There are many things that I am still trying to digest from my speech pathology appointment last Tuesday. But thinking about things that went on that day not related to my appointment, I am having a really difficult time processing those events. I think I will just explain them here and maybe get more clarity as I write this blog post. I hope…
I learned a while ago that I need to schedule when I am going to leave my house. It takes a lot out of me to be, “Out in the world.” it has been a really long time since I have been, “Out in the world” and a few things have reminded me of how inaccessible the world is. I am having a difficult time processing this. Or better yet, I fear that I am no longer equipped to be out in the world…
To better process this, I need to think about when I was out in the world every day. What I am noticing as my disease progresses is that my eyes are really being affected. I thought about it and back when I used to teach, which was a long time ago, I used to teach with just one of my overhead lights on. What I learned after a while is that the fluorescent lights are a little much for my eyes to handle. Being in the classroom all day long, it was easier on my eyes to have just one overhead light on. That worked out because my first two classrooms had two light switches to control the lights. My last classroom, however, only had one but there were so many problems in that classroom with temperature control that I didn’t really think about my eyes hurting because I was freezing!
Anyway, after my appointment with the speech pathologist, because we had rented a van to accommodate my motorized wheelchair, I was going to make another stop while I was, “Out in the world.” I knew that making the day a, “2fer” going to be extremely difficult but I was going to push through! I had finally had money to purchase a new TV because mine is dying and I was also able to get an iPad because my eyesight it’s failing so it’s easier for me to work on an iPad opposed to my phone. Rather than just buying them online, I wanted to have a sales person at Best Buy explain the best option for a TV for me and I wanted to get my iPad programmed.
That whole process took about three hours. It was not until I had difficulty exiting the van on the ramp and then seeing my door opened to get back inside and there were halos around the lights on my chandelier. It all made sense to me after I saw that! After I was able to get back into my house, I immediately took my contacts out and placed my hands over my eyes for probably close to 30 minutes to let my eyes calm down. You see, now, when I go out in public, and pretty much all the time when I’m in my house, I have to wear glasses in addition to my contacts. Let me explain this new development:
When all of this started happening with my eyes probably a little over a year ago, I clearly heard in my head the first doctor who told me I had MS. ”Look, you have MS, you are going to go blind, and then you are going to die.” My Mom and I recounted that story to the last three doctors I have seen this month. None of them can believe that that is how a scared, 18 old girl was told that she had MS. When we told the podiatrist about that, he looked at my Mom and asked, “That wasn’t in this hospital, was it?!” My Mom nodded and said, “The very same one.”So, five years ago, when I still taught, I could just turn off one of the overhead lights well I thought and there were some days where I would teach wearing my sunglasses. My bosses at the time did not mind and they understood because they knew of my MS diagnosis before I started working there.
Yes, there are a whole lot of fluorescent lights on in Best Buy! I cannot wear sunglasses while shopping because I need to wear glasses with a prism over my right eye in addition to wearing my contacts now. So, for the three hours that we were in Best Buy, I just had my glasses and NOT my sunglasses on. When I came home, I realized what was going on with my eyes once I saw halos around the soft lights in my chandelier. I remember when LED lights first came out and they were cheaper do use in your house but they hurt my eyes so I can’t use them.
We made follow-up appointments with the speech pathologist virtual so I can remain in my house to have them and now that I have an iPad, that will be easier. But all of this is difficult for me to process! I told my Mom as she washed my hair that, “My body is shutting down.” She told me that hers is too and that everyone is but I don’t think she understood how hard this is for me! I’m just having a difficult time…