Even on days when I'm feeling (relatively) well there are always little (and sometimes big) reminders of my illness.
For starters, I wake up and cough. And I don't mean clear my throat... I mean COUGH - braced and hunching over until I'm red in the face, gasping for breath cough. This happens whenever I wake up, so if I stir in the night, it happens. I'll be up for 5 or 10 minutes just coughing so I can be clear enough to lay back down. Another 10 minutes to fall asleep, if I'm lucky.
When I get up in the morning, the first thing I do (after going to the bathroom and grabbing a soda) are my breathing treatments. This consists of aerosolized medications and a vest treatment - the vest shakes my chest to help loosen the congestion so I can cough it up. This takes anywhere from an hour to two hours - and can be exhausting if I'm really congested.
Then I can start my day.
Get food (Need those calories to maintain my weight - coughing burns a LOT of calories). Did I mention I wear oxygen? I didn't. Ok - I wear oxygen. I don't notice it so much when I'm sitting in one place, but when I begin to move around the house, the tubing leash I have trailing me can get caught, stepped on or run out. Making food in the kitchen is a hassle, because it reaches just to the refrigerator, but not the stove, cutting board, dishwasher or sink... convenient when I don't want to clear my dishes, but not so much when I'm alone. Off comes the oxygen.
After eating, I pop pills and shoot up. No, seriously. I take about 15 different pills every day... many of them multiple times a day. I won't list them all, so you'll have to just trust me on this. I also have CF related Diabetes for which I take insulin shots whenever I eat. These two things are probably the easiest part of my health maintenance, and I'm really looking forward to a day when that's ALL I'll have to do.
One difficult part about CF is that because I need so many calories, I'm often eating a large volume in one sitting, which makes it difficult to breathe. With the stomach pressing against the diaphragm and lungs, I end up having to cough and clear after meals. Which is okay if I plan to be near a trash can or toilet. Yeah, sometimes I cough until I barf. Although that has happened a lot less since I had my gall bladder (which would swell after eating) removed.
Before I get myself ready to leave the house, I have to make sure I fill up my portable oxygen device an hour before I plan to need it. It has to build up pressure to be able to function properly, and if I'm unable to use it, my blood oxygen saturation will drop and that causes the heart to work too hard (and the last thing I need is a heart transplant, too!).
When I leave the house, it's usually time to give another good cough. I often purposely cough when I'm driving places so I won't have to when I get where I'm going. One of the hardest things for me to deal with is coughing in public. I hate to gross people out or worry them. People think I'm choking and get really alarmed when I have a coughing fit. I find myself giving the dorky thumbs-up just to get them to leave me alone until I catch my breath. I hate having to justify it afterward, "Oh yeah, that's normal for me. And it's not contagious."
When I'm home during the day, a lot of times I take a nap, which for me symbolizes starting my day over: I get up, cough, and do a breathing treatment. The added exertion from coughing and struggling to oxygenate my blood often wears me out in just a few hours out of the house and I need naps!
Before bed, it's the same routine as the morning: breathing treatments, vest and bedtime snack (food).
I share this, hoping that more people will understand when someone says, "I have Cystic Fibrosis". It's not just a label, it's a lifestyle.