Ever wonder what it feels like when someone says oh I have sensory issues and can't handle that?
Let me explain I have a sensory processing disorder and it's severe. I also have sensory migraine and the two are intertwined and debilitating and like to bother my other complex neurological issues (currently diagnosed with FND and Tourettes). I do adapt things to help me deal with life as much as possible but it's still debilitating and I can't do a whole lot because it and I am hypersensitive meaning I am sensory avoiding so that's what I will be describing. Let's begin...
Ever been to a store and you just hear the lights buzzing above you? You hear the clothing being moved on the racks by other shoppers you can even hear their breathing? You hear their shoes and carts thump and squeek across the store's floor. The smell from each body is combined with the cleaners from the stores and the perfumes of all the candles and whatever deodorants are being used makes you want to gag. You feel the motion of your body and the world around you as you walk which threatens to make you dizzy if you move too fast. The music blasts from the speaker can combines with the chatter of what sounds like a million screaming voices but is only a few workers and other shoppers milling about around you. You reach out to touch something that caught your eye but the feell of it makes your skin crawl and itch so badly you can help but pull your hand away and scratch for a minute. You do this several more times alternating between gaging and and wanting to rip your skin of from pain and itching from the texture of most of these things you have touched. The lights flickering slightly in the corner makes your head throb and your eyes burn in pain the store really needs to fix that. Eventually you have enough and buy the things you came for and wanted (the few thing you could handle touching) and leave to finish shoping or go home and crash in a familiar environment.
Have you ever wandered why storms are so hard to handle for people like me? The loud thunder sounds feel like someone just hit me in the head with a base ball bat and my ears hurt. The lightning stings my eyes and makes my head hurt. My entire body hurts because now I'm in overload all the electronics in the house are buzzing I can hear it. It's too much. I can hear everyone's breathing and smell everyone's smell and I can't handle even the smell of myself never mind the smell of the storm it stinks. My clothes are too much and hurt my skin now I can't handle it I'm done. My entire body hurts and is buzzing and itchy and sore. It's all too much but no one can do anything all I want to do is sleep it off but I can't because it's too much.
Why you can't just hug or touch someone like me? ... It hurts it physically hurts when people or things touch me. It's not that I don't want a hug sometimes all I want is a hug but right now it's to painful to think about. It's like when you get a fresh bruise or cut and someone pokes it it hurts that's how all touch feels to me. It sucks I haven't been able to hug my parents in years.
At home it's familiar your used to the sounds and the smells and the textures of everything but certain things can still be hard. The difference in floor textures between the kitchen tiles and the rug in the living room is difficult on your feet. Your favorite pjs are ok your bed and you quickly put them on cus they hurt less then your "going out in public outfit". You have to plug in your toaster to make your safe food toast because leaving it plugged in is a waste of electricity at least that's what you tell yourself but it's too loud for you. Like the fridge is but you have to have that plugged in unfortunately even though the vibrating sound of the collinv device makes you want to explode. The water running in the piles is calming and infuriating all at the same time cus now you have to pee but you don't want your toast to burn. No TV to night it's too much but ao is a book so I guess just sitting playing a muted games on your phone would be good way to pass the time as long as it's on the lowest setting.
This past month my #Photophobia has been horrendous. It’s been so bad that I can’t even go outside most days even if it is cloudy because it is too bright for my eyes to handle. This leads to #Migrane I’m already #LegallyBlind / #functionallyblind / #VisuallyImpaired so… now I have too keep my eyes completely shut which just makes things harder. Thankful for my #MobilityAids This has lead to a #Depression episode and of course my #Anxiety has been troubling a bit too. Mainly my #Trich has gotten out of hand because of the anxiety. But, good things are coming as I did have a tint evaluation for specialized glasses for the #Photophobia now we just play the waiting game and hope I can somehow obtain enough money for the second specialized pair that I can use for daily tasks once I find out the cost!
If #RareDisease has challenged you from looking into a new passion, but you want to try something...come join a new group focused on finding purpose again. We’ll share, discuss and celebrate our small wins. 🥳
I wanted to let y’all know why I’ve been so inconsistent with posting
I went to the ER two days ago at 4am cause my pain had been at an 8/10 for 48 hours at that point
All they could do for me was give me a drug induced nap not take away any of the pain so I’m back home again in the same pain
So that's ✨fun✨
My head and neck are killing me. My face really hurts
Another restless night. I’m thinking about my life pre-illness. What I used to do, how I used to feel. The innocence of existing without constant pain. I think it’s okay to mourn for the life you used to have as long as you don’t stay there. I used to run on the playground and dance onstage and go to school all day without pain. However doesn’t everyone have sorrows? We are all processing our own type of baggage. Why is grieving such a taboo subject when everybody does. It’s the human experience. It’s not our joyful or our happy times that define us. Our sorrows uncover us. It makes us raw and authentic. In hard times we find who our true friends are and we discover how strong we really are. We live in a very instant society. Commercials and adds and billboards and phones and people telling us immediately how to solve our problems. Got crooked teeth? Use Invisalign! Got acne? Use Olay! Got rolls of fat? Try this new diet! There’s no quick fix product for sorrow. So what do we do? We burrow ourselves deep into the artificial perfect exsistence of our phones. We scroll through millions of pictures on Instagram, hundreds of videos on YouTube. Teens spend an average of 9 hrs a day online. 9 hours looking at a little rectangle that’s supposed to help you! Human exsistence is about the sorrow, the pain, and the hardship along with the joy and the happiness. No amount of pictures or videos or articles or Snapchats or Stories or Tweets or anything artificial can keep us sane and protected from our feelings. Don’t be afraid to feel. #EhlersDanlosSyndrome #ComplexRegionalPainSyndrome #Migrane #Upallnight