Venting. #CysticFibrosisProbz

Sometimes Cystic Fibrosis is really hard because people can't always look at you and "tell" that you're sick when you are. And you don't exactly want to say "I'm sick" because then that means they have to stop what they're doing, be alarmed, and take care of you. And sometimes they can't. Like at 3 in the morning when you can't breathe because there's so much mucus weighing down on your lungs and every breath just feels like you're breathing through a straw...and when that happens, a CF patient needs chest therapy...which could come in all sorts of ways. One of those ways being having someone "beat" on your back. That doesn't sound like a big deal but let me explain to you how badly it hurts. It's effective, but it hurts. You spend so much time coughing and when you cough fast, your lungs expand really fast and hit your ribs. It's almost like your lungs just punch your ribs. They're fighting each other for room. Imagine someone literally pounding on your back to loosen mucus so you can cough it up just to be able to breathe a little better. Only to feel all junky again the very same day. At 3 in the morning I can't just wake someone up and ask them to beat on my back so I can breathe...so instead I just lay here feeling helpless and frustrated, crying. No one really understands Cystic Fibrosis unless they actually have it. And you can't really get close to someone that has it. It's socially painful. Two people with CF aren't allowed to hangout because they can cross infect each other and kill each other. Plus it's really hard getting close to someone and then losing them. It happens too much. So really we have each other but it's not like we get to actually hangout. We're stuck on opposite computer and phone screens feeling this deep and emotional connection with someone we'll never be able to meet because simply shaking their hand could kill you. It's hard to open up to people about it because it's a hard thing to imagine. People think that just because a person looks fine on the outside that they're fine on the inside too but that's not true at all. My insides are screaming. I just want to be able to breathe normal. I've NEVER breathed "normal"...and I just want that so badly. I just want there to be a cure found. I don't want people worrying about me nonstop, that's not what I'm saying. I just wish I could make people understand that sometimes if the only thing I do in one day is breathe, that's okay...and that's a miracle within itself. I wish I didn't feel like such a burden on people I love and care about. I wish I didn't feel like such a nuisance. I wish I didn't get sick EVERY SINGLE WINTER and have to spend weeks in the hospital with a picc line in my arm. I wish I didn't have to feel guilty for complaining. I very seldom do. I have the right to complain every now and then.  I don't want to be felt sorry for. I want to be understood.