First I want to say that I am sure your boyfriend appreciates your support and that I am sorry you need to worry about these things. It is far from easy as you think about it more and more. The best advice that I have figured out is that you can focus on what you want to an extent. I know you can't ignore the situation, but you can think about what you want to do with your boyfriend this weekend or what you did last weekend instead of what might happen down the road. I make an effort to notice when I am getting negative and try to instead think of something I want to do soon. I think about something else I have done recently that I appreciate. I look up stupid jokes to tell people and I just try to enjoy myself. There are good and bad things going on in every persons life. True some have more of one than the other. Still you get to pick what your focus is. If you are still with your boyfriend then I am sure there are plenty of good things to think about instead of the hospital and a short life. It is not fair and this might be the most annoying piece of advice you have ever herd but it helps me.
One thing I do want to add is that is it important to try and remember how this effects your boyfriends. I don't mean the pain or the fear for his health but his fear for all of this impacting you. The hardest thing for me about all of this is not the impact of the disease on me but on those I love. I have accepted that I am sick, the chronic pain, the short life, the loss of my idea of where my life would go. What I can't seem to ever be okay with is my sickness impacting my wife. What I hate most, by far, is letting my wife down. Feeling like she can't do something or have the life she wanted because I am sick. I think when you love someone you value their happiness over your own. I am sure that is why seeing your boyfriend in pain is so hard on you. It is hard when you feel like you can't help and when you think about what he has to go through. He is feeling the same things about you. It hurts him that he is not up for taking you out tonight. I bet it eats him up inside that his disease could impact your future as well. At least that is how I feel. I know it is not fair to you to be asked not to show your worry about him. You are entitled to be worried. However, I am guessing their is not many things you could do to be more kind than to show confidence in him. If he says he is fine, I would recommend you take him at his word and move on. I know you can see that he is hurting. My wife can sure tell when I am having a bad day. But when I say I am "fine", I am not so much saying that I am not hurting as much as I am saying, "I can handle it and I want to act normal right now. I don't want you worrying about me, I want to do whatever it is I want to do and I have made up my mind to do it." Again I will say that this is not fair to you or to my wife. I understand that you will probably feel guilt around some things but that is also the last thing I want my wife to feel. Sometimes we will have plans to go to a party, or shop for shoes or anything. Sometimes when it is time for us to leave my wife can see that I am hurting and asks if I am up for it. If I say I am fine and we should go, a lot of why I want to go is to give my wife the best life I can. I know that involves some sacrifice but that is a choice I am making and a choice I can feel good about at the end of the day. It helps me feel in control and feel good about myself. However, nothing will make me feel worse than letting my wife down. That is why if I say I am fine and my wife does not listen and keeps us from going, I feel terrible about myself. I feel like I am holding my wife back and a disappointment. That I am disabled and that my disability have kept my wife from being happy. I doubt that is what you feel or what my wife feels in that situation. You are feeling like you are taking care of us and care about us and don't want us to suffer. That maybe you don't even feel up for going out yourself. That you want to sacrifice too and that you are here for us. That is why it is not fair for to you to listen when we say we are "fine." I know if you do go with us you probably feel guilty for going to something that is not important to you when we are hurting and you can see it. However, if he says he is fine, it would probably hurt him much more for you to keep him from going then to go in the first place.
Sorry if this turned into a rant. It is just something that is hard on me and I think is hard for caregivers to accept. The truth of the situation is that your boyfriend is lucky to have you. The future very well could be hard. However, if you chose to, you can still enjoy the present and the future. It won't be easy but I would still like to think that my wife is happy and I know I am going to do all I can for her. If you love him, do everything you can for him and enjoy yourselves. The best things in life are still there for you to enjoy just like everyone else.
