October 19, 2012
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.