Cystic fibrosis stress is difficult to describe to others outside of the disease’s reach. But it’s not that nuance of stress bothering me tonight, though when I think of going back to the hospital one day I feel like an ex-con who says he’ll never go to prison again. They’ll never take me alive. Now that feels stressful.
Where's the hospital bed in this ICU picture?
Tonight, the part of CF irritating me revolves around being stress resistant to non-CF related stress. At one point in my life, in my 20s, I had that power. I didn’t care what happened and somehow survived my own consistent stupid acts of defiance.
I want that feeling back.
Cystic fibrosis should come with superpowers when it comes to fighting work and life stress in general. But it doesn’t. I worry about too many things and I feel I shouldn’t. CF should protect me from the bullshit. Perhaps, it helps reduce stress a bit. After the last two embolizations, I don’t sweat the small stuff at work as much because I don’t know how long I’ll be able to work. I’m in extra time now. I don’t get too bent over trivial matters.
That’s not to say I’m not a perfectionist. I care about the work. I just try not to worry about what might go wrong or when something does. There is always a solution. Unfortunately, not everyone has spent a portion of their lives in the hospital. My co-workers stress over details that will never make an impact in life, or they’re afraid to take risks. Fear overwhelms them at times.
Why can’t I ignore all of these stressors when I know today might be my last? Well, bills have to be paid; daily life must be lived. I need health insurance. My life is not the romantic vision of dying with the mantra of  “you’ve got two months to live so go crazy and take care of your bucket list.” It’s a constant internal back and forth of living for today and planning for tomorrow. Blow all your dough today and you’ll be poor tomorrow.
Life would be much easier if when we were born, we knew exactly how much time we had. I’d like to know when I have 60 days left to go. Watch the partying of all time begin – I wouldn’t worry about a thing. Not one thing. That is until day 61 rolled around and I woke up flat broke, addicted to coke and sleeping in my wrecked Porsche 911 stuck in two feet of Pacific Ocean surf and sand. Worst of all, I’d still have CF.
Life is all about the correct timing of one’s recklessness, isn’t it?
The Unknown Cystic 
I’m always so intrigued by your posts 🙂 They are so much fun to read and portray such honesty in a cohesive and powerful manner. Kuddos fibro.
Thank you so much. What a wonderful, intriguing and thoughtful comment. Thanks for sharing it. I hope you’re feeling better. I haven’t seen any tweets from you lately. Or did I miss them?
I’m doing better 🙂 I finished IVs yesterday and have since just been trying to keep my head above water with school. My last day is December 16th. I can’t wait! Then I hope to be blogging and tweeting again 🙂
Stress has always been a major catalyst for any of my prolonged exacerbations. Such a pain in the ass is stress.
I relate to every part of this post….except for the coke addiction. That’s sooooo 1980’s, Unknown. You need to do something wacky like “whip its” – snorting the gas from the Reddi Whip can. I quadruple dog dare you!
Forgot to mention I’ll be dressed like Don Johnson in Miami Vice. Coral jacket, white pants. No socks.
Just for you I’ll get a whip-it addiction too. They’ll find hundreds of empty containers in my trunk. “Wow, that bagged-head bastard could really hold his whip-its,” they’ll say.