Written By: Lillian C. McGregor
…always has something to laugh about. That was in a fortune cookie I got about ten years ago. Little did I know I would be using that advice later.
I was diagnosed with primary progressive multiple sclerosis (PPMS) four years ago. Just going through all those tests was an ordeal, only to find out I had the rarest form of multiple sclerosis (MS), and only one treatment to slow it down. I am letting the fates decide what will happen with my body. How was I going to deal with this disease? I went through the whole gamut of emotions from anger to pity. Since I was told I had MS for years before my diagnosis and had been happy those years, why change? As the MS changed, so did my humor, but I always remained positive.
There is a lot of humor to be found when living with PPMS! The first thing I did was take the clinical name out with friends and family. I told them the new name is Uncle Sal. Uncle Sal is that weird relative you don’t like, but always surprises you by dropping in to visit. You just tolerate him. I did get a few associates to assist me in dealing with Sal. Jack Cane, Barbara Walker, and Ruby the Rollator. Each one has been a great help. However, Uncle Sal has taken me down more than once. First with a broken arm, next a broken back. The worst thing about falling is the pain in my knees. Crawling to find a good pull up place forces me to tears and lots of cussing. Crawling + adult = knee pain! I forget about the countless black eyes until I catch myself in the mirror. I thought those people at the store were staring at my beauty! I need a seat belt for my chair. The fatigue has put me to sleep sitting up, and oops! That will wake you up!
I have had meltdowns where I run through the emotional gamut again. I will fly under the radar for a few days then realize this is not healthy for me. I don’t eat or sleep well, which makes it that much more important to snap out of it. I am in charge here. When I am fatigued, I crawl back to bed, put on old movies and enjoy a forced day off. My dirty floors will be there tomorrow. When I forget words, I just blame it on Uncle Sal, laugh and find another word. When I want to play word games on the laptop I do, it is good brain activity! I forget about Sal when I listen to oldies music. I dance in my walker like no one is watching, I really hope no one is watching! I do what mothers tell their children… eat lots of veggies and fruit, get plenty of sleep and, in my case, she also said “GO OUTSIDE and GET A DRINK FROM THE WATERHOSE!” I do try to get outside, but now I drink water from a glass!
Some things happen that I just have to laugh about. Last year, I threw a party at my house. Well, one character there loves to tell great stories. As his stories went on, he got louder and more animated. Sensory overload kicked in on me. I told my daughter I was going to my room and I spent the rest of the party there. I don’t think anyone missed me!
I try to conquer my fears. I finally faced my nemesis–steps. When I go to physical therapy, there are four steps, and I, with my cane, take the ramp. Every time I went up that ramp, those steps mocked me. Finally, one day I went down those steps. I aced it, so I went up the steps, yes! When I went down again, I let out a loud “I DID IT”. Little did I know there was a lady watching me. She must have thought I was crazy because she got in her car real fast. I don’t care, I did it. Now I mock those steps!
In Spring this year, I was living a good life when I woke up one morning to learn I was an at-risk person. Not because of MS, but because I turned 65 three months earlier. Corona arrived. The loss of jobs was my first concern. Then the cases of corona rose, along with the deaths. I could not find any positivity except the fact that doctors and scientists all over the world were on the case. I truly believe that within the next year (not days) we will be looking back on corona, and getting creative with what to do with all our masks! Wearing a mask, good idea. I get my exercise in when I walk to a building and realize my mask is in the car and I have to walk back to get it. I don’t feel the need to wear lipstick! I can mumble to myself and no one is close enough to hear me! It works great for me.
I am lucky, my family and friends are safe, so far. My heart hurts for the families that have lost someone.
Back to that fortune cookie, the advice was to live by, however those numbers were losers! So, to borrow from Monte Python…
ALWAYS LOOK ON THE BRIGHT SIDE OF LIFE.
Leave a Reply