In the world of cystic fibrosis, I often feel like the new kid at school.
Most CF patients are diagnosed before the age of 3, giving them – and their loved ones - a lifetime to become acquainted with the intricacies of living with CF.
As I’ve mentioned before, I was diagnosed at 16. Just a little over 10 years ago. And I often feel like I have a LOT of catching up to do.
Finding out I had cystic fibrosis as a junior in high school was overwhelming. I did what the doctors told me to and less than two years later I was heading off to college.
Without my parents or doctors around to remind me of how important it was to take care of myself, I let my medications and therapies slide.
It wasn’t until about four years ago that I really started taking this seriously. And I often have questions about what’s “normal” for a CF patient versus what’s something I should be concerned about.
Last night was a good example.
At about 2:30am I woke up gasping for air. I have plenty of coughing fits, but I hadn’t experienced anything like this. I would cough, but was then unable to take a breath. It was as if my throat would seize up, and no air could get through.
It felt like this went on forever, when in reality it was probably just a few minutes. But it left me shaking, tears running down my face, as I tried to pull myself together.
After a few gulps of water and some deep breaths, I was okay. I went back to sleep, waking up just a few hours later feeling completely drained.
And I’ve felt like that for the rest of the day. As if I didn’t get a second of sleep.
No doubt, something like that is taxing on my system. Heck, my body gets tired some days from just keeping my lungs working. But the worrier in me can’t help but wonder if this is a sign of something bigger going on.
I know that “bad” days are just a part of living with CF.
But deterioration of the lungs is the eventual outcome. And nights like last night make me wonder how I can tell a bad day from something worth worrying about.
For now, I’ll just take it easy and monitor how I’m feeling. Hopefully whatever spasm I had last night was just a result of the (awesome) Cto5k run I did and I’ll be back to my energetic self in no time.
CF’ers out there, any advice?
On a more fun note, I’m excited to tell you that this ol’ blog has been nominated for a Mobbie in the Best Personal Blog category! If you have a second, please head on over and put in your two cents (whether it’s for my blog or not!). You can vote every day from now until November 10.
One more thing: I wanted to thank every single one of you for reading. There have been times where I wasn’t sure if this blog was worth continuing, but whenever I post something difficult, your response makes me realize that this is exactly what I need. So thank you. Your sweet comments, thoughts, and words of encouragement make me feel more supported than I could ever express.