I had a conversation with a good friend today and she was explaining to me how it just didn't seem like I was affected by MS. "I know I don't see you every day, but you seem like the same Dana you were before MS," she said. I think that what she really meant, was that it was hard for her to understand, because it didn't seem like I was physically dealing with anything. I did a lot of explaining about MS, and how it works. I explained that following my attack in November, there are parts of me that aren't ever going to be the same. Symptoms that I am going to continue to have, on a coming and going basis. Because my symptoms aren't necessarily painful, and because they aren't visible to others, I understood why it was so hard for those around me to really understand. I explained to her that I didn't really expect anyone to "get it." I didn't mean this in a negative way at all, I was just being honest. I said that if the tables were turned, I would feel the exact same way that she did. When I was having this talk with her, I ended up making a point that actually sort of shocked me, since I don't feel like I'm all that great at expressing myself lately. I told her that although my symptoms aren't generally painful, and I'm not scootin' around on four wheels, I am reminded of my disease each and every day. Whether it's my little pinky that's shaking uncontrollably as I write this, or parts of my face going numb, or some random muscle twitching like mad, for just a few minutes. These things are so small and they aren't typically painful, they are irritating at best. Everyday though, these invisible symptoms are my reminders. I am reminded each and every day, sometimes in very small ways, and sometimes more dramatic, that my body is ever changing. I explained to her the fears that I have had to deal with, have been one of the most difficult parts of this disease. I like to think I'm tough enough to actually deal with the physical or cognitive symptoms that may rear their ugly heads, but I fear what this would do to the people I love. Maybe I'm not yet ready to admit out loud that I fear becoming a burden on those that I love; that I'll be a source of shame, or that my life will cease to provide some greater purpose. I'm smart enough to find consoling words for myself, so I don't necessarily feel like this is something I need to hear from others. I am not so consumed with these fears that I can't see straight, but for me to deny that there are moments when I become overwhelmed by them, would be downright false. 

I am just five months shy of finding out that I have MS. This is still fresh for me, and sometimes I forget how new it really is. Although I'm not dim enough to feel like I have totally come to grips with this disease, sometimes it feels like I'm just starting over completely, back at square one. I found myself hanging out on the bathroom floor yesterday, begging whoever the hell was listening to my silent plea, to just take this away. "I don't want this anymore" was what I kept saying. How appropriate that I should hide myself away in the smallest room of the house. I feel like so much of this disease is about hiding from others how broken we sometimes really feel. I know I'm not the only one who spends unnecessary energy making sure that others don't know how shitty I really feel, and I'm talking about emotionally. And on the flip side of this, when I am spending time with others, I generally don't want to have go out of my way to let them "know" angry or sad or scared I sometimes feel. I don't want to beg people to see how "affected" I am. This surely only adds to the fact that it may seem that I haven't been changed in any way by MS. This disease has left me at times, feeling more isolated and alone than I have ever felt in my life. I don't necessarily feel like this is something that will change either, and I don't totally think that it has to. I have a community online in which I can find true understanding, and I have family and friends from which I can find true compassion, but I think there will always be moments where none of this is quite enough. I have read various crap about how we're really supposed to be our own best friend, and I sort of understand this a little better these days. There will never be someone who knows "me" better than me. Maybe these little "bathroom breakdown" moments are just part of what keeps me being "mine" and mine alone. But anyway, enough about me and my feelings. Barf.

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