How to describe what sensory overload feels like? Imagine your body and brain fizzing and swirling and being sucked up into space through a really loud vacuum cleaner that has no off switch—and all you’re trying to do is walk across the hallway to the bathroom.

Then imagine what it must feel like to experience the added sensory stimuli explosions and sensitivities at an event like Stanford University’s Medicine X ED, a conference I had the opportunity to attend in April, where I had the honor to deliver scheduled talks and take part in workshops to set better guidelines that were more patient-centric for the continuing education of doctors.

And also imagine attending such a conference while fighting jet lag and the effects of being off-kilter with 24-hour extended release pain pills.

Close-up image of a blue eye wide open that looks distressed with yellows and beiges surrounding it

It’s no wonder that by Saturday morning, the second day of the conference, I was in a state of sensory overload I had never experienced. When I walked into the conference I got smacked in the face with the background noise of people talking, eating and milling around that sent stabbing shivers through me and made it almost impossible for me to listen to or speak to anyone. The noise pressed against my brain, ramping up my pain levels, triggering the allodynia part of my fibro – so my skin was starting to burn and ache. Then, as my fibro ache began to grow and squeeze it triggered my arthritis pain. Before I knew it, the pain swirled around me, hurling me into the mother of all brain fogs.

But somehow I knew I had to get myself to the Wellness Room.

I spent all morning in the Wellness Room. It had heating pads, face-masks, Kind bars (thankfully!), a lovely small fountain with black rocks and lightly trickling water, and it was quiet. Quiet like a Library. Quiet like a classroom after school is out for the year. Quiet like there was no one else on earth, and I couldn’t drink in the quiet fast enough.

I shoved two to three Kind bars into my gullet, ate a banana and finished off the orange juice that I had enough mental stability to grab earlier in the lobby. But, my whole body was wrecked for the next four and a half hours. I sat in that amazing dark room, covered with a blanket, so soft it felt like a baby’s bottom, and watched the live stream of the conference.

I missed so many interesting sessions. I missed so many chances to connect and meet with other people in the industry. I missed the opportunity to challenge ideas from the patient perspective. But, there was nothing I could do. I had to wait until I got the right food and took pain meds and had enough time to slurp in the quiet like the best chocolate I have ever tasted. I was still exhausted after lunch but had more of my bounce back and definitely more of my personality.

Frankly, this incident shook me to my core.

I hadn’t realized that sensory overload could cause such a rippled effect in my body or that it could take me out for hours. Exhaustion is the name of my game, fatigue is my closest friend, and pain is my soulmate – so I always adapted and just pushed through but not this time. I couldn’t just rest a moment or take a nap and feel better. There was no better. My body said I had to sit down and shut up and just be quiet for as long as it took.

Now that I know how serious sensory overload is for me, I’ve become more aware of my triggers, such as noise and certain smells. To keep noise down, I carry earplugs with me all the time. I have stopped wearing perfume or using scented soaps. We don’t have scented candles or air fresheners at home and I’ve made those close to me aware of my issues and no one wears strong perfume or lotions.

But, in dealing with sensory overload, each day is a learning process and each day is a chance for me to better learn how to handle my life. It may be full of pain and unpredictable and not what I expected, but it’s the only life I have and I want to live it to the fullest! I want to be happy and have special moments with my kids and I want it to be the best it can be. So, I adapt…

 

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