My Mom came to stay with me on March 14th. She is my caregiver and it made more sense as the state was shutting down for her to stay here with me and Sean. I saw a post a while back about the fact that people with MS’s lives have not changed very much with the, “Stay at Home” orders. I told my Mom that my life hasn’t really changed because I have pretty much stayed in the house except for once a month to get my eyebrows waxed and my hair cut.
Sean and my Mom are here all the time so that is one thing that’s different but I I’m still living the same life. Almost, somewhat unaffected. Because it only recently it’s getting warmer, I still sit in my house in the hoodie and often times in winter hat because I no longer can control my body temperature. My central air broke the summer before my last year teaching. Once it was broken, my brother, Dave, bought me two window air conditioners. One for my room and one for Sean‘s room. When he bought them, it was the middle of the summer and I had to figure out how to save enough money on a teacher salary to get my central air fixed.
I knew that would cost me somewhere in the thousands. I did not have that kind of money in savings that summer so I needed to think deeply about my options. I never would have thought that the following October, I would get seriously injured and would need surgery. Recovering from that surgery has been very long and difficult and is still not complete. Now, I am on disability. Being on disability does none of war do you the luxury of getting your central air fixed because you don’t make that much money.
Shamefully, I am still rocking my window air conditioners like it’s in the late 1980s:
I was still wearing hoodies and often times a winter hat because it was just a little bit chilly and I couldn’t get warm. That is, until last Saturday night. The scene of my first COVID-19 tears. My Mom had told me probably last Thursday then the window air conditioners would need to be put into my bedroom window and Sean‘s bedroom window because it was beginning to get warmer. Saturday, as I watched TV, I had to take my winter hat off because I felt warm. I also took my hoodir off close to me getting ready for bed.
My heat intolerance came over me so fast that all I could do was try to remain perfectly still to conserve my energy. I got ready for bed, and as I brushed my teeth, I could not stop or control the silent tears streaming down my face. As I wiped them off my cheeks with my hand, I try to keep my mouth from twisting. Sean always says that my mouth gets crazy when I am trying to hold my tears in. It was crazy on Saturday!
I had just written about me being very particular about my covers and the fact that I love my covers pulled up to my chin when I slept. It was so warm in my house that I could not even think about having my heavy comforter on. Instead, Sean lifted me up and put me onto my bed as tears continued to stream out of my eyes and down my face.
My Mom asked me if I just wanted a sheet on as I slept and I nodded silently. Sean had a box fan on in his room because that is where he and the dog sleep. I do not have a door in the doorway of my room because the doorway has been widened to accommodate my wheelchair so I could feel the fan blowing on my skin and my skin is so sensitive to sensations that I had to pull the blanket between my sheet and my comforter on me as well to keep the wind off of my skin.
I was so miserable but I ended up eventually falling asleep. When I awoke in the morning, Sean and my Mom put my air conditioner in my window and I was able to have it on Sunday night. When I woke up this morning, I was freezing so I turned my heat back on and I am sporting a hoodie and I wear a hat some of the time. I really wish that I could control my body temperature! And I wish I wasn’t so heat intolerant! Hence, my first COVID-19 tears.
