I feel more tired when my infections are more severe, but being in the hospital makes it difficult to sleep for decent periods of time. At my previous clinic, where we had a dedicated CF floor or wing, the nurses would just hook up my meds whether I am awake or not - I had learned to sleep in positions so that whatever arm my PICC line is in, is accessible. However, in my current hospital, I can end up on any floor with nurses who might see one CF patient a year and not "get it", so they wake me up.
The bigger problem is the frequency of people coming into my room - the floor doctor, the pulmonary team, infectious disease/internal medicine, the pharmacist, respiratory therapy, the social worker/patient advocate, the glucose checks (they don't let me do it myself), and vitals at the beginning and end of every shift (even the 4 hour shifts!). Of course, the right person never comes in when you have an important question!
Another issue is that my blood pressure often plummets when I am sick (especially at night), and the nurse/CNA is coming in constantly to monitor it. And, of course, the stupid electronic infusers that beep and say "Occlusion" when there is one teeny bubble in the line, and it takes an hour for them to come clear it out. That certainly makes it tough to nap through!
If I am inpatient for the entire two weeks (which thankfully hasn't been for a few years), as I start feeling better towards the end, I don't need as much monitoring and am able to request six hours of uninterrupted time at night.
Doing IVs at home is convenient, but when you have to do them yourself, you might only have 4-6 hours in between infusions, and that's not a lot of time to get into a deep sleep. You really have to be awake to make sure you sanitize, flush, hook up, flush, and detach (close the line or the blood will pool in the line...eeeww). My hubby will sometimes run my very late or early morning infusions, but we have to plan it because of his work responsibilities. My family outside of my hubby don't help at all, so it's just us.
