The Other Side of Tourette… It’s Not Just Tics
My name’s Luana. I’m a blogger, designer, college student, whacky person, and girl with Tourette Syndrome. And that last item… I only found out about after turning 20. Last year.
You might say I’m pretty good at being absurdly confused about myself, which is not a skill you can put on your resume, but does come in handy sometimes. There are no doctors who know about Tourette’s where I live, and, after things got wilder than usual with my tics, the confusion helped me find answers on my own. Yes, on the *whispers* criminal dark web.
Ahem, I mean, online. You can learn a lot from the right (non-criminal) places like tourette.org, and finally getting the answer to every tic and compulsion and mood swing took time, was scary, and definitely… Amazing.
Since then, some things have gotten easier, and others harder.
If there’s one thing Tourette’s knows how to do well, is being unpredictable, and everything changes all the time.
For me, tics got relatively worse after my teens, and the (um, literal) pain of it is what shocked me enough to do some digging into “what is up with me”. But, I guess I’m pretty used to ticcing by now. It’s something I’ve done since I was 9, as far as I remember, and it can be annoying, and the absolute worse, but also, just fine.
What I never saw coming, though, was how wild the *other* side of Tourette’s would get for me.
Because it’s not just tics
And although I was familiar with some of the mental aspects of it before, my brain decided I needed some adventure in my life this year, and went completely bonkers. You’ll… See what I’m talking about.
Now, the thing is… Tourette’s is part of who I am. And I would never want to change that. But it’s also hard to deal with at times. And talking about the bad stuff is, usually, pretty hard. Specially when it doesn’t completely make sense.
But… Having some vague idea of what’s going on and that it does make sense somehow, can actually help a lot. So, in the middle of a rough patch that I’m still not fully out of, I stayed up through the night, feeling awful, and took to writing this silly twitter thread at 4am.
To get everything that was driving me crazy off my mind, or… Just to say it. Scream it out into the void.
And so, here it is now. A random collection of things that can happen on a bad day when you have Tourette’s, and that just happen to, apparently, feel relatable to other twitchy Touretters. Which is… Crazy. None of us are alone in all this weird, and I don’t think that’ll ever stop being amazing.
*Vicious mood swings*
I am fine now… OKAY GAH, WHAT JUST HAPPENED, I DON’T WANT THIS WAVE OF AWFUL, STOP IT, THAT HURTS, oh it passed, hi
*Insomniaaaa*
Yes, I’m so tired it hurts, but my brain won’t shut up until 4am anyway, so why even bother, ahaha, I’m a vampire, I’m… I’m tired 😳
*Indecision and executive disfunction*
I’m hungry, I’m standing in the middle of the kitchen, there’s food in the fridge, but whaaat the heck am I supposed to do? Oh look, midnight, I still haven’t eaten, cool
*Random bursts of unstoppable stressful energy*
Is it just me, or is every nerve in my body being electroCUUU!!!ted??
*Crazy brain fog*
Can’t think, can’t do, did I just… Spend the whole day laying on the floor?
*Achy everything, ohhh the pain*
When… When did I become an old lady?? Ow, that hurt… Ow… That hurt too…
*Compulsive loops*
Ever brushed your teeth so hard and for so long you get physically tired, make your mouth sore and, um, break a tooth? I… May have. (still haven’t gone to the dentist, shhhh)
*Sensory overload*
Everything’s!!! Too loud!!! Too busy!!! Too smelly!!! Too much!!! Stopppp!!!
*The occasional meltdown*
So yes, I got out of breath and started crying last night, and then I was, um, sobbing, and couldn’t stop, and couldn’t sleep, and felt like I was dying, and still don’t know why? Ha… Yeah
*The dark pit of awful*
This is like, depression in short bursts. I slowly slip in, and Bam!! Numbness, hopelessness, exhaustion, crying, everything is bad!! Two days later I’m out of it. Maybe. I hope. Um, pretty please?
*Restlessness*
Need! To move! Need! To tic! Need! To get out of class before I burst, oh my gosh, where’s the restroom 👀
*Senseless anxiety*
Why worry about things, when you can *feel* freaked out without even worrying? Out of breath! Fluttery heart! Wide eyes! Nerves! Nausea! All while walking down the street!
*Can’t handle normal things right now, sorry, try again later*
So yeah, washing the dishes will make me cry, this wet towel makes my brain scream, DID THE PUPPY JUST LICK MY FEET? I’m walking on mud, agh, don’t think about it, don’t think about it, don’t think about i—-
*Extreme feelings*
Everything’s so absurdly intense I may drown in it, woop
*Wild thoughts*
My brain’s faster than me, one random thought crashes into the next, and here I am, thinking about the particle-wave duality of light while brushing my teeth
*Forgetfulness*
I generally have good memory, you know, but, that one thing I had to do *30 minutes later* oh! That thing I had to do! *2 hours later* Aghhh, that thing I had to do
*Skin picking*
I don’t even want to get into this bloody ridiculous awful thing, ahdgdhshah
*Losing track of time and being almost late*
Wait… This happens every day, nevermind, disregard it
*Harsh stimming*
Sometimes you just gotta stay sane, and hit your chest and pinch your arms and scratch yourself by rubbing your face too hard with a sponge to do it, you know?
*Guilt trips and plummeting self esteem*
It’s not my fault (but maybe it is), I’ll be fine (but I’m breaking), this will pass (I’m a mess), I’ll handle it somehow (no one could ever bear being around me, why would they even try)
*Isolation*
I—- Oh there’s a wall in front of me. And… Behind me. And to the side. I have… No one… With me… Anywhere… Ever…
*Obsessions and compulsions*
Did I pet the dog with my right hand? Gotta do it with the left. Did I make sure without a shadow of doubt that I had everything with me before leaving for work? Better do it again. And again. And let it consume my mind on the way there too, why not.
*I’ve been drained and can’t no more*
I mean, you can tell everything I’ve said so far is tiring right? Right???
Aaaand, I ran out of tweets, might as well just leave it at this…
But you know, the good stuff’s pretty intense too! It’s not bad all the time!! It’s just, um, this was a rough week, and I’m tired and it’s 4am now, bye
But you know, the good stuff’s pretty intense too! It’s not bad all the time
Other Blogs by Luana
When you feel like it’s your fault – on the Tourette Podcast blog
Living with Tourette’s – on Clover Letter
