Life Without “Sleep”

This has kind of been weighing on me for a while. I fall into cycles where I feel like I haven’t had a good night of sleep in who knows how long.

Sure, I fall asleep each night, but when I wake, I do so without feeling rested.

My health has be ehhhhhh lately. I’m on an IV tune up right now since, well, I finally have time for one. Hockey season came to an end 10 days ago (no State championship this year, sadly), so now I have a little more time for things – evidently one of those things is a PICC line.

Admittedly I’ve been doing a poor job of trying to sleep. The damn Olympics are just so entertaining (I cannot get enough skiing, and I don’t even like skiing), and not to mention USA Hockey keeps playing at odd hours (thank you time-zones!). While USA Hockey has proven to be a disappointment so far (@NHL), I’m still going way out of my way to watch the games despite needing late nights or early mornings for IV doses.

Beyond all of that, I guess I’ve been sick, which hasn’t helped, and I was on a prednisone burst. The last week of (high school) hockey was a struggle to say the least. I’m one of those CF patients that deal with low-grade fevers, which come and go as they please. They are quite a bit of fun to say the least, especially when you’re working a few jobs.

Couple all that with overnight tube feeds, and you’re looking at a bit of a mess.

Welcome to the Matrix….. as I like to say.


That’s really just the physical side of it.

I think the quest for rest is one of the most underrated challenging pieces of CF. It’s a bit ironic because whenever we’re sick, the first thing out of everyone’s mouth is, “make sure you’re getting your rest!”

The good night of sleep is elusive in the world of chronic illness. The prednisone I’ve been working with has probably been the biggest culprit for the past 10 days, but prior to that, it was the cough, increased mucus, fevers and the general worry that overcomes me when I get sick.

I wouldn’t say that I worry about my health. That’s stupid – it doesn’t help me in the slightest to worry about my health. Rather I find myself worrying about commitments, plans and expectations.

Remember about a week ago when I said CF is a defining part of my life?

Well this is what I mean. It’s pretty f*ckin’ hard to get out there and get a lot done when you’re leaning on Aleve to break fevers, waiting on an IV drip to finish, hoping Pulmozyme thins the heavy mucus enough to cough it out, and trying to take in as many calories as possible to avoid losing more weight. This illness has dictated the last couple weeks of my life.

But that’s okay! I can take the pounding. That’s not hard.

The stress of burdening others (which is probably the first thing that happens when I get sick) coupled with the nervous energy that accompanies the feeling that I’m not living up to personal expectations take quite a toll on me.

Those two things are more challenging to deal with than the parts of CF that we can touch and feel.

…and despite them being less “physical,” they contribute to my sleeplessness in a greater way.

This is where the coping mechanisms jump into action – video games, hockey (watching Team USA since I’m not playing at the moment), and reading.

Ultimately I know that each time I sign up for IV antibiotics my craving for rest will never be satisfied.

It is exhausting to be sick:

  • IV Antibiotic A dose 1, 7am – 8am
  • CF Treatment session 1 8am – 10am
  • IV Fluids 10am – 12pm
  • Breakfast?
  • Lunch?
  • IV Antibiotic B dose 1, 2pm – 3pm
  • IV Antibiotic A dose 2, 3pm – 4pm
  • G-tube bolus feed?
  • Dinner?
  • CF Treatment session 2 8:30pm – 10:30pm
  • IV Antibiotic A dose 3, 11pm – 12am
  • Overnight g-tube feed 11pm – 5am
  • Work?
  • Doctor’s appointments?
  • Homecare visits?

But these parts of my day are why I can’t feel rested:

  • Social life?
  • Coping mechanisms?
  • Sleep?

In fact, if I could do without ONE thing in life – it’d be sleep. I’d be more than happy to chug away at life without ever needing to fall asleep.

But here we are…. The thing my body craves, is the one thing I can’t give it.