In this post I will attempt immerse you in the sensory experience of being an MS patient.
As my favorite Youtube yogi, Adrienne says, “Take a comfortable seat of your choice.”
Let’s begin.
I have been considering telling you a story that takes you through an elaborate and bizarre scenario to illustrate the odd sensations you might have with MS. It was a bit extreme on the spectrum of oddness. The next paragraph shows a sample of what I was originally considering.
You feel tired. You are wearing heavy ankle and wrist weights that are a little too tight. As you try to stand up from the couch it takes a few tries to keep a box of plates balanced on your head while also maintaining eye contact with a spot on the floor to help your eyes stop wandering out of focus.
Instead of that, I will take you through the five senses one at a time and elaborate upon the symptoms in said category. Before starting I must quickly say that with MS nothing is A+B=C. There are so many factors at play that it’s extremely difficult to whittle down one specific “cause” for any symptom.
1. Sight
Vision changes are a signature sign of MS. My experience has taught me that if my vision changes I either need to cool my body down, get more sleep, or am having a relapse. That being said, it could also be a result of overexertion or a sign of infection. Some of the visual changes I have experienced are double vision, optic neuritis (inflammation of the optic nerve resulting in pain behind the eyes), blurry vision, difficulty switching focus from something close to something far, visual vertigo (turning your eyes to look at something and feeling like the room is moving+dizziness), sensitivity to light, and black spots.
2. Sound
I occasionally experience ringing in my ears, but thankfully it goes away. There are random times it feels like one ear isn’t picking up sound waves while the other ear still is. In general, I don’t hear as well as I used to. I frequently need to ask people to repeat what they’re saying, and sometimes with my husband I have to just repeat what he says because my brain seems to be moving slower than sound travels.
3. Smell
There are times I cannot smell things, but more often I tend to have a super sniffer. Although, if my toddler’s diaper was poopy as many times as my nose told me it was, we would be in trouble. I smell “phantom smells” that aren’t there. If I smell something that I can’t immediately identify my brain informs me that it is something random, usually an unpleasant smell like dog poop.
4. Taste
MS rarely affects my taste, but when it does things take on a bitter undertone.
5. Touch
Numbness, tingling, phantom vibration, muscle twitching, headaches, aching joints/muscles, sharp pain, throbbing pain, tightness, etc. This is one of the senses that is always being affected these days. My toes maintain partial numbness. There was one time I microwaved a rice bag to put in the foot of my bed to warm it up. It was extremely hot, but when I got in bed it felt soothing on my toes. The next day I found an angry red burn and blister on my toes.
“Our bodies have five senses: touch, smell, taste, sight, hearing. But not to be overlooked are the senses of our souls: intuition, peace, foresight, trust, empathy.”
C. JoyBell C.
We all have physical senses, but like the aforementioned quote these are not the only senses we have.
My physical sensations are sometimes strange but that has not eliminated my ability to feel peace. I experience discomfort and that has led me to have greater empathy for others. We all have distress, pain, and weakness. Do you allow these sensations to shrink your world or expand it? Will you use your difficult experiences to relate to, and better understand others?
