I guess I’ve been pretty quiet lately. There is a lot going on in my head nearly twenty-four hours a day. Sometimes I forget that I am the only audience to most of those ruminations.
Perhaps it is best that way. After all, who really wants to hear the thought processes of someone caught in the throes of emotional misery?
Yes, I once again find myself ensnared by the demon known as despair. I once heard Pastor James MacDonald rank the four “D’s” we can find ourselves in. I wrote it down somewhere. Like many things lately, though, I can’t find where I wrote it, nor can I remember what all four were. I remember depression and despair, but I can’t remember the others nor which of these two is considered worse. Regardless, it is obvious that I am not only experiencing one of these—I’ll call it despair—but also a serious case of not being able to remember much of anything. In the MS world this is referred to as cog-fog. Cognitive issues are a result of MS. There have been multiple times in the last two weeks where I have grabbed my laptop to do something, and by the time I open it and sign into the operating system, I have forgotten what it was I was going to do. The table next to my chair has become a place for little sticky notes. If I don’t write it down, I may as well consider it gone. That is, until 2:00 AM when I suddenly wake up and remember what it was I wanted to do. Then I am awake for hours trying to shut off my brain. It is a vicious cycle.
I think I can pinpoint what started my descent into the pit this time. It came via FedEx over the weekend. It was a bittersweet delivery—one much anticipated after hours upon hours of research, yet one that brought instant tears to my eyes.
If you are familiar with MS at all, you know that for many people, heat is arch enemy #1. Think kryptonite with Superman. That, for me, is heat with MS. It paralyzes me and renders me useless. It sucks just about every ounce of life out of me. It also keeps me inside our air conditioned townhome. I wish I had kept track of how often I have sent a prayer of thanks heavenward for air conditioning. I may not actually be able to count that high. Most people hate winter because they are stuck inside, unable to enjoy nature. I hate summer for the same reason. I can get out in the winter, take a walk and enjoy the fresh air and beauty of the snow. But summer is a different story. Summer heat and humidity is evil to my body. A walk to our garage in any type of heat and humidity instantly makes me dizzy and weak and overheated. And once overheated, it takes a LONG time for my body to cool down. Because of the issues people with MS often face with the onset of heat, there are several styles of cooling vests out there. These are not cheap! Even the lowest end vests are priced over $200.
This year, my husband decided it didn’t matter how much it costs. Insurance would cover it most likely so he told me to start researching which one would work for me. I spent hours on several MS websites, looking at all the pros and cons and personal reviews of the cooling vests that fell in the price range our insurance would pay. I finally settled on one that got good reviews for quickly cooling the skin as well as being somewhat portable. I filled out the necessary information and clicked “Order”. Over the weekend, this was the box that FedEx delivered to our door.
Now, I should be excited, right? This is something I had only dreamed I could have. This was something that promised more mobility in the hot and humid summers. I was excited. I opened the box with anticipation, pulling out the vest, the many cooling packs that would be inserted into the pockets on the vest, the neck cooler and gel packs for that, the wrist coolers and gel packs for that, and the instructions on how to make this vest work for me. I put the vest on to check for fit.
And then I cried.
I cried because I already struggle with how I look. Eight months of walking with a cane and being unable to exercise took its toll on my weight. I hate myself right now because all the weight I worked so hard to lose a little over a year ago is all back on my body. As I looked at the figure in the mirror, sporting what looks like a park ranger vest, the tears were unstoppable.
I cried because I need the vest at all. I know what heat does to me. I know my family is tired of hearing me complain about it. I know that if I could even go for a walk each day I would probably feel better and maybe even lose some of the weight that makes me hate myself. Still, I wish I didn’t have to need this cooling vest to do that. Ten years ago I was coaching youth soccer, running on the field with my team. It didn’t matter if it was hot outside. Now, a simple walk down a path in the sun renders me nearly lifeless.
I cried because of the burden this disease has put on my husband. Our electric bill is higher than it would have been had MS not taken up residence in my body. Our air conditioning is set to a very low temperature. Even with that setting, our upstairs stays too warm for me to always get a good nights’ sleep. I run a large, powerful fan every night to try to keep me cool. More draw on the electric. Cooking dinner is nearly impossible in the summer. Standing over a hot stove or turning on the oven just heats up the house (and me). My husband works hard and deserves good meals when he is not traveling (which isn’t often this year unfortunately). I hate that I am often unable to give that to him and that we eat out so much.
I cried because, once again, I realized how much of a burden my illness is to the people I love. Even though I am thankful that there is such things as a cooling vest that may give me back some of my life in the summer, I cried because I wish I didn’t have to have it.
I have found that Psalm 6:6 plays in my head a lot: “I am weary with my moaning; every night I flood my bed with tears; I drench my couch with weeping.” In the midst of all the tears, I know God is here. He sees. He cares. He weeps with me. He gives me the strength to face each day. He has to be strengthening me, for in my own strength, I would have given up by now.