MS, You're Weird
Last updated: March 2023
Describing MS to someone who doesn't have the disease is a feat. Explaining the pathology is usually a non-starter, and using metaphors can become imprecise and confusing. When I try to explain my life with this disease, I try to find scenarios and feelings commonly known, like being drunk, the day after pulling an all-nighter, or how your legs will feel after running up several floors of stairs. It's not the same, but close enough for people to get a general idea. But sometimes, there are just no words or metaphors that could paint a fair picture.
When MS is just plain weird
MS is many things, all the way from funny to downright excruciating. But some of it falls in between. I'm talking about the weirdness of the disease. Weird is hard to explain and even harder to predict, and isn't this nor that; it's just weird.
Some strange MS symptoms
Here are a few examples of how MS makes my life weird:
- Sometimes, my eyes blur, and I get a ringing in my right ear. A sensation of a magnetic field "scanning" my brain from right to left follows. It's over in a few seconds.
- My leg feels like it will give out if I get tiny droplets of cold water on my feet.
- I can stop a leg twitch from happening if I scratch a specific part of my foot in time.
- Swedish is my first language, but I'm bilingual. When I'm experiencing speech issues due to cog fog (forgotten words, some issues putting sentences together), I can switch languages from that I'm speaking or writing and instantly translate to jog my brain back into remembering words.
- Being completely relaxed can worsen my spasticity.
Not unpleasant, just odd
These are just some weird symptoms that can pop up here and there. They're not unpleasant per se, and they don't significantly impact my life. MS or no MS, everyone has something strange about their body, and I wouldn't be too upset if these symptoms stay forever.
When I'm asked, "How are you?"
Symptoms that I describe here are still somewhat easy to explain to people. I can laugh about them, and I'm okay with people noticing them. But there is another type of weird to this disease that I can't as easily shake off and is more of the abstract kind.
It comes to light when asked the somewhat dreaded question:
"How are you today?"
I don't know how I'm feeling
Out of all the pleasantries we have in social interactions, this question is always tricky for me to answer. Most days, I don't know how I'm feeling other than (you guessed it) weird. In the many ways MS can affect the body and mind, I question how my daily form is affected by MS and what is simply human. Some mornings I wake up and wonder if the heaviness I feel in my brain is because of poor sleep quality or if I will be dealing with cog fog that day. My legs could be a bit stiffer: is it fatigue or because I took a longer than usual walk yesterday? The longer I live with this disease, the harder it is to differentiate the way my body feels and what it is responding to.
Most days, however, it's not even a matter of symptoms and sensations but rather the feeling of an internal unevenness. I have spent the last six years trying to explain it more eloquently, but I have yet to form a good understanding of the feeling. See how MS is just a plain ol' weirdo?
MS is unpredictable
Now, maybe I'm spending too much time analyzing and trying to predict the way this unpredictable disease will affect my next hour, week, or month. At the end of the day, I have little control over how my body will act and respond. I could be very stressed one day and wake up the next feeling great. But I could also have a pleasant and relaxing time one day and wake up feeling like I spent last night drinking heavily, and although there is some predictability, there is little regularity. Maybe I will learn in time, but things will most likely continue to be weird until then.
It's not easy to explain how we're feeling
So, when I'm asked, "How are you?" I say, "I'm fine. How are you?" the same way most people do. Not necessarily because people mean it every time, but because it's polite. And maybe knowing how we're feeling is not as easy as a one-sentence reflection. The complexities far outnumber the facts, and I think that's always been true, even before I was diagnosed. But for now, my most honest answer to the question will be, "I'm weird. How are you?"
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