitated to answer, realizing with embarrassment that anything I might say would make me seem … well, lazy.
Until that moment, I had been proud of my day; in my book, it had been a productive one. First, I had taken a bath. Because my port-a-cath is currently accessed (meaning a needle is sticking out of my chest 24/7 and needs to remain dry so as to avoid getting infected), I can’t easily or comfortably take showers. It’s not easy to take a bath, either, because if I dip just a centimeter too deeply in the water, it’s game over. But your girl was honestly getting pretty ripe, so I sucked it up and did the whole shebang: It was a 45-minute process to wash my greasy hair, cleanse my smelly body, and shave my gorilla legs, but I did it!
My ambition didn’t stop there. After my bath, it was time for Casper’s. Who’s Casper, you ask? Oh! Easy. That’s my dog. He’s very cute, very playful, and very not in favor of holding still when receiving baths. By the time I was done with him, my entire bathroom had basically gotten a bath, as well. I was so sweaty by the end from keeping him from jumping out of the tub that I had pretty much undone MY bath, but what did it matter? My dog smelled like vanilla and oatmeal!
From there, I moved on to ingesting various things. (Don’t worry, all legal.) These included, but were not limited to, the following: water, pancreatic enzymes, avocado toast, levalbuterol tartrate inhalation aerosol, orange juice, a little bit of mint toothpaste (which was an accident and did not taste good in combination with the orange juice, mind you), a banana, Allegra, various vitamins, my own phlegm, and a bunch of other things you probably don’t care about at this point in the list.
For the sake of not dying as quickly as I normally would, I also had to do a few strange things to my body, such as putting on an inflatable, shaking vest and sitting in it for 20 minutes; squirting some sort of salty mixture into one nostril and allowing it to pour out of the other (along with remnants of, I’m fairly certain, my brain matter); and connecting a pressurized grenade to the hole in my chest and letting whatever’s inside it seep into my body. All in the name of health, right?
From there, I needed to run an errand, and as the errand was far from home. I asked my friend to drive me. And now we’re back to the beginning.
So … what had I done, that day?
According to my therapist, a lot. (Yes, guys, I had to take this story to therapy.) She says — and I think she’s right — the fact that I wasn’t embarrassed about my day until speaking to another person shows that my problem is not with myself. At first, I was proud of my day. I was proud of myself for taking care of myself, and with cystic fibrosis, it’s a full-time job to do so. But since people without CF can’t fully understand that concept, I anticipated I would be judged by how little I had accomplished in my day compared with the average person. I felt ashamed and embarrassed. Suddenly, I was no longer proud of the productive day I had experienced, and I didn’t want to share it.
Being proud of myself is something I’ve struggled with for years, and the feeling that I don’t “do” anything is something that still haunts me daily. But having people like my therapist, my family members, my best friends, my boyfriend, and even myself to affirm that I’m doing great things despite huge challenges, minimizes those ghosts every day.
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 Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.
We are sorry that this post was not useful for you!
Let us improve this post!
Tell us how we can improve this post?