With summer comes going out more. Its time to get out of the house and go out with friends, either to rooftop bars, concerts, street fairs, or just riding a bike along the lake. I love it. However, with having more plans means there are chances that I cancel plans last minute due to not feeling well.
This is especially hard because I want to be "normal" and hang out with friends like everyone else but when you just don't feel good its hard. I am certain that my friends understand but at the same time, I don't blame them for questioning how I was able to go out yesterday and then today I am laying in bed and don't want to move. Unfortunately, even with CF hour by hour changes. When having a coughing attack or spasm I feel horrible and will do anything to make it stop. I just want to be home in bed or hooked up to my Vest and getting a neb to try and get it under control. An hour or later when it stops, I might feel great and "I'm ready to parrrrtyyy" (Bridesmaid Quote) When my lungs hurt and I can feel every breath in and out, it occupies my mind and all I want is for it to go away.
I know that everyone has ailments and despite them we all pick ourselves up and go out sometimes, or stick with our plans but it becomes a challenge when it happens multiple times week.
Its hard not to feel like the boy who cried wolf because I feel like I use "I don't feel good" all the time. In fact, one time a friend was having a party and I wasn't feeling well, but hoped laying down would help. NO, I ended up getting sick and coughing up blood. I texted him letting him know I wasn't going to make it out that night. His response was OK but I felt like he thought I was brushing him off. I wanted to let him know I wasn't. I sent a picture of the blood to him and said I swear I'm not lying. Haha I forgot how gross blood can be to others. He responded that he believed me and not to send evidence again. Oops hope I didn't scare him for life.
Unfortunately, things have been getting worse and almost every night I get sick now. My poor roommates hear me up coughing in the middle of the night, and most of my friends know that I don't sleep much. I am up at all hours from coughing. Honestly, the best sleep is during the day when I nap because I am so tired I just pass out. It is so hard. My body should need extra rest because it is working so hard but at the same time, because I'm constantly coughing, it stays awake and I can't get rest.
I could be doing so much better, I think. I am slacking in school, but its hard to get up and read chapters or make case briefs when you were up all night feeling sick. Eventually, I will get up and do a little work but then I am so tired that I have to nap and thats when the endless cycle begins.
*Medical Update*
Earlier in June, I was back in the hospital due to the blood, fever ect. the doctors decided to try another pulmonary arterial embolization ( where they go into my lungs and try to burn the blood vessels to stop the bleeding). I have been through a few of these procedures before, and unfortunately they only work for so long before the blood comes back. This time however, the procedure failed and did not work at all. When the doctors got in there, they said they were unable to find the source of the blood and were unable to stop it. As far as the bleeding and pain goes, they just said I have to "deal with it". My frustration comes in because I don't know when enough is enough. How much do I have to go through before I need to come back to the hospital? Yesterday I stayed at my parents and around 12:30 right after I got home and laid in bed I felt it coming on. Sure enough I coughed and the next 20 mins are history. I tried not to wake my parents but when your daughter is coughing and renching blood in the bathroom sink next to your bedroom, how do you not hear that, and not respond? I washed the sink out, went back to my bedroom and it continued. I used Kleenex, sat on my bed and just cried. When is it enough? Moments later, my dad walks in, sees the pile of bloody Kleenex and only manages to get out "Oh God". I don't think he was prepared for how much was there. As helpless as I felt, I am sure he felt even worse. At this point there is nothing either of us can do, only comfort me as I cry from the pain, and the feeling of defeat.
In the meantime, I have to continue life. I spent the rest of the night tossing and turning, coughing , and managed to get a little more than 2 hours of sleep. Fortunately, I was able to nap this afternoon, but again that only lasted about 2 hours before my cough retuned. I know I am not the only CFer to experience this vicious cycle, and it sucks.
I got up, dressed up, and showed up to do what needs to be done.
As fantastic as it might sound to someone else, laying in bed all day is not that great. (I won't lie tho, the rainy days where you hear the thunder rumble and rain pitter patter on the roof, while curled up in blankets with a House Hunters marathon on is pretty great) I would so much rather be a productive member of society and enjoy life. However, until we figure out what to do with this blood and feeling like crap, I just have two options: suck it up and get out there, or lay in bed miserably. Sometimes the latter is necessary but I have to try option 1 if I want to feel any sense of "normalcy".
