When people find out I am living with Multiple Sclerosis, there is always a lull in the conversation. What do you say to that? People usually respond one of two ways: They either offer their condolences, or tell me, “I would have never guessed” and that is the double-edged sword of the situation. Because while I may appear normal on the outside, internally it is a whole different story.
Multiple Sclerosis is an autoimmune disease that affects the myelin sheath surrounding the nerves of the central nervous system. Think of the myelin sheath as the conductive material surrounding a wire — once this is damaged, the wire might work, but not always well. This disease can affect any part of the central nervous system, but my personal experience has been limited to my brain. I have had MS since I was about 17 years old, and while I think I have a pretty good handle on it, it is definitely not without its challenges.
When I am in a flare, I usually cannot use the left side of my body. My legs, arms, and face will not work at all. I can get around relatively well using the right side, but I occasionally need to take advantage of assistive devices such as a walker or a cane. Of course, they are both purple — I had to make sure they were pretty.
Occasionally, I must be admitted to the hospital and receive high doses of steroids over the course of three to five days if the flare is bad enough. When this happens, it takes weeks- sometimes months to be back to “normal”. My doctors have described it as a “semi hitting my nervous system”, so it understandably takes some time to rebuild those neural pathways. Then there are the daily challenges. Brain fog, fatigue, nerve pain and aphasia are my biggest struggles.
For a long time, I really struggled with my diagnosis and tried to ignore it. I tried to live my life as if nothing had happened, and I paid the price for it. I have always been a go-getter, and it was a challenge for me to slow down and really take my health into consideration. I am older and wiser now, and I try to listen to my body as much as I can. I have learned there is a fine line between not letting the disease own you and letting your body tell you when it is time to slow down. Some days, activities “cost” more. On those days, I may have to take more breaks and really make an effort to conserve energy in any way that I can.
It can be difficult to find that perfect “middle ground.” This comes with a lot of anxiety. “Did I overdo it?” is something that constantly plays in my mind.
After reading this, you might feel inclined to feel sorry for me. This is not my intention at all. My goal with this is to spread awareness for my disease, while also helping people understand that what you see on the surface is not always the case. I also want people that are struggling with an invisible illness to know that they are not alone, and that it is okay to slow down when you need to. While my life may look different than that of a “typical” 32-year-old, it is still a beautiful life.
I have a wonderful husband who is amazing through all of my days, even the bad ones. I still get out and do all of the things I have always loved doing, like hiking and swimming.
Sure, sometimes it takes away my ability to walk, but it will never take away my joy.
Baily Terry is the audience development manager for Tallapoosa Publishers Inc. She can be reached at baily.terry@alexcityoutlook.com.
