As an adult with cystic fibrosis (CF), I am part of the majority of the CF community. While this disease was once considered a childhood disease, scientific advances have allowed us to grow up, age, and adapt to lives we would never have foreseen 10 or 15 years ago.
At 31, I’ve realized that the best way to maintain my physical health is to limit myself and the time and energy I can devote to events, people, or tasks. One way to be the healthiest version of myself is to set boundaries around what I can and can’t do in a certain time frame. I’ve also decided to take care of my mental health by speaking with a therapist to work through many of the underlying issues and stressors I’ve struggled with for years.
I’m learning that I need to take care of myself first and accept help when it’s offered.
Address my health
If you’ve been reading this column for a while, you may have noticed that I don’t write as much as I used to. Since I turned 31 in October, I’ve been in the hospital four times, starting the day after my birthday. I haven’t been in the hospital that much since I was a child, since infancy. That’s partly because of what growing older with CF brings.
The other reason, however, is that I didn’t take proper care of myself. I didn’t properly disinfect my nebulizers after use, I didn’t do my physical therapy as I should have, and I didn’t always manage my cystic fibrosis-related diabetes in the best possible way.
In short, I sabotaged myself and went back to being that confused 17-year-old who wasn’t sure if he would make it to 30. The difference now is that I have a wife and two dogs who need me, in addition to my family and friends who have been there for me.
I know I’m not alone. Many adults with CF struggle with the new life they’ve been given thanks to CFTR modulators like Trikafta (elexacaftor, tezacaftor, and ivacaftor). However, I don’t take modulators because I have nonsense genetic mutations.
This situation came to a head when my wife and mother made it clear to me that I needed to take better care of myself if I wanted to grow old and have a long future. This sounds like a no-brainer, but I never made it easy for myself.
What I have learned, however, is that I feel better and healthier since my wife and mother reached out to me, even though I was in the hospital just last month. I know this sounds paradoxical, but my progress in cleaning my breathing machines, taking the right amount of insulin, and getting the right treatment has made me feel better despite being in the hospital. I have even gained some weight, something that had been difficult for me over the years.
Hopefully I can continue to grow emotionally and physically.
Note: Cystic Fibrosis News Today is purely a news and information website about this disease. It does not provide medical advice, diagnosis or treatment. This content is not a substitute for professional medical advice, diagnosis or treatment. Always consult 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 stimulate discussion about issues related to cystic fibrosis.
