This is going to be my thread about Tourette's. Like the title?
For the past few weeks especially I've been dealing with crap from my family regarding my illness. My tics recently shifted from mild motor and vocal tics that barely anyone would notice to very disruptive ones. My family, despite knowing that I have Tourette's and having that knowledge since I was 15 years old, never seems to listen to me when I tell them I can't control it.
It took a long, intense conversation with my therapist before my mom would allow me to go out in public without slapping my hand over my mouth whenever I felt the need to tic, which would often leave the inside of my lips bleeding because it was such an urgent need to satisfy it. Now, just 3 days later, she's starting up with the complaints again. My entire family is joining in this time.
My dad sent me a text last night to tell me to keep it quiet so he could sleep. My response was: "Okay, sorry." But really, it's not that difficult to shut a door. Despite the fact that it takes very little muscle movement to shut a door, I ended up spending the entire night trying to keep myself as quiet as possible. It's exhausting.
I have a messed up sleep schedule and it's been that way for a long time, and each time I somehow manage to fix it, it always goes back to the way it is now. The longest I've gone with a normal schedule was two months, and I felt so good during those two months, but now no matter how hard I try to fix it, I'm unable to sleep normally. My family says I've been this way since I was a baby. I was never able to sleep at night except for when I was severely depressed as a teenager and all I wanted to do was sleep my life away.
Anyway, my mom came down about 30 minutes ago to give me grief about how I'm still too loud for her to sleep. She tried to sugarcoat it with "I know you can't control its" and "I love yous," but she quickly followed up those statements with "But..." something about how I'm too loud and I need to control it. "I know you can't control it, but you're so loud that I can't sleep. You need to find a way to control it." How does that make sense?
And you know what? I wish I could sleep, too. I really do. I wish my sleep schedule was normal and would stay normal. I'm trying, I'm eating healthier and doing relaxing things and doing my best to avoid napping when I can unless I'm feeling depressed. But even when I AM tired and trying to sleep, my allergies keep me up, too. My house is dusty as hell and I'm allergic to dust, and no one is helping me with that either.
My circadian rhythm is messed up, and I know it makes it difficult for everyone to sleep, but you can do what my sister does to help her sleep: SHUT YOUR DOOR.
I hate to be ranting about my parents like this because I love them, but seriously! What's better? Being able to see what little you can of the hallway, or being able to sleep? The answer is clear, but no, just keep blaming me for the things I've been dealing with my entire life that I can never permanently fix, one of which helped get me severely bullied and isolated in school, and which paired with other issues caused me to drop out. The one that keeps me from being able to work, and the one that makes me ashamed to leave the freaking house because you're constantly hinting to me that I should be.
I don't want to be like this. I know they want me to take medication, but those have very limited results and they're the same medications that caused me to be a total zombie as a young teenager. They really dulled me down, and now that I'm off of them and I'm able to start being myself I'm starting to feel alive again. I'm not sure if this is the life I want to live, though. I'm watching videos of people who are accepting of their Tourette's all the time and trying to apply it to myself, but it's a bit difficult when I'm being told not to accept it and to dull myself down again.
I'm so frustrated, not only with them but also with myself. "We're still learning how to live with it!" It's literally been 4 years. You're not still learning. You're freaking avoiding it.
Well guess what? It's here, and it's not going to go away. Please, just be kind to me. I'm sorry it's ruining your lives, but it's ruining mine too and you don't seem to understand that I want it gone as much as you do.
I don't know how to live with this.
