Wow Dale, this is such a timely post for me as well, and it is awesome how real everyone has been in their responses. Thank you. For me, my emotions about this disease are really hard to express to other people, or even admit to myself a lot. I am kind of chicken even to make this post, and I’m sure I will wince when hitting that “submit” button.
I tend to use humor when interacting with people about physical manifestations of what’s going on (haha, watch Sunny weave like a drunk and walk into the wall) because I know that these alone make people uncomfortable when they are present. However, I know that my emotions around this whole thing would really make people feel very much more uncomfortable and helpless. I also feel that showing or admitting that I am totally scared and freaked out by this whole thing would be seen as a sign of weakness, and when I have tried to open up I usually get those platitudes you all have talked about. I know I have people that love and care for me, and I think they honestly just don’t know what to say, and when they are uncomfortable, it makes me uncomfortable too.
Until recently, I was so focused on trying to save my job and just live my life that I did not deal with any of the emotions. I honestly didn’t want to know much about this disease, and I certainly didn’t want to interact with other people going through this. I kinda just tried to ignore everything as much as possible and hoped it would go away. Now I have had to resign from my job, and I have nothing but time to think…this is probably not so good.
When I had to resign, I had run myself down incredibly, and after sleeping for a few months I started to gradually feel better. Like Rhonda mentioned, I thought, hmmm, maybe all of this is over now? Or, maybe I do not have ms, or maybe the Copaxone is working? It was a really hopeful if brief time, and I thought I’d be able to resume my life to a certain degree. This last month or so, I have been pretty sick again, and am really starting to worry that I wont be able to go back to work. When I start feeling better I am on top of the world, and then I get sick again and crash and burn emotionally. Being on the third day of not leaving my apartment due to dizziness, I guess that I am in the burning phase. I constantly have to fight the feeling that my life is over….not in the sense that I am going to die anytime soon, but that I can no longer do the things I like to do, fulfill my dreams for the future, and or even do the things I really have to do, like work. I worry that I am not, and will not be able to contribute anything useful to anybody, not even myself, and that I will be dependant on my family. I do not mean this is a “poor me” way, these are just my honest thoughts….hard as they are to admit. This is all pretty new to me, and intellectually I know that I will find my way in this because I have to…now if I can just accept this emotionally…
Thank you all so much for being there! I appreciate you reading this long ramble. Exchanges like this make me realize that I am not alone in this struggle, and that it is okay to acknowledge all these feelings.