Diagnosiversary
Hi Gang! Sorry for the unintentional hiatus. I admit that I've been enjoying not plumbing the depths of my soul for content for this blog, but I've definitely missed sitting down and writing. From now on, I think I'll only be posting when I actually have something to say instead of trying to post twice a week. I hope that this way, I'll be able to post more compelling stories and thoughts so reading my blog is actually worth your time. I've had a few lame entries of late. I want to make sure that when I look back on this in a few years time, I'm proud of what I wrote instead of being proud that I stuck to an arbitrary schedule. Also it was silly of me to decide I would post the same nights as prime time NFL games.
It's been an interesting experience not posting and mostly not Tweeting. I think we can all agree that there's a relationship between tic severity and thinking about our Tourette's and our comorbids. For the most part, I've been pretty chill. I think that not pressuring myself to post was beneficial in both a "Not thinking about it" kind of way and in a "Not causing myself anxiety" kind of way. Today was really my first bad tic day in a while, and I wonder if it's at all related to the fact that I was intent on posting tonight. I definitely felt some agitation while trying to think about what to write tonight, and I know that contributed to it. I love being a part of a few different TS communities online, but it sucks that engaging other people and thinking long and hard about our condition tends to exacerbate the symptoms. I think that's one of the features (Options? Bells and Whistles?) of TS that's hard to explain to someone who is neurotypical. It's not like they're going to say, "Oh yeah, when I have the flu it gets so much worse when I think about having the flu." The self-defeating aspects of TS are the hardest for me to deal with, I think.
Anyway, to my actual topic: Last Tuesday, December 11th, was my one year Tourette Syndrome Diagnosiversary (my wife and I have many -iversaries, which is why I have invented this awful, awful word. One of these days, I may even tell you the story of our Danciversary). It's been an interesting 12 months, both TS and otherwise. It occurs to me that there's a small part of this story that I haven't shared with you all yet. Nothing revelatory, but certainly relevant. Mostly it serves to highlight how awesome my wife is.
I was diagnosed in December of 2017, and my neurologist put me on clonidine. I've mentioned in a previous post that I used it for six months and went out in a haze of overmedicated glory. In that whole time, I don't think I really accepted that I was a Tourette's patient even though a legit neurologist was like "Yup." After going off the medicine, I felt physically better but still a little lost. I was certain that I didn't want to try any more meds. I was also certain that I was staring down the barrel of a life lived with a difficult neurological condition: difficult to live with, difficult to overcome, and difficult to explain. I still felt a lot of the impostor syndrome I felt in my second post ever. My wife, who I've mentioned here before, is the freaking bomb, and about a month and a half after I went off the meds mentioned to me that she'd been listening to the super awesome Tourette's Podcast. She sent me a link to Season 1, Episode 11. I started listening in the car. At one point the guest, a guy named Dave, says something to the effect of "Having Tourette's means having an extraordinary sense of where your body is in space" and I think I actually said, "Holy SHIT!" in my car. It was right there and then where I was like "Man, I really DO have Tourette's! I'd just never heard someone else try to explain how it feels all the time!" ...I didn't say that part, I just thought it. Italics, next time. I binged all the other episodes and felt so so so at home in all the conversations, and I was so in awe and so humbled by how all these other TS patients had accepted their diagnoses and had tried to integrate their TS into their lives. I decided to start blogging in August, and how here we are near Christmas. I just wanted to take a second to say thanks to everyone I've met online since then. Your bravery, your humor, and your honesty have made me a better person.
It's been an interesting experience not posting and mostly not Tweeting. I think we can all agree that there's a relationship between tic severity and thinking about our Tourette's and our comorbids. For the most part, I've been pretty chill. I think that not pressuring myself to post was beneficial in both a "Not thinking about it" kind of way and in a "Not causing myself anxiety" kind of way. Today was really my first bad tic day in a while, and I wonder if it's at all related to the fact that I was intent on posting tonight. I definitely felt some agitation while trying to think about what to write tonight, and I know that contributed to it. I love being a part of a few different TS communities online, but it sucks that engaging other people and thinking long and hard about our condition tends to exacerbate the symptoms. I think that's one of the features (Options? Bells and Whistles?) of TS that's hard to explain to someone who is neurotypical. It's not like they're going to say, "Oh yeah, when I have the flu it gets so much worse when I think about having the flu." The self-defeating aspects of TS are the hardest for me to deal with, I think.
Anyway, to my actual topic: Last Tuesday, December 11th, was my one year Tourette Syndrome Diagnosiversary (my wife and I have many -iversaries, which is why I have invented this awful, awful word. One of these days, I may even tell you the story of our Danciversary). It's been an interesting 12 months, both TS and otherwise. It occurs to me that there's a small part of this story that I haven't shared with you all yet. Nothing revelatory, but certainly relevant. Mostly it serves to highlight how awesome my wife is.
I was diagnosed in December of 2017, and my neurologist put me on clonidine. I've mentioned in a previous post that I used it for six months and went out in a haze of overmedicated glory. In that whole time, I don't think I really accepted that I was a Tourette's patient even though a legit neurologist was like "Yup." After going off the medicine, I felt physically better but still a little lost. I was certain that I didn't want to try any more meds. I was also certain that I was staring down the barrel of a life lived with a difficult neurological condition: difficult to live with, difficult to overcome, and difficult to explain. I still felt a lot of the impostor syndrome I felt in my second post ever. My wife, who I've mentioned here before, is the freaking bomb, and about a month and a half after I went off the meds mentioned to me that she'd been listening to the super awesome Tourette's Podcast. She sent me a link to Season 1, Episode 11. I started listening in the car. At one point the guest, a guy named Dave, says something to the effect of "Having Tourette's means having an extraordinary sense of where your body is in space" and I think I actually said, "Holy SHIT!" in my car. It was right there and then where I was like "Man, I really DO have Tourette's! I'd just never heard someone else try to explain how it feels all the time!" ...I didn't say that part, I just thought it. Italics, next time. I binged all the other episodes and felt so so so at home in all the conversations, and I was so in awe and so humbled by how all these other TS patients had accepted their diagnoses and had tried to integrate their TS into their lives. I decided to start blogging in August, and how here we are near Christmas. I just wanted to take a second to say thanks to everyone I've met online since then. Your bravery, your humor, and your honesty have made me a better person.
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