My MS Sensory Overload Experience
Over the course of my thirty-something years, I’ve been known to have a good time on occasion. I generally love people, love being among them, love meeting and talking with new people. I have loved parties, crowded bars, any sort of social event. I’ve craved being around others. Over the past few years though, I have started having some unexpected issues that have been putting a damper on my time with others. I now have moments where my senses get overwhelmed or overloaded. My senses seemingly can’t handle normal life at times. Sounds, light, and crowds become absolutely unbearable and it’s been a tough and unexpected issue for me.
Discovering sensory issues with MS
What’s happening to me? Other than just the blanket “I have MS” answer that seems to be a nice catch-all when I don’t fully understand some of the seemingly random and weird stuff (I really wanted to use another word that started with an “S” right there) that happens to me. I did some research and at this point I have to give a huge shout out to Matt, another writer on this site, who wrote a great article about Myoclonus I read that and was finally like “Aha! That’s it! Finally a name for the symptom!” Like many issues I’ve come across during life with MS, this was something that was never mentioned as a possible symptom when I got diagnosed.
Matt’s done a great job explaining what it is, but I want to talk about how it’s affected me. One of the big reasons I like to share my experiences is because I hope they can help others with the disease feel like they aren’t alone. I also put my life out there so folks who are suffering can share my experiences with their friends and loved ones and say, “hey, please read this, this is me, this is what I go through too”. If just one person shares my experiences and their family or friends are better able to understand what they go through, then I feel that putting myself out there, even if embarrassing at times, is all worth it.
I’ve mentioned that my senses seem to get overloaded. Noise, in particular, is a big problem for me. Now, I’m not even talking about the noise of a large crowd yet. I’m talking about my wife coming up from behind me and saying something. This is a situation that plays itself out a lot, I’m in a different room of the house, and she comes in and says something, not loudly, but in a normal conversational voice. If I am not expecting it, it will literally crumple me to the floor in tears. That’s what this disease has done to me, a big, bearded guy, reduced to a sobbing pile on the floor because his wife said hi to him and he wasn’t expecting it.
My body's reaction
Expectation is a big thing with this; if I know someone is there and there is a chance they might say something, then it’s not as big an issue. If a noise, almost any noise, happens and I’m not planning for it, it will wreak havoc on me. My legs and arms will go weak and then burn with a searing pain. I will have spasms and tremors. My vision will become bright white, and my ears will ring. It’s awful.
Think about the world and how often unexpected noises happen. They are everywhere! Some of worst moments in my life have been while being a passenger in a car with someone who has a radar detector. No matter how much I try to explain it to them, it’s hard for them to understand that their device is my own personal version of hell. Even without a device like that in the car, the unexpected stimuli of a car ride can be exceptionally unpleasant. Headlights, car horns, changes in directions, those all have some sort of effect on me. Driving problems aside, there are a lot of sudden noises we encounter every day that can be very painful to someone who suffers from this.
Sometimes expectations don’t help. For example, when leaving a movie theater, the lights come on. I know it’s going to happen, but it still hurts. After being in a particular environment for a period of time, my body becomes acclimated to it, and a sudden change will throw me out of whack. So I can be in a crowded room and if the background noise is consistent, then I’ll be ok. If the room were to suddenly get silent, I’d have the same issues I’d have if there was a much louder noise too.
Consistency and expectations
Usually, consistency and expectations are the keys for me, but sometimes I’ll be in a social situation and that doesn’t work out and everything becomes too much. All of the noises become one, sometimes even all of the light becomes one and I just see white or blurriness and I’ll have to leave. I will not always realize it at the time, but this will happen and I’ll be frustrated and think, “well, I thought everything was fine, I thought there was no change, nothing different, nothing brighter or louder.” Then I’ll remember that I caused it myself by going to the restroom. Yes, I’ve inadvertently sabotaged myself by going to urinate. I’ll leave the environment I’m acclimated to, even briefly, come back from doing my business and then not long after that, I’ll have to leave completely. Consistency is such a key thing with MS, I used to think it was just with temperatures, but it’s with all stimuli.
Speaking with others
Following a conversation with multiple people can also be an issue for me. It becomes difficult going from face to face and voice to voice. Typically, the best thing for me to do in a conversation is to look down. I may even look rude or look like I’m looking at my phone but it’s mostly so I can drown out other excessive stimuli. Even if it’s one person and I’m in a crowded place, it helps me to do that. If you were to see me and my wife talking in a crowded bar, you’d think I wasn’t paying attention to her, when in reality, I’m just focusing on her and trying to drown out everything else.
I hope I’ve illuminated some of the sensory-type issues I encounter. As I mentioned in the beginning, I have always enjoyed being in social situations, but you can see where these problems make that difficult. There are certainly times when I have to avoid people and certain events because I know I won’t be able to handle it. That leads directly to those issues of loneliness I’ve spoken about before. So what about you? Do you (or anyone you know) encounter sensory overload? If you do, how do you deal with it? Hit up the comments and share. Together, we can help each other.
Were you misdiagnosed with something else before receiving a MS diagnosis?