Grappling With the Sensory Overload That Can Come With MS
Imagine this scene: There’s a rowdy crowd of nearly 40,000 people in a rugby stadium with music blaring over the Tannoy speakers. Newfound numbness spreads throughout the majority of your body, and on top of that, you can hardly see. That was the perfect myriad of factors to elicit my first episode of sensory overload.
I’ve had two major episodes since then.
When the rugby scene happened, I’d been diagnosed for a matter of months with relapsing-remitting multiple sclerosis (RRMS), and my emotions were still ablaze with this new reality. My husband, an avid rugby fan, persuaded me to go to a rugby tournament with him. I reluctantly agreed — not being a sports fan in the slightest, but stubbornly refusing to let MS dictate what I could and couldn’t do.
These days, five years down the line, my daily symptoms — like sensory changes and numbness in most of my body — have become an intrinsic part of my reality. But back then I wasn’t used to it. I was unable to wear an underwire bra because the extra pressure around my rib cage just added to the discomfort of the unusual sensation.
Looking back, I didn’t even realize the extent of what was happening. It was new. My body didn’t feel like my own. My mind couldn’t keep up with the hurricane that was ravaging my body. The constant fluctuations were overwhelming.
Add optic neuritis — a vision problem that affects about 50% of those with MS — to the mix, and I felt like I was underwater, unable to interact with the world. It was as though I were enclosed in bubble wrap.
So there I was, sitting in a loud, noisy stadium, unable to see properly and unable to feel the chair I was sitting on. The onslaught of sounds pounding my nervous system, alongside my lack of sensation and vision, sent my body into overdrive. I felt as physically isolated from the world around me as I’d been feeling emotionally since my diagnosis.
I’d had panic attacks before, which involved tears and hyperventilation. But my body’s reaction to this attack on my senses took it to a whole new level. I fled to the women’s bathroom, knocking into walls and people in my panic. I was crying without realizing that I was crying; I noticed my face was wet and wondered why. I couldn’t breathe. I collapsed on the floor without a care that it wasn’t clean.
That’s where my memory stops before it picks up again after the game ended, when we were walking to meet our lift home. It’s not a coincidence that this 10-minute staggered walk was the catalyst for my realization that my mobility was beginning to decline and I needed an aid.
I think the intensity of this attack was because my senses, particularly my lack of vision, left me feeling so estranged from the world. Despite the thousands of people there, I felt the loneliest I’d ever felt in my life.
My second attack happened in October 2019, a little more than two years later and on the first night at the Shift MS Sessions, an educational and social weekend in Bucharest, Romania, uniting young people with MS from around Europe. I was a new wheelchair-user, and it was my first time traveling abroad as such. Aside from the fierce emotions surrounding this, I hadn’t socialized much in the previous 18 months due to my Lemtrada (alemtuzumab) treatment and simultaneous paralyzing relapse, so I was anxious about being around a large group of people I didn’t know.
In this case, all the anxieties and emotions stacked up. As I wheeled into the banquet room for the welcome buffet, the chatter, the noise of the band, and the heat of the room all triggered another sensory overload episode, which led me straight back to my room.
If I’m unable to remove myself from a situation when it’s getting to be too much, I’ve learned one way to ground myself: I get centered by focusing on my senses. I count all the things I can see, hear, smell, touch, and taste individually and out loud.
I look at sensory overload as an occupational hazard of MS. These experiences and situations triggered my sensory overload attacks, and they were necessary for me to learn what exactly triggers me. While it can be confusing since my triggers change with my fluctuating symptoms, the attacks are something I know I needed to experience. Putting myself in these situations not only teaches me my limits, but it means I’m living. That’s something I won’t let MS take away from me.
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