This article is going to be a mix of two things: a recent current health update and a little bit about some frustrations that come with Cystic Fibrosis.
As I've said in previous articles, my health the past year has declined the most it has ever declined. Though I am still considered a "healthy CF patient," the year has been very different for me.
In previous years, I would be able to go a week without remembering I had cystic fibrosis. Aside from having to take my treatments and medications twice a day as I had since I was diagnosed, I was able to go out and do everyday life without some symptom of CF slowing me down. In the past year, I've found I always become out of breath after flights of stairs, I get exhausted from runnings errands if it's more than just a single grocery store run, I can't go anywhere without my blood sugar monitor and packs of fruit snacks in my purse because my blood sugar is out of whack, although always having fruit snacks at my reach is a plus because let's be honest, those things are heaven.
The biggest change is I can't go to sleep without doing a breathing treatment right before. There have been multiple occasions I've been at a friend's house and I've had to leave and drive home at 3 a.m. because I was incapable of sleeping due to either coughing non-stop or whenever I would breathe out, my chest would make a weird rattling noise.
To give you an idea of how annoying this is, imagine you're going to sleep and it's silent except every time you breathe, someone clicks a pen. Every. Single. Time. It's all super frustrating.
What's even more frustrating is not having an explanation as to why all of these things have happened in the past year. Numbers come back okay, labs come back okay. Sure, the lung function numbers could be a bit higher and that one lab work level could be a bit lower but from a medical standpoint, everything is fine. Everything is "just at baseline."
That's CF medical talk for every number is coming back pretty close to the average of the past two years, and that means that I should be able to go upstairs and be just out of breath as the next person, or I should be able to sleepover at my friend's house comfortably without feeling like I'm keeping them up coughing at night or leaving at 3 a.m. to go do a breathing treatment.
BUT. WHY. CANT. I?
What is going on that the medical numbers aren't showing? Why after three weeks of IV treatment and five weeks of oral antibiotics do I still feel how I did before I went in when every other time before, I've felt back to my "baseline" at week 1?
I've always seen other people with CF talk about frustrations and used to always think "yeah, having to take medicines every day is so annoying!" but now I see that this is what they were talking about. Getting "good news" from the doctors should be exciting, a relief.
But when I got the "fantastic news" earlier this week that my previously concerning CT scan came back much better than it did when I was in the hospital, a part of me was upset because I was looking for the CT to come back with bad news so that it would all make sense, so that there would be a reason why I haven't felt well and we could treat it and I would feel better.
It's an uneasy and frustrating feeling, not knowing if there's something going on that the doctors can't see or if the actuality of it is that this is my new baseline. But as I've said before, just take one breath at a time and roll with the punches. It also helps to make jokes. For example: after getting up those flights of stairs, sing, as well as you can, the lyrics, "I'm still alive but I'm barely breathing." It makes for some laughs, even if it is just you laughing at your own joke.
