Yesterday I received the pamphlet from the NMSS about relationships. This is a topic that I have to keep reminding myself about. I know that this is something that is happening to me. But I often forget that this is also happening to everyone I love. If it was just being sick then it would go away and not be a big deal. However, this isn’t going away. My son asked me “Mom why are you still giving yourself shots? Didn’t they make you better yet?” I tried to explain to him that the shots aren’t a way to make me better, but that they are a way of keeping me healthy, like taking a daily vitamin. He doesn’t understand that I’m not “sick”. Poor kid.
I have also found that I deflect people’s questions about it. I don’t do it on purpose and most of the time I don’t even realize that I did it at all. Last night my brother called and asked “How are you feeling?” And for some crazy reason I got angry and defensive. (apparently I’m still cranky) I responded with “I’m still here and not blind yet.” There was a little bit of silence after that. I feel bad and probably owe him an e-mail. But for some reason, my head went straight to “Do you even know that I’m still having problems?”. And then I started wondering if he was only asking me b/c he felt like it was his obligation to ask. Since that was not the reason for his call. Although I do console myself with the fact that I could think of all of that in the split second that I had to respond.
I’m really just not a fan of being the one with a problem. I don’t want to be asked all the time how are you feeling. I don’t want to be viewed as being weak, or not being able to do all the same things that everyone else can do. I realize that there have been and will be times when this is unavoidable. However, I really do see myself as the person that even in a wheel chair; I would be cracking jokes and living life.
Wow now I have really rambled off topic. What I guess I am really trying to say is that I am having a hard time remembering that it is not all about me. The news of someone having MS affects everyone that that person interacts with. A lot of people are scared and angry just like me. When I brush off their concerns and make jokes, it’s really b/c I don’t want them to worry about me. Of course I realize that they are worrying about my anyway. I just have to remember to try to keep the lines of communication open. I don’t want anyone to think that it’s not ok to talk to me about it. Maybe they will come out with another brochure that tells you how to do that. 🙂