There is this form of neurological expression that mixes together senses and allows people to hear colors or taste sounds for example, it's called synesthesia. Pretty freaking cool if you ask me, but what is it like for them? I wonder how strange they must feel exclaiming how purple their pork tastes. How many times have people looked at them like they were bonkers or just really bad with vocabulary.
I think there are probably some really nasty side-effects with sensory information like that but there could be some really cool ones too. Multiple chemical sensitivity is like the evil step-cousin to that, there is really nothing good about it. Maybe we are the human evolutionary equivalent of Canaries.
Chirp Cha-urp
So what's the deal with MCS? Most doctors are skeptical at best about this diagnosis, it's considered another waste-basket diagnosis and they believe it stems from psychological factors and stress. There is a ton of conflict about this and illnesses like gulf-war syndrome are beginning to point doctors in the neurological direction. Which for Fibro's makes a lot of sense. Some brain imaging research shows that there is a change in the brain of those affected, just like FMS. Despite any research MCS is still in the realm fibromyalgia was decades ago.
Sometimes I try to remember what life was like before fibromyalgia and would I have been skeptical too? I think the only logical answer is yes, we are inherently skeptical creatures and we have trouble believing what we haven't experienced. This is another; if you know - you know, but then if you know -you have it.
Is it really so hard to believe that chemicals could do this damage? Bee colony collapse- anyone? We see it all around us. But we know why don't we? Because the solution is so economically and personally painful we can't really say it out loud. But I'm not trying to go all self-righteous it would be more than a tad hypocritical of me yeah? However, I will tell you just how badly I am affected by this.
I have made a ton of modifications to my life for this part of my fibromyalgia and I still run into trouble every time I leave my home. Sometimes even inside my home, accidents happen. The most obvious trigger is perfume, EVERY PERFUME is bad, really really bad, but the killers are the musky ones, and I'm not excluding body wash, shampoo, deodorant or lotion here. All very bad, and do you really smell so bad you need quad-level protection from your funk? Equally as frustrating is air fresheners, in cars, toilets, carpets. I can't tell you how many times I've been misted by an air freshener and it was like a smell-bomb ruining my day. How about detergents and dryer softener sheets? Do you know that fabric softener is considered to be one of the most toxic substances in your house? There is no regulation on the chemicals they contain and those are known carcinogens and chemicals on the EPA's list of hazardous waste. Would you consider eating a dryer sheet? If you've been wearing clothes with it all day then you might as well. There are so many things that contain "fragrance" and that term is without regulation, here is an amazing post on the dangers of synthetic fragrances: https://branchbasics.com/blog/2015/01/fragrance-is-the-new-secondhand-smoke/
There are so many things people don't even think about on a daily basis, things like; candles, and hand soap, hand sanitizes, lip gloss, powder, hair product, makeup, healing balms (Ben Gay will make me sick for days!) toilet paper, even the holders, bug spray/lamps, cleaning materials, plastic products, magazines. Part of branding for a lot of stores is their own personalized scent, which they spray on everything.
Some of the other things that get me are chemicals like, car exhaust, pesticides, solvents, paints (which is particularly sad) basically anything aerosol, fumes, oil, bleach, even vinegar can be too harsh if I don't dilute it enough. Btw I use vinegar to clean the world.
So what happens when I get exposed? If I am already run-down then it takes very little to set me off. First I start to feel a little warm usually my arms and neck and the bridge of my nose. I get kind of splotchy. If I'm lucky I feel a bit cranky and dehydrated but I can push through. If I'm not as lucky I'll start feeling uncoordinated and thirsty, a sore throat, eyes burn, maybe I'll yawn excessively and I'll start to feel emotional and lethargic a headache brewing. If I'm super unlucky and, for example; someone wearing that musk perfume hugs me while my hair is down and I can't get it off me quickly then I'm slammed with fatigue so thick I can't sit upright, I can't talk, can't think I have to get to someplace where I can lay down. the worst part about this scenario is that often I'm too fatigued to strip and shower before I collapse on a bed, I'm so lethargic that whatever position I land in is the position I'll be in until the stupor wears off. Then the only option I have is to take a shower and wash my sheets. On more than one occasion I've had to repeat this process because even that wasn't enough to get rid of the smell. When this happens it's usually outside of my house and It's very hard to get where I need to be and it makes me fearful of social situations. Especially cramped social situations, movie theaters, public bathrooms, airplanes.
I can't go near the detergent isles in stores, and if it's Christmas season I just can't go near stores at all. I almost never go to the mall and if I do it's a store that has an outside exit, never through. If I know I'm going to a store that's smelly I wear a mask. So far every time I've decided to do something "normal" I end up exposed.
I still haven't figured out a way to politely decline a hug if I'm not sure (sometimes I pick up stuff so my hands are full or I don't make eye contact and then I turn away like I got distracted at just that moment, I'm a terrible liar and it just feels wrong) but often I just don't see it coming until it's too late. I love hugs. It's torture. Having chemical sensitivities really amps up your social awkwardness, more so when you were already awkward.
It can be really hard to explain this to your friends and family and even harder to ask them not to wear something or to change habits, it often takes me a while to work up the nerve to request a change from someone, but most of the time people are willing to try.
My sincerest love to anyone who has ever made an accommodation for my sensitivities.