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.
Beth offers these photos as what she calls “a visual representation of how my optic neuritis affected my vision.” (Photos by Beth Shorthouse-Ullah)
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.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.
About the Author
Comments
Leanne Broughton
I do not have panic attacks but feel anxious inside when I sit in front of my computer screen, like google or facebook. There is too much to look at and decipher.
Cynthia MacFarlane
Thanks, Beth
I didn't know there was a name for this awful feeling. I usually say that I feel like I'm going to explode ..... and ask people to give me time for all my "molecules" to get back in line. It is quite overwhelming .Thankfully it doesn't happen every day. The last time was trying to go through the checkout at Costco ... it is so confusing ... and not set up for someone in a ♿ .
Mark Mander
I have RRMS and was diagnosed in 2014. Being a male and 54 at the time I was outside the expected curve of folks who get MS. Anyway I really appreciate your story about sensory overload. I experience that as well especially in a crowded place especially a store. My system gets completely overloaded. My balance gets worse, my legs turn to tree trunks. I look around for a place to sit...and there is none. My mind gets foggy and unfocused and then I am hit with panic because no matter what I am holding onto I am going to loose all control of my muscles and fall. Thankfully I have not hurt myself too bad, more my pride. I have finally learned now to swallow that pride and start using a walker that has a built in chair. For me having to use assisted devices has been a very hard step but it allows me to continue to do some of the things I still want to do. Thank you for sharing your story it makes me once again realize that I am not alone in this journey.
MADELINE l NEWTON
wonderful example for something that has happened several years ago and i just thought it was for i had gotten way over heated ...thank you for posting this for the rest of us to see that this is something that has happened and why ...thank you so much...
tamara lillard
This answers so many questions about my own experiences. Just going shopping for groceries has had to change from the large mega stores to small neighborhood stores. A one hour trip leaves me with foggy vision, breathless, exhausted and stumbling about - I sometimes have to take a nap which turns into 2-3 hours. Thank you for sharing these intimate details, it helps, as I am a widow and live alone.
Brenda Drew
Thank you for sharing your personal story and experience with MS! I can relate in some ways and I'm sure a great many other MS Warriors can as well in one way or another! How about the idea that many with MS have been people that are HSPs i.e. highly sensitive people who have had their central nervous system testing to the MAX! Many top psychologists around the world have already stated that MS can also be caused by excessive negative stressors and from great loss, both of which I have experienced for over 50 years! Some say "stress doesn't cause MS"! I beg to differ! Excessive negative stress factors can and do lower one's immune system making them a sitting duck for MS! This has been scientifically proven in many cases! Brilliant scientist Clinton Ober who developed the "grounding mat" has stated in his book on Earthing and on the brilliant documentary "Earthing" who has worked with hundreds of MS patients says that great loss IS a contributing factor! On the MS Trust.org in the UK, many people with MS state that "TRAUMA", either early childhood trauma, sexual abuse/domestic violence, adolescent abuse,/young adult hood abuse all lead to MS! Our fragile central nervous system can only take so much and that also leads to high cortisol levels in the body and Adrenal fatigue syndrome! The body/mind and spirit connection i.e. holistic health! We're not just a physical body, we also have a brain/mind and are "spiritual beings having a human experience".....Dr. Wayne Dyer! Hope this helps and helps to open some more eyes! Keep questioning! Inquiring minds want to know! "knowledge is power"...self-empowerment!
Tom Anderson
Nice responses. I think you hit a "nerve"! If one is paying attention in their MS journey, at least they may develop a little self-awareness. Nice post Beth.
pamela garner
I do believe that many stressors can cause ms. I always said stress can kill you. I was having panic attacts also and almost became angoraphobic. My first sign was ms hugs and uneven gait.I believe any chronic disease is so stressful as you lose your ability to do more and more things,how many days have i said "just one more thing lost".it is hard to stay positive.but for every loss I try to find something I have gained., like kindness of people,I have learned more compassion for others, and I am greatful that i wake every morning,.Never be afraid to reach out for help, my neuro suggested for me to go to talk therpy,he said we could all use some including him......
Penny-Marie Wright
I used to wear underwire bras years ago. before MS, & hated them,. Took the wires out & tried to wear them without until I could buy new ones. From what you're saying, Brenda Drew, maybe I've had MS all my life without knowing it. I went through all that trauma that you describe. I've had it since Jan. 2002 that I know of. I hope they find a cure for it soon as I also have Fibromyalgia( Jan. 2020), close cousin of MS My Neurologist say's that even all the drugs out there now none are for me.