Days like today I get scared. Days like today I get a glimpse into what my future holds. Days like today I think CF wins a bit
It is 2:30pm. I woke up at 11:30am after 11 hours of sleep. I was still tired, still wanted to sleep, but I knew I had things to do. Like clean and laundry. At 2:30 I am 2 loads into 4 loads of laundry and done cleaning. Not the good tear-the-house-apart-scrubbing-everything kind of cleaning. Just your basic dust the tables, wipe down counters and vacuum cleaning. Then I showered. Now I sit panting, gasping for breath, with a high (122) heart rate but decent O2 (94). Pain in my lungs and back. A desire to lay down and sleep the rest of the day. And a low grade fever (99.1).
All my spoons have been spent.
I have about 2 days like this a week. Sometimes more, sometimes less, but on average 2. Admittedly that is fairly good for a 30 year old with CF. Especially one on SSDI and +/-40% lung function.
I dread the day when those 2 days become 4, then 6, then everyday. This feeling is no fun. It's horrible and I don't know how people do it.