I very rarely posted anything unless I saw a post that I felt I had a good answer to, or something that had gone unanswered for a little while. But I did read everything.
And I got sick of reading stuff from parents. I got tired of reading how they were embarrassed when their child was saying obscenities out in public and people were looking at them like they were a bad parent. I didn't want to read anymore stories about educators failing kids with Tourette's or parents not knowing what to do or ask for. And I'm especially tired of having other people's parents give me medical advice.
Newsflash; I already have two parents.
When I post things on the groups about myself, I'm looking for support or ideas from other Touretters on how they deal with something similar. I'm not looking for a bunch of moms to urge me to go to a doctor or to seek medical treatment. And I think I've written enough here about why medical interventions are not an option I'm willing to consider right now.
But that's what happens when you post in these groups. The average age of people with Tourette's is high school aged, but the majority of members are moms of children with Tourette Syndrome and the occasional significant other of a Touretter. And that's not the group I'm looking for advice from. I make a go of it on my own for the most part, but every now and again it's nice to bounce ideas off of another adult who is living through what you are. To say, has anybody else ever had to deal with this? I don't want pity or sympathy, and I'm certainly not going to give anybody pity or sympathy.
I can't stand reading these parents freaking out because there was a glitch and all of their friends saw what they posted about having a child with Tourette's and up until now it was a "secret". I think you all know my thoughts on keeping something like this a secret.
It is not something to be ashamed about and I refuse to let anybody make me feel like it is. And I think parents who don't embrace this attitude will end up doing their children a disservice.
And while I would never say anything, because I try to be nice online, I can't stand reading posts from mild Touretters about how hard their lives are and I especially can't stand it when they all start talking about their waning periods (when their tics get better).
When I give presentations (typically in education classes at my university) I start out with giving the clinical definition of Tourette's and I always say:
To be diagnosed with Tourette Syndrome you have to have motor and vocal tics for more than 12 months. You can never go 4 weeks without ticcing. To put that in perspective, since I was diagnosed I have never gone 4 weeks without ticcing... I have never gone 4 days without ticcing. I'm doubtful I have gone 4 waking hours without ticcing. And there are some days where I don't go 4 minutes without my brain trying to make some part of my body tic.
Trust me, I don't want to hear about how you haven't ticced all week.
I realized the other day that while all of my posts are about living with Tourette Syndrome, in an effort to remain upbeat about my disability, I forewent actually talking about my day to day life with Tourette's. So here it is; a short glimpse into my life with Tourette's.
The other night I posted this on facebook.
"Ugh. One of the worst feelings in the world is your brain desperately sending tic messages to your body, but knowing if you tic it will cause severe pain (on top of the pain you are already in). For you neurotypical people that would be like having poison ivy somewhere on your body but not being allowed to scratch it. I can't wait to have 85 pounds of Labrador laying on top of me forcing my body to chill out."
And I got a lot of likes and positive comments and it surprised me because in that moment I was fighting my brain for control over my body and over my anxiety. That wasn't meant to be a happy post; it was me griping about my night. I was literally lying on the couch in tears because I was in so much pain (from my tics) that I couldn't stand the thought of ticcing anymore but my brain was trying its damnedest to make me tic. And yeah, I was able to stop the tics from happening, but at what cost? My anxiety went completely out of control as I was trying to stop myself from ticcing because I was anxious about the pain that would be caused if I did tic. My anxiety is already running high because of everything that is going to happen in the next month (literally, in a month, I will be done with the semester... yikes). When my anxiety is up, it doesn't take much to push it over the edge.
I have been rocking the double-wrist splint since I got back from Arizona due to the carpal tunnel syndrome symptoms in both hands. The braces help the numbness and tingling, and also force my hands to not tic so I can't make the problem worse.
I've been clicking my tongue everywhere I go.
My knees buckle without warning when I'm walking, making me stumble.
I wrenched my back so hard in class earlier this week that it still hurts.
I head bang pretty much throughout the entire day, especially in class, which is doing wonders for my already poor balance.
I have to walk around with one arm outstretched to keep me balanced and even then I stumble and trip. When I'm standing still I wobble back and forth, making it look like I'm about to fall over. So basically, I walk around looking intoxicated all day. Awesome.
And in Safeway tonight, I had an anxiety surge as I got boxed in by other people and carts trying to check out because I was petrified my brain would win and I would tic into somebody or something.
This is what the life of a Touretter is like, and that's barely the tip of the iceberg. This is what I haven't been putting on my blog for fear that it makes me seem whiny or ungrateful. But there it is, a small window into my life with Tourette's.
So what did I learn from my experiment? That I'm much happier without frequenting these groups. I don't need the added stress from dozens of other people's lives; I have plenty of my own. So for now, I'm staying off the facebook groups.
I can only anticipate that my anxiety will get worse until Darcie and Owen arrive (hopefully soon!), but hopefully I can keep it as low as possible in the interim. Right now, I'm pretending like I'm not getting on an airplane next weekend; because by now you all know how much I hate flying. : )