Insomnia is so common with cystic fibrosis (CF). I find it a miracle when I can sleep for more than 4 to 5 hours at a time. Some days even an hour uninterrupted is better than nothing. I have gone a full 24 hours without sleep and I was miserable. Lack of sleep does contribute to a lot of things, such as bad moods and being slouchy and tired all the time.
How CF contributes to insomnia
I know one thing with 100% certainty, and it’s that I will not sleep well tonight. Antibiotics, not breathing right, and pain are all contributing factors to why I am not resting the way I should. CF means, in my world, that I won’t sleep.
Side effects of antibiotics
Antibiotics contribute to my lack of sleep for a number of reasons and part of that is the side effects. Side effects can range from rapid heartbeats to making me cough up more mucus than my usual amount. Antibiotics ignite my joint pains to a 10, and many times those pains keep me up because nothing helps to relieve that pain.
I don’t want to be reliant on pain meds, so I only take them when I am on the brink of unbearable. Otherwise, I will just deal with it.
Medications schedules disrupt my sleep
Antibiotics also have schedules, depending on if it’s home infusions or inhaled in the nebulizer. Some nebulizers are every 4, 6, 8, or 24 hours, and that schedule messes with anyone’s sleep.
Trouble breathing is another reason CF contributes to my insomnia, and that’s difficult because some positions are challenging to rest in when you have bad lungs. I cannot sleep flat on my back and I usually have to sleep slanted up and to my side. My lungs have holes and fill with fluid and mucus, so being slanted and on my side allows the mucus to come out easier. I spend a lot of time coughing up mucus during the night.
My sinuses fill with mucus and swell up, so I do nasal rinses every night to clear them. However, they're usually swollen again within the hour and I am back to struggling to breathe out of my nose. I use a nasal strip to help, but I usually cannot breathe out of my nose, no matter how many polyp removals I’ve had. I even had a complete nasal reconstruction to help rebuild my damaged sinuses from all the polyps, but it is what it is.
The bright side of insomnia
While I struggle to get a full night’s rest, I can look at the bright side of being able to see my husband sleep peacefully. I can enjoy watching the sunrise (when it’s visible) and I use that time to read or find ways to relax until I can join my husband in dreamland.
It’s important to always find ways to find peace in troubled situations, because while there are so many things that keep me from sleeping as I should. At least I’m alive and fighting for another day.
Have you had a similar experience? Share your story with us!
Have you (or a loved one) been experiencing any negative side effects from Trikafta?