I get me,so why doesn't anyone else? I used to think that at one time or another we all have experienced just about everything under the sun, that there is no unique experience. Now I have changed my view. While we all do have many shared emotions and experiences, no one who has not experienced MS can know what it is like to have MS.
Lately I feel like no one gets me except other people with MS. I know that people mean well but I am getting tired of people telling me all the things I "need" to do. I am also tired of the looks I get when I say certain things. For example, if I say, "I don't care what others think," whoever I tell that to acts like I'm a bitch for saying that. The thing is that I don't mean that statement in a bitchy way. I just mean, "It's all right now, I learned my lesson well, you can't please everyone, you've got to please yourself." It's not me being depressed,it's not me blowing other people off, it's just me recognizing that I need to draw boundaries and change my life.
My husband expressed distress about the fact that I kept saying that I was "myself plus 10% now" because he said it makes it sound like I am asymptomatic so I have been making an effortto let people know that even though I seem ok, I'm often not. I have been telling folks that I am afraid to fall asleep. I explain the symptoms I feel when I am tired but I can sense that when I am through, people wish I had not addressed this issue so matter-of-factly. I think they do not appreciate my honesty. I actually have gotten the sense that rather than addressing this with me,my friends are discussing me behind my back. You might say, "Well, you just said you don't care whatpeople think so why do you care?" I say, "I don't but real friends should say this to my face."
I am also sick of the whole, "Are you seeing a therapist?" bit. I am guilty of doing this to friends and even my husband but I am sick of everyone telling me that I can't deal with this big change unless I get therapy. Well trust me, if I think I need therapy, I'll go. Sorry for the rant...