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.

20120709-143942.jpg

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.

20120709-143950.jpg

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:

20120709-144006.jpg

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”

20120709-144014.jpg

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.

20120709-143957.jpg

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.

4 Responses to “34- back in hospital”

  1. ziaboga Says:

    hi Dani , today I’m going to write in spanish.You understand it perfectly.me gusta mucho que vuelvas a escribir y seguir contando tu historia.me han encantado las imágenes que has puesto.Pero lo que mas me ha gustado leer ha sido que continuarás luchando.Has recorrido un gran camino y aunque a veces te den ganas de abandonar, sigues luchando.Eres una persona que transmite muchas emociones y que tus palabras ayudan a entender lo duro de la CF.Ya se que mucha gente no entiende nada, simplemente porque tu aspecto es a veces bueno y sonríes, creen que no estás tan enferma.Sin embargo yo que tengo Cf se lo que estás sufriendo con solo 25 años y yo soy un afortunado con 49 años por estar como estoy.Pero creeme que te comprendo y que en esta enfermedad hoy puedo estar bien y mañana en el hospital con oxígeno.Es una enfermedad que en cada persona es diferente, y eso la gente no lo comprende.
    Es muy dificil llevar la enfermedad con todo lo que tu estás sufriendo por lo que tiene más valor.Solo deseo como tu que consigas el transplante y puedas disfrutar de todas esas cosas que cuentas y que todas las personas pueden hacer.Mientras ese momento llega, sigue luchando mientras tengas fuerzas y ganas, que yo estaré para apoyarte decidas lo que decidas.Ojalá fuera médico y pudiera curarte pero solo soy una persona con Cf que sigue con admiración tu día a día.un fuerte abrazo de tu amigo.👍

  2. donna Says:

    dont give up and keep your fighting spirit going. doctors dont know everything OBVIOUSLY bec u r still alive. Now, you need to focus on getting well so you can get those lungs. You are always in my thoughts and prayers. I ask GOD all the time to help my cf friends and watch over them and you are one of them. ((hugs)) Dani. Please hang in there. Life is not over for you. Keep fighting girl,


  3. Keep that positive thought……keep smiling that beautiful smile…..miracles do happen !! hugs & love +++++prayers

  4. Genevieve Says:

    Wow do I understand. If I had a dime for everytime someone said to me “but you don’t really look sick?” that is until they hear me cough or gag up mucus. But for the most part, not many people understand. Unless you have ever had trouble breathing, people seem oblivious like they can’t empathize. It really makes me mad as well. I have felt exactly like this where I could just punch them square in the face. It hard sometimes also, because I have a toddler and want to do so much more with her and I have to pace myself. I want to work again but doubt I ever will outside the home. So I paint. I would love to paint you something. Please see my website link on my twitter page. I’m an accomplished Digital Artist.🙂


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: