Today at physio, there was a person (I'm keeping it vague for confidentiality reasons) who was struggling with the 20 minute treadmill walk. They were checking their oxygen levels every 5 minutes or so resulting in a lot of loud beeping as the machine beeps whenever levels are below 88%. Afterward, the physiotherapist had a long talk with them about how it was time to decrease the intensity of their workout as their oxygen levels have been on a slow decline (I realize that it is super creepy that I know their entire conversation but it's really hard not to overhear what is happening 2 feet away). The person looked so upset that I wanted to give them a big hug and tell them it is not their fault their lungs are failing.
The person looked how I felt back in Nov after my 6 min walk test when my oxygen levels dropped earlier than they had in the test a month prior. Despite the fact that I had started physio during that month and was doing all I could in that time. It is so hard to be physically declining when you follow the treatment plan and exercise three times a week. It can feel like there is no point in trying because trying doesn't stop the lungs from failing. It does not guarantee success. Hell, not only does it not guarantee success, it doesn't even guarantee being able to maintain a level of health.
Everyone with CF or any other degenerative disease has had to come to terms with this lack of success at some point in their lives. The idea that if you work hard you can succeed and 'beat it' doesn't work for us. There is no 'beating' some diseases. We don't get to see it slowly reduced or eliminated from our bodies. It is something that is always there and is always getting worse.
You can do everything right; aerosol masks twice a day, exercise regularly, stay away from smoke, eat healthy, take all medication regularly, and still end up needing a lung transplant. The best you can hope for is to delay the decline as long as possible. Following a good treatment plan can help but the disease will progress despite anyone's best efforts. The hard part is that the body adjusts so easily to small declines that the change can be almost imperceptible on a daily basis. Until you wake up one day and wonder when it became so hard to climb a flight of stairs.
I don't think the frustration of degeneration gets any easier. Nothing is harder than making the best possible effort and still feel as though you are failing. It is hard to adjust from blaming yourself to accept that it's out of
your control. Or to accept that all you can do it control what you can and
realize that while your efforts will not stop the decline, it may help
delay it somewhat. And sometimes delay is all a person needs. Delay can mean the difference between transplant or no transplant.