October 19, 2012

Yesterday the weather was beautiful and after we got up late, had breakfast and later lunch, we went to a cafe next to the house. We had cake, that tasted so good and of course my beloved red bull.

Afterwards Luis took me in my wheelchair to several stores, and I loved just to look at all the things they sell.

In the evening we watched some tv and did some exercise for my paralyzed leg. I went to bed around midnight and finally I had a night where the pain did not wake me up. It felt so good just to sleep. Luis woke me up several times because my nose was closed. It’s a problem for me when my nose is closed because then the oxygen tube in my nose doesn’t make much sense. I woke up very late today but I felt really really good. Luis and me had breakfast outside in the sun and afterwards I lied down on the sun lounger with my blanket. I listened to the new cd of my favorite artist with my new cool headphones. I didn’t feel any pain or breathing trouble for the first time in a long time. I felt so good. Later I went back inside to join Luis on the sofa. After a while my headache started, the breath became shorter and I felt as sick as always. I got mad at myself and the cf because in the morning I felt great. Why did it have to change??? This year was a horrible year so far. First the broken vertebras in January. Sepsis in January. Back infection from February till July. And when the infection was gone I got the stroke right away. Now that I’m recovering from the stroke, the infection comes back. Looks like I cant get a f*cking break not even for a week or a month. I’m still standing and everybody tells me how strong I am. Im not strong. I just don’t have a choice. And giving up is not an option. And my “strength” is often just a good acting performance. Sometimes I just start crying like everybody else, for example when they told me that the infection is back. I was crying like a baby. I knew immediately what consequences it will have for me. I knew right away that this infection will be my death. I was really down for several hours, but then I decided just to enjoy the time I have and not to think about the future. Maybe I’ll live longer than all those doctors expect. I won’t give up. I want to grow old.

And I want to use my time to tell people about organ donations and cystic fibrosis. But my biggest wish is, to get a little break. To have some time without pain and breathing trouble. To survive without the 30 daily pills and all the hours of therapy every day. But more important- without pain and breathing problems. Thats my dream. And I’ll never stop dreaming.



2 Responses to “Yolo”

  1. ziaboga Says:

    hola Dani me gusta verte feliz y disfrutando con luis de esos pequeños momentos donde el dolor y tu respiración te lo permiten.Se que lloras y que a veces tratas de disimular que estás mal.Es normal quien no llora con esta enfermedad.Además este año ha sido como tu dices horrible por todo lo que te ha ocurrido.Te he dicho muchas veces que pocas personas con CF han sufrido tanto como tu este último año.Pero debes pensar en positivo y como dices puede ser que los doc se equivoquen y vivas muchos años junto a tu querido luis.La medicina no es una ciencia exacta y espero se equivoquen.Espero que tus dolores y tu dificultad para respirar te den un descanso para hacer las cosas que te apetecen,No has tenido ningún descanso y te lo mereces.
    Espero poder seguir compartiendo contigo mucho tiempo estas charlas de blog twiter y facebook.Siempre te lo digo y es cierto.ME ENCANTA TU SENTIDO DEL HUMOR Y DEL BLACK HUMOR.
    Aprecio todo el trabajo que estás haciendo por la CF y que mucha gente debería colaborar.Espero podamos conseguir que toda tu lucha y esfuerzo sirva para que la gente sea más solidaria con los que por desgracia nos ha tocado vivir con la Cf.
    Lo único bueno de la CF es haber conocido una mujer tan valiente como tú y que nos ha convertido en buenos amigos.
    Espero poder seguir ayudandote a concienciar a mucha gente sobre la CF y la donación.A ver si después de este post puedes tener una temporada tranquila y disfrutando a tope de tu queriddo luis.Ánimo Dani, muchos besos y un abrazo para ese gran hombre llamado luis.

  2. donna Says:

    who is your favorite artist on your ipod? I think you are a fantastic writer and the whole time it’s as if I am sitting right there with you. That is another way you inspire me because of your writing skills. That is a great talent! Very creative. Stay strong and keep fighting and don’t stop living along with all that fighting. ((hugs)) Donna

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