So I try to go back to bed, but most days I have to work, or go to school, or have church. I muster the strength to get myself there and to participate. I serve at Olive Garden, which is a physically demanding job, requiring me to be on my feet and attentive to guests at all times. I usually only have about 1-2 minutes at any given time to catch my breath before someone needs something else. At school, I try to actually learn something and participate in class. It's hard keeping up with 4 classes at once, especially all of the homework they require. And at Mass, of course I try to participate and pray, sing, and listen. But sometimes, it's just so hard.
I'm supposed to check my blood sugars before every meal, take insulin if they're high, count the amount of carbs in the food I'm eating, take my medicine for my food, and then have an appetite that can help me gain and sustain a healthy amount of weight. But tell me, when you hear that dinner is ready, what's the first thing on your mind? Checking your blood sugars? Counting how much food you're going to eat? Or is it just eating?? Right. So honestly, I rarely do these things. It's so hard to remember, and when I do, it takes a while to do it all and I get hungry, dangit. I want to eat before my food gets cold.
Even though I'm working all day, or am at school or doing other things that a normal 20-year-old guy does, I have to do another treatment right in the middle of the day. It's only 1/2 hour, sure, but finding the time, and again the energy, to fit in that 1/2 hour is sometimes impossible. Then, before I go to bed after a long day of being on my feet, or participating in class, or playing sports or volunteering as a coach, I have to do another treatment. Then I have to set up tube feedings that help me gain weight. It's not that hard or time consuming to set them up, but it's just another thing to do. And not only do I have to set them up, because that'd be too easy; I have to swallow 7+ pills when I do them and do insulin (oh, yeah, and I have to check my blood sugars before bed, too). This doesn't include the various antibiotics, vitamins, and other CF medicines that I need to just maintain a normal level of health, let alone an excellent or superior level of health.
I just want my vacation. But there's just one problem.
It doesn't exist.
I will never be able to take my mind off of CF. There is no such thing as a vacation from it. I can never take a break or slow down and focus on other things. There's a chance it might not be cured in my lifetime. I always have to worry about cystic fibrosis.
But the hospital is the closest thing I get to a vacation from CF.
The hospital, oddly enough, is the place where it feels I have to worry about my CF the least. When I go into the hospital, I'm obviously sicker than normal and it's not a good thing, but I do always get a little excited when I hear I'm going to be admitted. Although there is never a good time to go in, I never really mind having to go into the hospital for a week or two. It means a break!!
Think about it: the nurses take care of me. They come in and give me my medicine, they hook up my antibiotics, they set up my feedings and set a schedule for my treatments, and my only job is to get better. I don't have a strict schedule to adhere to; I don't have to go to work, spend all day on my feet worrying about others, wake up at a certain time to make it to class, do homework, schedule baseball games and practices, or go to any appointments. I don't need to set my alarms to wake up and do a treatment or to take medicine. I don't have to worry about taking my meds because when I need to, they'll be conveniently placed in a cup and set on my table in front of me, with a glass of water I don't even need to get myself. My mind is allowed to go numb. I'm allowed to relax, finally, and not think about my lungs.
Sometimes this mindset can be bad, because I can get a little lazy after the hospital. I expect others to help and I feel as if it's not my responsibility. I find that sometimes I don't always put in the effort I need because I know that if I get sick someone else will take care of me.
I also can lose my patience in the hospital easily because if I have the mindset of being on vacation, I don't want to be bothered. Of course, nurses and doctors are constantly in and out of my room, so I feel like I never get alone time. I'm not in the hospital to get alone time, though, I'm in to get better. While it's nice not to have to worry about CF here, I do have to let others take care of me because there really is no such thing as a vacation from CF.
Cystic fibrosis takes a toll on its victims. There truly is no break. There truly is no vacation. The disease doesn't turn off when we go to sleep, it doesn't let up when you are on a holiday break, it doesn't care if you have major events coming up. CF is constant. But when I'm in the hospital, even though I'm in for CF, I finally have a chance to just watch TV, play card games, go on walks, and take a mini vacation from the disease I can't imagine living without.
