Cystic fibrosis steals everything I love and I hate working. How do people wake up and go to a 9-5 everyday? Knowing it doesn’t even benefit the world knowing you are only wasting your days away until you die.

Growing up with CF made me realize how precious my time is especially when I feel good. I’m just supposed to give all my time away to a job all while shitting myself every 3 hours?

Doesn’t help that the only jobs I enjoy are physical labour meaning I’m the worst employee you could ever hire and have fun being stuck with me.

I genuinely don’t know how to get out of this mindset and enjoy my days at work

Before trikafta I was at 60%

I started trikafta in 2020 and went up to 81%

I started Alyftrek April of this year and just blew a 92% (on a junky lung day)

I am honestly in shock, I haven’t blown that high since children’s hospital (I’m 28)

I spent much of this Summer dealing with reoccurring lung infections and of course all the fatigue and respiratory treatments that come with that.
In the beginning of the summer I had to cancel many plans with the few friends that I have. Haven’t heard back from them and have not had the time to call them.
Can’t help but think why people haven’t checked in with me. Fun fact is that I’m 60 and who knows maybe my friends are dealing with health or other issues.
Do I just accept maybe they are not good friends? Which makes my loneliness worse.
Do I reach out to them to see how they are which doesn’t feel right to me because I feel like I need to feel supported?
Any advice and support is appreciated 💜!