Rapid City has a pizza place that another mold avoider recommended to us. They serve high-quality gluten-free pizza and she told us she never reacted to the pizza or the building. We went there today for dinner and guess what? I didn’t react at all either. I can eat tomatoes and cheese again!
They had really loud music playing at the restaurant and I noticed that it was a little uncomfortable. “A little uncomfortable? That’s it?! It’s miracle!”
For years sound sensitivity was one of my most debilitating symptoms. I had to wear earplugs almost constantly to prevent overstimulation. If I had to leave the house, I wore earplugs and earmuffs.
When I got overstimulated it felt like every nerve in my body was vibrating mercilessly. My neck and spine would be overcome by the most awful tickling sensation you can imagine. My brain would shut down and I could no longer think straight. The physical experience was so horrifying that it often led me into utter panic.
And if it got really out of control, my skin would get so sensitive that I couldn’t bear to be touched either. I remember one particularly horrible occasion when the best thing I could do was to lay naked on a sheet on the floor and close my eyes, desperately willing my nervous system to calm down. Even my clothes and blankets felt unbearable.
So, I learned to listen to my body and avoid auditory stimulation. If I didn’t, I would pay for it dearly. This meant I spent my days alone in bed with the door to my room closed. For a long time, I didn’t visit with more than one or two people and I didn’t listen to music or watch movies.
It was isolating, but it sure beat the torture of constant overstimulation. And I honestly don’t think I’m exaggerating to use the word torture… The experience is so difficult to describe that I don’t believe anyone can really understand how dreadful it is unless they’ve also experienced it.
It wasn’t just the volume that mattered it was the number of different sounds coming from different sources. Clearly, something about my brain’s ability to process sound was broken. It was like my brain couldn’t choose what to pay attention to and couldn’t tune out background noise. It assigned equal importance to every sound so that I simultaneously heard everything yet understood almost nothing. The chaos was painfully overwhelming.
Yet here I was, today, in a restaurant with loud music and a dozen different conversations buzzing all around me. I. was. fine. Just a little uncomfortable. I almost wanted to stay longer just to prove to my flabbergasted self that my sound sensitivity was really gone. My brain actually works again! Now I know that I really am getting better.
That’s not the only amazing experience I had while I was in that building. I also went to use the bathroom and was immediately hit by a very strong bleach smell. “Oh dear!” I thought. “Should I turn around and leave?” Bleach used to be one of my worst triggers. It could cause trouble with my breathing. “Would staying risk a serious reaction?”
In the end I decided to use the bathroom anyway. I knew that chemical sensitivities had resolved for many sufferers doing extreme mold avoidance and I had already noticed that my own reactivity to fragrances is almost completely gone. I just hadn’t encountered bleach since then and it made me a little nervous. “It’s just chemicals” I told myself and I was fine. I didn’t react at all. Wow!
I can eat pizza, listen to loud music, and inhale bleach! Haha! Don’t worry though, I have no desire to go crazy with any of these things and I’m certainly not going to start cleaning our van with bleach.
Still, I’m just so proud of my body for all the healing it’s done and that it can actually handle these triggers now. Like a champ too!
I realize this might sound weird to some my healthy readers but I think it will resonate deeply with other chronic illness sufferers who, like I did, have come to see their bodies as an enemy. So I’m going to say it anyway…
I’m so sorry I ever blamed you for hurting me and destroying my life. I understand now that you were just trying to warn me about the toxicity in my environment and doing your best to keep functioning under very difficult circumstances. Thank you for keeping me alive until I was able to figure that out. You’re the best! I’m so proud of you, and I love to see everything you’re capable of now that we’re in a good environment!
I send out a weekly digest with updates about our adventures. To receive these updates click here.