I’m not sure why yesterday was the day that it would stink to have MS for me, but it did. It wasn’t like it was a record high or anything but my body reacted to it. I noticed something was going on as I was writing a note for the sub. I needed to leave work early to take my son to the orthodontist. (Sorry Sean, not time for braces yet). As I wrote Mr. McKay a note, I found it a little difficult to form the letters on paper of the words that I was thinking. Sean had his appointment in Livonia so I was just going to take him to Barwis with me. I think it was getting to the car after the orthodontist appointment that things REALLY started to happen to me.
We get to Barwis and I pull in to the back (AGAIN – WEIRD! – This time right at the door like Phil told me to). It was warm, so I knew we had to move quickly. I was unable to transfer out of my car and get in to my chair fast enough so I ended up on the ground beside my car. I told Sean to get Adam. Eric came out and picked me up. I thanked him and had Sean roll me in (I was a bit embarrassed). As I was waiting for my time to start, I started noticing that my muscles were getting a little bit away from me and when I gave Sean a directive, the words did not come out of my mouth correctly. OH NO!
I think it must have been about 2 or 3 years ago in the spring the first time that this happened to me. It was during school. My speech was COMPLETELY messed up! It scared other people more than it scared me because I still could think clearly, it just didn’t come out of my mouth correctly. That time, it lasted for maybe a week. It wasn’t SUPER warm then either. The same friend who told me that MS is NOT a death sentence, also told me that MS is a mean disease. As this disease has progressed in me, I am learning just how mean it is. The answer is EXTREMELY!!! I remember telling Phil as he was stretching me once, “that MS is more than just NOT being able to walk. It’s a mean disease.” I was referring to something different at that time but yesterday, I was reminded how mean it is (in different ways). The coping mechanism that I have for this particular “meanness” is to try not to speak (almost an IMPOSSIBLE feat for me!!!) or to speak very slowly.
Phil comes over and asked me what is wrong and I shook my head and smiled. He asked Sean what was wrong with me and Sean explained to him what was going on with me. Phil just looked at me and told me that, “that must be hard for you!” I nodded and smiled. After the stretch, he had me stand but with the heat, that wasn’t happening. He directed me to go to the table. I was disheartened, but I kind of knew that it was going to be a rough day. I turn and roll down the ramp (silently of course) but I was stopped part way down. Phil started laughing hysterically and said that he knew that was going to happen! Phil pushed me to the table and gets me onto it. My legs were tight but as they loosened up, it was a little easier to speak. Only a little bit. As my legs were loosening up, I began to sweat. I managed to tell Phil that, “This is PAST glistening! Glistening is cute and THIS is NOT!” I also told him about a conversation that me and my Mom had where I told her, “I NEVER give up.” He replied, “Damn Straight!” Then I held up my fingers to signify a little bit and told him that, “This is close!” Referring to my speech and the tightness and the sweating.
He pushed me over to the chairs (Sean had gone outside to play basketball a while ago). He puts his fist out to me and I grab it and he pulls away from me and then grabbed my wrist with one hand and closed my hand into a fist with the other, shook it, and yelled, “Joystick!” Zakk took me out and helped me into my car. It was talking to him that I realized that he had true concern for the way I was talking. That look looked familiar. It was the same look that Phil and Eric had given me yesterday. I texted Phil that I was talking more normally on my way home. He responded, “Good!” I knew how to deal with the problems that I was having with my speech because I have dealt with it before, I wasn’t worried because I was still thinking clearly – I just was having difficulty expressing my thoughts, but no one at Barwis has seen me like this before. SORRY GUYS! I’m okay now! As I drove home, I put my AC on full blast. My ears got cold in my car but my speech gradually began to normalize. Man!, MS IS a MEAN disease!!! I’m just glad that it wasn’t a “Walking Wednesday”!!!