34- back in hospital
July 9, 2012
I’m back in hospital. It’s my third day here now but I don’t feel better at all.
Last week was very hard for me. On Monday my mum even had to feed me because I was too weak.
On Tuesday, I saw my family. It was nice but I felt sick all the time. On Wednesday and Thursday I had to stay home in bed. ,pmy little brother visited me. That made me very happy but he was very shocked because I was breathing so bad😦
And on Friday I had to go to hospital in the morning. I’m throwing up all the time and have belly cramps. The inflammation in my back causes horrible pain.
I sleep a lot. I’m alone most of the time. I have a single room because I’m isolated, everybody that enters my room has to wear a mask and gloves. If I leave the room it’s the same thing. But I have only left it once yet.
I don’t feel like getting up.
I’m reading a lot. I wanted to watch tv but the program is so boring… I miss the sun.
I’m thinking very much… About random stuff. I don’t know how everything will go on so I can’t make any plans. I still hope I will get my lungs, but with a serious inflammation and infection in the body, a transplant is impossible.
Sometimes I put my hands on my ribs. I can still feel where all the tubes after my heart surgery were. It feels like holes in my ribs. It helps me to remember, what I already went through. And how much I can stand. How much I can fight.
One and a half year ago, my family was told, that I won’t wake up from my coma anymore. Even my grandparents thought I would die. But I didn’t.
The doctors are telling me prognosis, how long my body will be able to take all this. But they don’t know me. They gave up on me before. And I always came back.
During the last weeks I sometimes thought about giving up. It would be so much easier.
no pain. No meds. No hospitals. But it’s just not me… I never gave up before.
I just wish they would be able to stop the pain. It’s horrible. For a while I can distract myself or control it with my thoughts. But after a while the pain is so strong, that not even the painkillers can stop it.
I’m trying to stay in touch with my friends and family. But it’s difficult sometimes. When I’m in pain, I don’t want to answer emails or calls. Today in the morning my phone was ringing several times but I was in so much pain that I just didn’t want to pick up.
Many people don’t understand how sick I am. They tell me I can’t be that sick when I’m still looking normal. But they don’t know anything about cf. They judge me without knowing me. I saw a picture, that I really loved. I want to share it with you. Here it is:
I know many cf patients that died. Not even half of them looked very sick in their last weeks. Some of them were told that they should stop pretending. Nobody believed how sick they were. And then, when they died, everybody was shocked. How could is happen? She was always doing so good?! And I just want to punch them in their face and say: “no, she was not. You just didn’t want to see it”
I miss a normal life. I miss having a job. Going to work every morning. To have a normal day. And to go out at the weekend. To meet friends. To plan a life. I plan from one day to the next.
When I go to sleep I dont think of my work where I will meet other people in the morning. When I go to sleep, I hope that my pain and my lungs won’t wake me up every hour. And I hope that the next day won’t be that bad…
Sometimes I get up in the morning and I don’t know what to do. I just stand in my room and look around. All the things I want to do aren’t possible anymore. I want to go to college or work. I want to do sports. I want to walk outside in the sun. To go to the pool with friends.
Usually I am happy if I can move without pain and without feeling like I suffocate.
Although all this sounds like I was very sad- I’m not. I’m okay, I keep myself busy, I know how to entertain myself even when I’m alone all day. I read, I watch movies. I watch funny pictures on the Internet… I chat with others.
I also watch pictures of locations, where I want to be.
I know that many people think, that I won’t live very long. I know, that some persons already gave up on me and that some, especially in hospital, are just waiting for the day where I can’t no more.
I’m sorry guys- I won’t die. Not now. Not yet.