3 – About my hubby
April 4, 2012
Today my situation is the same as yesterday. After a sleepless night i have been tired all day, the pain was like before.
Some friends and my mum visited me. We talked about her knowing, that her kid will die before she will . It is always hard for me to see her cry. I try to take her fear away, but of course my tries are not successful. The worst thing of this disease for me is, to know how sad and worried my family is about me. And of course my boyfriend Luis. When he came to Germany in December to see me, I was in such a bad shape as he had never seen it before. The hard breathing, the blood-vomiting, the pain, being that powerless- he knew all that but he never saw and experienced it like that. He was always there for me and handled the situation so great. But it was hard for him anyways. He spent days and weeks with me in the hospital, he went there in the early morning and stayed till late in the evening. He barely had time for himself. Everything was about me. I tried to be there for him, to give him a massage when his back hurt because of the uncomfortable hospital-chairs. I felt bad because I couldn’t give him as much love as he gave me. After a while he made it possible for me to leave hospital although I was not able to move. He carried me to the bathroom, He washed me, he cooked for me, brought me all the things I needed to bed, helped me to change clothes. I was not able to do anything on my own and he helped me around the clock. It hurt me to know, that I can’t give him anything back and be there for him like he was there for me. I was so incredibly thankful. Although I was sure before, that he was the man of my life, I loved him more and more each day.
Finally the day of saying goodbye was there and Luis had to go back to America. It was hard for him to leave me here like this, so helpless and alone. He knew I could hardly move because of all the pain. When he was back in the USA we talked on the phone every day and sent messages around the clock. I got worse and had to go back to the hospital on intensive care unit. I can only imagine how hard it must be for him: he is 5000 miles away, his girl is in the hospital. Every time we talk he only gets to hear how bad I feel and how cruel the pain is, and although he wants to help me so bad, there is nothing he could do. I want to talk to him around the clock because I feel so lonely, sometimes I barely give him time for himself. I don’t do it on purpose. Is just that I miss him so much. Unfortunately this makes the situation worse for him. I think, nobody can imagine what he is going through. He knows that his girl suffers of a deadly disease and she is getting worst. But there is nothing he can do for her but anyways I always ask him to be there for me and to help me. Very often I expect too much of him instead of being there for him. But I know that he has to stand a lot of psychological pressure at the moment because he knows that I could die of CF while he is sitting 5000 miles away and can’t do anything. I cry into the phone and complain about my pain- and he feels helpless and can’t do anything.
I think he deserves lots of respect for all the things that he is doing for me. It must be hard to have such a sick wife, especially when you are so far away and unable to help. Many men would run away. Many would look for an easier relationship. Luis always stayed by my side. He cleaned my butt and gave me a hug full of love while I was feeling so embarrassed and ashamed. He was always there for me, even when he was down himself. I know that I don’t treat him perfectly all the time, because I’m at my limits too sometimes. But I hope, that one day I can be there for him like that, too. I love him more than anything and I’m do thankful for everything. Not every man would do that for his girl. I think he deserves all our respect.
Luis, I love you so much, thank you for all the things you do for me. You give me strength, hope and power. You make my life perfect. Thank you for walking this path with me, even when I need so much attention at the moment and bother you sometimes. I will try to change that. Promise!!!
I am not on the waiting list for a transplant right now because my shape is not good enough yet and there are some problems, that disqualify me for a transplant. My next review to get back on the list was supposed to be on April 19th. Today I just received a message, that they already decided not to put me back on the list till July. At the same time the doctors tell me that we have to hurry to get to the lungs.
At the moment I’m very down and I’m not sure how to deal with this decision. I won’t give up and try my best to move on but today it’s very hard.