Senses On Overload, Mister Spock

ME/CFS is neurological. It's not just all in my head, but that's where it starts. To witness, it causes serious sensitivity to all my senses. When I am in a flare, it causes my eyes to be sensitive to light to the point where any bright light produces a hangover-like ache that can trigger pain to refer down my neck and shoulders. On bad days, tinnitus symptoms go from normal to bad and make my ears very sensitive. Because I live with a small child or two at times, this makes any screams or even loud crying very painful.

But it's not just eyes and ears. My sense of smell can be very strong. If something is cooking, I will often be the one to tell anyone when they have less than a minute to save their meal from burning. That's handy, but it often isn't handy or helpful when someone doesn't listen and the house is filled with aromatic cremains of "botched meal." Smells I didn't grow up with, like cauliflower or beans being softened up in a crock pot, are extremely uncomfortable and can leave me queasy. I've had entire meals ruined by a single burnt side dish when my nose gets in the way.

Feelings Stronger

Perhaps the strongest sense I feel so very strongly isn't sight, hearing, or even smell-taste, it's touch. When I'm sensitive, little irritations like clothing that's too tight or rough, or skin that's too dry or too wet or sweaty, or even just a casual, accidental brush of someone walking by. I've had people brush by and it feels like they took all the nerves in my foot and sent every sensation in every neuron's memory all at once up my leg into into my head. WOW!

It's one thing to be dealing with the flu-like malaise and crushing nerve pain and brain fog, but to suddenly have the rush of a thousand different live-wire sensations running up your body to your brain, it's a bit like smashing your finger. Suddenly, the fatigue, the pain, and the fog don't matter a bit. The brain overload of someone merely brushing my foot pad with their leg as they walk by has me grasping my thigh and verbalizing--loudly--electrical shock and sensory overload. They didn't do anything, which sometimes is the worst part of ME/CFS.

Not Just A Sensitive Type

I don't just mean having sensitive nerves. I have had sensitive nerves ever since I was born. I had the genetic test recently to prove it, actually. I feel pain more intensely than most people. I have "Spidey-Sense" ability to tell when the oven is on from anywhere in the house not by smell but by feel. I can usually tell when a stove burner is on even when I'm in the next room. Why? Because I was burned often enough of as a kid. Burns are insanely painful, and they teach your neurons to remember what heat is. They're sensitive, but it's not the same as the ME/CFS sensitivity. I also have had tinnitus, which is why I became a sound tech. I needed some way to keep the music at church within my pain tolerances. Until I was in my late 20s, I didn't realize other people don't hurt when certain audio frequencies were hit. I figured everyone heard and felt what I heard and felt. "When did you realize...?" is a game I sometimes still play.

For this reason, I have what I'd like to call buffers. Just like you'd put foam in a pillow to fluff it up or put blinds down to block most of the sun when you're driving into the sunset or sunrise, I have buffers that take the edge off. Sometimes, I run out of them and I miss them. But here's a short list of

My ME/CFS Sensitivity Survival Gear

This is the stuff I use to put a buffer between me and a world of hurt when my nerves just can't cope.

Foam Earplugs

They're just dime store variety ear plugs but sometimes they are more valuable than gold! They are used in dozens of industries and hundreds of employers buy them by the box of 500. Strangely, what non-users don't always realize: earplugs do not usually make you deaf to all sound. They're meant to filter out a lot of it and let you hear the meaningful parts like when someone's shouting at you to get out of the way before you get squashed. Unless you're jamming two or three of the things in at once, you can usually hear people talking with normal voices for the most part.

But the high end of the sound, the treble that your parents HiFi had, the sound that the tweeters were there for and the stuff that sends most tinnitus sufferers through the roof? That's filtered. As well as some of the low range, bass, the thwup-wubba-wah-thwup-bup-owww sound that goes through walls every time the kid with the sub-woofers drives by, that's filtered to not hit your ears as much. And if you're not using them when your ears are nuts, you need to.

Earbuds

It's one thing to not hear what can drive you nuts. It's another thing entirely to need to not be where you are. How do you discretely escape while your friend is driving you to an appointment?  Having a pair of earbud style headphones are like having earplugs with the ability to cover up whatever is grating on your nerves. They're not just handy. They can be life savers, especially when you're travelling. 

Until God gives me something to match my eyelids for my ears, a pair of earbuds is perhaps the best way to disengage the world, with one exception and that's ...

Over The Ear Headphones

Ok, I can hear it now. "Steve, come on! You've already got earplugs and earbuds. Why do you need over the ear headphones?" Trust me. There are benefits and tradeoffs to each, and OEH fit a real niche.

Plugs are low tech, depend on nothing but your ability to roll them between your fingers. They don't get twisted up or wrapped around your neck if you fall asleep with them in. They function no matter what. Buds travel well, provide an aural sensation that you can focus on or simply use to cover up the worst of the noise. OEH don't travel so well, despite what that kid with the "Beats by Dre" headphones at the airport might have you believe. When you are in your "coccoon" at home, they work to isolate like no other, especially if you purchase a reliable "active noise cancelation" tech built in. It cushions all the painful noise you can't take in. Plus, they physically cover your ears in a way the other two just can't.

Add to this the fact that some have microphones and most have a volume control that is independent of the device it's connected to means you can soften things out without having to tweak every device you plug into. It's convenient. 

In the next post about Sense and Sensitivity, I'll cover the other senses and what else I use to set things right, or at least cope with symptoms until they improve.

This post is dedicated to my firstborn, Skye. Happy 20th baby! So much has gone right since I saw you arrive! I am the proudest papa on the planet!