A lot! Raw treatments alone are 21 hrs. This does not include nor does your list include cleaning nebs, ordering meds, organizing meds, insurance phone calls, making appts, paying bills, picking up meds at pharmacy, meal preparations as well as shopping for high calorie diet....
When I applied for SSDI in 2007 they wanted to know about my day this is how I responded:
My Day
7:00am wake up,
On the way to the bathroom a coughing fit usually requires me to catch my breath and rest.
7:00am - 7:15am - prepare a high caloric shake since many of my AM meds are to be taken with food yet eating a breakfast consisting of solids will result in vomiting during my AM physical therapy session.
Take 6 pills.
7:15am - 7:30am - assemble nebulizers and insert medication.
7:30am - 7:50am - inhale albuterol (bronchial dilator) via nebulizer.
7:50am - 8:35am - inhale hypertonic saline via nebulizer.
Often times at this point I've coughed so much that I must change my underpants due to incontinence so I stop to get dressed for the day.
8:35am - 8:50am - get dressed, brush hair.
9:00am - 9:45am - Strap on The Vest for physical therapy to help loosen mucus in
my lungs. The session stops every 5 minutes to allow me to cough and spit the loosened mucus.
9:45am - 10:05am - inhale Pulmozyme via nebulizer.
10:05am - 10:35am - inhale Tobi antibiotic via nebulizer.
10:35am - prepare and eat breakfast of cereal with fruit and milk. Take pancreatic enzymes x3.
10:45am - Inhale Advair steroid, wash mouth out to prevent oral thrush (yeast
infection). Brush teeth.
11:00am - 11:40am (Cleaning process takes 15 minutes of my active participation)
Disassemble all 4 used nebulizers. Clean nebulizers using warm soapy water then sterilize them by leaving them in a bath of hydrogen peroxide for 30 minutes. Create sterile water by boiling for 15 minutes.
Put a load of laundry in the washer.
Drain hydrogen peroxide and rinse parts with sterile water. Put parts aside for use when they are dry.
11:45am - 12:30pm - place phone calls regarding scheduling medical appointments, paying medical bills or clearing up health insurance coverage issues.
12:30pm - 1:00pm - prepare and eat lunch consisting of leftover's, a sandwich or a frozen entrée. Take pancreatic enzymes x 3 and noon pills (4 total)
1:00pm - 1:15pm - clean breakfast and lunch dishes.
1:30pm -3:30pm - nap
3:30pm - eat a snack (yogurt or granola bar)
3:45pm - 4:15pm - Exercise lungs using Acapella handheld device to help loosen mucus in my lungs.
4:00pm - 5:00pm - Run an errand in the car (such as go to pharmacy to pick up prescriptions, make a deposit at the bank, etc.)
5:15pm - Husband and son return home from work/daycare. I watch son while husband prepares dinner.
6:00pm - Eat dinner with pancreatic enzymes x 3 and evening pills (4 total)
7:00pm - Put son to bed.
8:00pm -8:15pm - assemble nebulizers and insert medication.
8:15pm - 8:35pm - inhale albuterol (bronchial dilator) via nebulizer.
8:35pm - 9:20pm - inhale hypertonic saline via nebulizer.
Often times at this point I've coughed so much that I must change my underpants due to incontinence so I stop to get dressed for the night.
9:30pm - 10:15pm - Strap on The Vest for physical therapy to help loosen mucus in my lungs. The session stops every 5 minutes to allow me to cough and spit the loosened mucus.
10:15pm - 10:45pm - inhale Tobi antibiotic via nebulizer.
10:45 - eat a quick snack, take bedtime pills (4 total) and brush teeth.
11:00pm - go to bed.
3:00am - coughing attack wakes me.
