Awkwardness for the sake of truthfulness

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Hello everyone! I hope you had a wonderful Thanksgiving! I am thankful for all for you who continue to support this blog, and this cause! In fact, because of your support, I can now confirm that my recent blog: Tourette’s is a pain. Literally. was chosen to be featured in the Tourette’s Association of american newsletter! I will provide some photos when my copy is shipped to me.

This blog post is dedicated to another step in not only becoming more comfortable with my TS, but with spreading awareness and recognition of all the little things that the disorder hinders in some way.

I feel like having TS has happened in or four different phases theough my life:

There was the phase of not knowing what it was and being accused of  lying about my inability to not perform a tic.

Then came the “I’m just gonna pretend this doesn’t exist and hide so I don’t have to admit it.” phase.

Then came the realizing that this thing isn’t going to magically disappear and that I’m now an adult who can’t hide all day, so I may as well get comfortable in my skin phase.  It was the phase that allowed me realize this doesn’t have to be any more of a hinder than it is on the surface, and eventually lead to me creating this blog.

Where I am at currently, is a phase of comfort that allows me to admit that, while I refuse to let my TS hinder me from living as normal of a life as I can, it does have it’s role in my everyday life that I’m tired of making excuses for. When someone questions why I do/do not do something, or why I may have an unusual anxiety over something that relates to my having Tourette’s,  I’m doing my best to answer with blunt honesty. It’s not always easy, and I’m not always perfect with it because I have conditioned myself for years to make said excuses. I was afraid of how people would look at me, or pass my true feelings off as an excuse in itself.

So why now? I’m not really sure what the answer to that is, but i have a theory that as I get older I realize more how damaging it is to cover up these truths. And admitting them after making excuses for so long has been met with some blank stares, but I genuinely think that is because no one knows how they should respond. By taking this step, i hope others will follow to make this dialogue easier and more commonplace.

Tourette’s, like many diseases and disorders, isn’t always debilitating. It isn’t always even physically present. But that doesn’t mean it isn’t there, and that it doesn’t have an impact always. It’s time to stop letting people get away with thinking so.

It’s awkward, but necessary.

 

 

They can’t control it, but you can/should control your reactions.

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And we’re back! Thank you to those who have continued to support this blog. As I mentioned before, I do not want to come here and post a blog just to say I did, or stay on some sort of schedule. I feel like that really bogs down the meaning of this blog. With that said, you may see these long periods of time between posts.

I am posting today because I have seen a disgusting amount of posts on social media platforms regarding the way family members, friends, and even spouses handle living with someone with TS. It not only breaks my heart, but lights a particular fire in me that I can not sit by and idly let burn on its own.

Disclaimer: I am not here to tell someone how to parent their child, etc. I am simply here to provide you an internal view of how certain actions effect the person in your life with Tourette’s. I can only speak form my personal experience, and the reactions I see from my peers in the TS community. This might get a little rant-ish, so bear with me.

Let’s get this out of the way: Living with someone with Tourette’s is not always an easy thing. If anyone understands that to the fullest, it is we who have the disorder. Day to day things are always changing, whether it be our tics or how we are handling them.

With that in mind, it is ON NO OCCASION ok to punish someone who has TS for having TS related symptoms or comorbidities! NEVER!

I saw a post the other day that almost made me sick to my stomach about how an individual said she found the cure to her child’s tics by “accidentally” breaking his Xbox so he can’t play his games any longer. It was clear she was implying if the child stopped ticing, then she would the repair or buy him a new one. This is one of many posts I have seen from individuals who punish/shun people with TS to other rooms and so on.

Let me explain to you why this punishment tactic seems like it works, but it actually doesn’t. You are now telling that person/child/etc. that on top of suppressing tics at work/school/in public, you now expect them to do so for YOUR comfort. And it may work at first, because no one feels worse about being disruptive than we do! But eventually, the urges will boil over. When they do, they are often 10 times worse, and cause other comorbidities to strengthen such as anxiety because we are afraid to be punished for what we cannot control. Furthermore, a resentment will grow. A realization will start to become clear that we are not being accepted for who and what we are, and I can speak from experience that a wound like that can take decades to heal, if ever.

The reasons actions like the ones mentioned above are unacceptable would take me days to cover, but the number one on my list is that there are easily found and professionally laid out resources for family members related to helping them learn to cope with this diagnosis within the family. The Tourette’s Association of America is always a great place to start, and they have an entire portion of their website dedicated to this subject. I’ll even make it easy for you to find/share with anyone who may need it. Just click HERE.

Be kind to one another. Be supportive of solutions to disruptions, instead of authoritative about something that you could never command away. We really are all in this together!

See you all here next time!

Things that scare people with TS

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Hello everyone! Thanks as always for supporting this blog and the fight for Tourette’s Awareness. Without you this would just be an idle vessel.

This blog entry is sort of a seasonal theme, which is something new, but I hope to sort of make a “thing”. With Halloween less than two weeks away, I thought it would be fitting to list some things that scare me because of my TS. This is not meant to be a blanket statement list. Everyone experiences TS differently and I’m sure has their own type of fears because of it. These are just the ones I feel might be of interest, or might fit in with a good portion of the crowd.

  • Long lines at the grocery store – O man…lemme tell you how much fun it is to be in line with people who are already generally in a bad mood, cramped between two racks of magazines with a bulky cart as you try not to draw attention to yourself, or twitch your arm and knock something over. It isn’t fun at all. In fact, I have circled around the store in hopes a shorter or new line will open up just to not stand there longer than I have to.
  • Being stuck at long lights or in construction while driving – This is sort of similar to being in a long line, but now the people in the car next to me are assuming I am either on drugs or shouldn’t be allowed to drive my vehicle. I can’t keep my windows down on a spring day at lights because I don’t want anyone to hear me tic. It truly makes me hate driving.
  • Theaters. Library’s. Anywhere that involves being calm and quiet for long periods of time. – I remember the fear I used to have going to class, especially that first day when you don’t know anyone in class or how they’d react to your tics. i get this fear any time i have to go to a graduation, or even a funeral.
  • Losing our friends – I feel like this is a fear for most people, but with TS, it is twice as frightening. It is hard enough to make friends as a normal, healthy individual. When you have something like TS that can be socially embarrassing, it is hard to find people who not only don’t mind being around that, but know how to conduct themselves.
  • Long trips – Again, most people get anxious about these. However, they aren’t worried about injuring a passenger on the plane with a leg or arm tic. Or worrying said passenger demand they be moved.
  • Medical exams – Whether it be the dentist making you hold your mouth open a certain way and you cant jaw tic. Or an eye doctor asking you to look a certain way and you can’t eye tic. Or maybe an x-ray and you cant twitch your arm, leg or neck. not being able to tic in these situations causes a lot of anxiety. After a very long root canal last year, I can attest. Nothing makes you want to tic more than being restrained.
  • Holding babies – For the record, I am not afraid to hold a baby. I love babies. I love being around babies and have tried to be a big part of my nephews life since the second he was born. This is more a fear of holding a sleeping baby, or holding a baby while other people are watching you. I say this because, I in particular have a tic where I will scrunch my oblique and abdomen. And when you are holding a child in your lap, that is going to move them. It might even wake them up if they are sleeping. And if someone is watching you, they are going to start questioning why they let you hold their child. Awkwarrrrrrd

That concludes my short list. As I said, this is not going to hit home with everyone, but I think the idea of having unique fears because of your TS is pretty common. If you’d like to share yours, I’m all ears (Ok, well eyes) Who knows, maybe we will have them in common. Sometimes that is as comforting as anything.

Be safe out there and HAPPY HALLOWEEN!

I wouldn’t wish TS on my worst enemy…BUT…

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A big thank you to those who stuck around and helped the first entry after a long break become a big success. It feels nice to be back consistently advocating for awareness, and to see that the passion of the community is as high as ever!

This entry is going to focus on the things that as someone with TS, I wish others who didn’t have it had to experience at least once in their life as someone with the disorder. Hopefully this wont come off as vindictive as it had originally sounded, but the feelings are real, and I promised when I started this blog to be as transparent emotionally about Tourette’s as I could.

As the title states, I wouldn’t wish Tourette’s on my worst enemy. I wouldn’t wish for someone to have to deal with the lack of control and all the things that go with it every day, through every stage of life.

BUT

There are a few things I do wish they could experience for a day that I feel aren’t just unique to TS, but many illnesses and disorders.

The overwhelming anxiety that this is controlling my life – It’s well documented that Tourette’s is chronic and there is no cure. With that said, TS is a 24/7 attachment to whatever it is I am doing. I think about how it effects my work, my personal relationships, my sleep, my overall health…and sometimes, it feels like the inability to not think of how it affects every part of my life makes it feel like it is controlling my life. If others knew how daunting this is, they might be more understanding of how to combat these thoughts and how just the littlest thing can have a big impact.

How it effects even the things you’d never expect as a bystander – As someone without TS, you may be able to draw the conclusion that it effects your ability to interact with others in work/school and social situations. But what if I told you TS even effects my ability/confidence to drive long distances? It also effects my ability to keep my car windows down on a nice spring day because the second I get to a red light and I feel a tic coming, I roll them up to protect myself. These are just few of many personal examples, and I think anyone reading this with TS is already creating their own list and nodding their head. Tic’s are more than what you see on the outside, and if more people understood the parallel reactions we have even doing the smallest of tasks, we might not feel the need to make up excuses and instead be honest.

What it’s like to be stared at and not be able to stop what drew their attention – Imagine you are at the grocery store when you suddenly realize you have toilet paper trailing from your shoe. You draw a few stares then look down to find the culprit and immediately disconnect the paper. When you look up, no one is staring anymore. You have eliminated anyone’s reason to and can go about your shopping trip. Now imagine that toilet paper is permanently stuck. You have to walk around the store as the guy or girl with TP hanging from your shoe. No matter what you do, you can’t lose it. This is a silly but valid representation of what it is like to draw stares for ticing in public. No matter what you do, you can’t stop doing the thing that is drawing the attention. If others knew how demoralizing it is to not only have to fight the embarrassment of being gawked at, but the way it causes a self-depreciating tone of voice inside us because we just wish we could be normal, they might think twice before looking our way.

I could probably go on and on, but I think after this, most of the items link back into the 3 I listed. The point of awareness is not just for people to understand what TS is, and to raise funds for the fight against it. Raising awareness to me is just as much about making it some people like me didn’t have to wish that others could feel the things above just so that we don’t feel alone.

Let’s be considerate, and above all, let’s be kind to each other.

Resilience with Tourette’s

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Annnd I’m back! Thank you for all your patience in my absence. I’ve recently been dealing with a lot of stress and comorbidities that have zapped not only my positive energy, but my desire to be engaged with anything and anyone. I had to dial back and focus on fewer things and build my resilience back up to the other parts of my life I’ve been neglecting. I stepped back from the blog schedule not because Tourette’s awareness isn’t just as important to me as it was a month ago, but because I refuse to half heartedly speak on the matter just to stay on schedule. I wanted to instead wait until not only my heart, but mind were in it.

Without further ado…lets get into this entry’s main focus: Building resilience with Tourette’s Syndrome!

I recently caught up with the latest webinar held by the Tourette’s Association of America that was given by Dr Kenneth Phelps Ph.D. In this blog, I’d like to summarize some points I found most impactful.

One of the first things discussed was the difference in recovery, resistance, and reconfiguration. He used an example of a tree in the wind. It might recover by returning to it’s sill and upright position, resist by upbringing of roots in a sort of defiance, or even reconfigure the way it grows and moves to better suit it’s surrounding of high winds.

Re-configuring is a form of building resilience. It not only causes you to acknowledge that something negative or counter-productive is happening, but to also take control of what you can to adapt when those things arise to the point of mastery. As someone with TS, you can’t control the way others might react when you tic, or even when you try and explain what Tourette’s is. What you can control, is how you respond in those situations. When you do something as simple as prepare a default response to hecklers, you are re-configuring yourself to the unpredictability of society.

Another note that I felt was deeply important was that resilience is about experiencing suffering alongside strength. You don’t build resilience without something to react against. The recognition of this is a step to building resilient behaviors such as focusing on something positive or easy to control in times of angst and understanding that the angst is what gives you the opportunity to do those things. Dealing with a general lack of control of my body with Tourette’s has forced me focus on the way I communicate with others, and myself. If it weren’t for that lack of control, I may not place as much importance on these things that are a critical part of success in many facets. That recognition is a building block of resilience. Taking the bad and figuring out what I can do that is good to counteract it.

Lastly, he touched on how mindfulness is a key factor in being resilient. Being mindful allows you to not react to situations, but instead respond. When a situation such as an increase in tics arises, instead of reacting in a way that might include withdrawing from activities, or self-depreciation, be mindful that these fluxes usually aren’t forever, or that overtime you will find ways to adapt by just remaining in the moment and living with it. Resilient individuals are often able to identify anxious or negative thoughts that are strictly reactionary; Step back for a moment; Then respond in a controlled matter instead, knowing that those reactions are only temporary.

Resilience isn’t something you are born with. It is somewhat forged by fire and the striking of ax on stone. It doesn’t happen overnight, and if it is something you struggle with, it can be achieved with determination. In fact, if you’re struggling to find resilience, yet still trying, you’re already halfway there.

You can watch the full webinar HERE. I highly recommend it!

TS: A look on the light side.

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Thank you to everyone who has supported, liked, commented, and shared this blog. This cause would never get off the ground if not for your enthusiasm!

This week I’d like to sort of lift out of the fog of the negatives and scary things about Tourettes, and take a moment to look on the light side. While I feel like being honest about the hard parts of the disorder and how it makes me and others feel, it is equally important to realize that sometimes…it can be quite humorous.

I’d like to disclaimer this by stating that I am not making light of TS as a whole. My previous blog content will back this up and being an adult with TS I understand how troublesome it can be in every aspect of life.

With that said, let’s get into some humor!

Have you ever felt personally victimized by a tic? I sure have!

Just yesterday my boss was kind enough to buy me lunch from my favorite Mediterranean restaurant. I don’t traditionally take a lunch breaks, so I instead was indulging at my desk with on hummus and a pita triangle when my shoulder jerk tic happened, forcing my hand upward and smearing hummus all over my nose instead. To make matters better, my boss just so happened to be walking down the hall to hand me some paperwork at that moment. All I could do was laugh because, here I was. about to construct a tax return for a corporation with hummus all over my face, and my Tourette’s was to blame.

That, however, doesn’t top what happened to me on my drive home a few years back. I rarely forget when I’m at a red light and someone in a passenger car is clearly flirting with me because, frankly it doesn’t happen often (the wedding ring on my hand that is usually out the window is usually a repellent I suppose.) So, what did I do? Start flicking my wrist, tensing my obliques, and all sorts of other random tics that made it look more like I was dancing than anything. I decided to roll with it and actually started dancing, which made the passenger in the other car dance, and we both got a good giggle out of it.

The point is, sometimes, laughing is the only thing I can do to keep from crying. And you know what? Sometimes it even completely changes my mood. Tourette’s is a serous matter and has serious impacts on individuals, but being able to laugh when a situation calls for/allows it, is something that has helped me come to terms with the lack of control in my body.

Have you ever had an incident like this? I’d love to hear them! Feel free to comment, or find the blog on Facebook and twitter!

The times they are changing

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As always, thank you to everyone who has been following, sharing, and contributing to this blog by liking, sharing, and commenting.

This week’s topic is related to my recent neurologist appointment…my first in 17 years! If you’ve been putting off an appointment as well…maybe I can help ease your mind.

Boy…let me tell you…a whole lot has changed in that amount of time.

First and foremost, I met with a very kind, soft spoken neurologist whose demeanor instantly put me at ease. I cannot stress how important that is for anyone in the medical field, or who may be considering it. When a patient is dealing with something that is not only scary (It’s still scary some days) but riddled in stereotypes and horror stories of misdiagnosis, it is that immediately established personal connection that allows the defenses to come down.

Now…to get to all that change I was talking about. From the second I uttered that I was meeting the doctor for TS, it became apparent to me how far research has come in understanding how the disorder really works. The doctor had a respectable list of questions that felt extremely relevant to not just TS, but what it is like to have TS continue to be influential in adult life. She took time to explain that the way we treat Tourette’s has, and continues to change. While there aren’t many FDA backed and verified studies, there have been enough done to offer patients a wide range of medications, as well as CBIT.

Each medicinal option was laid out for me by class, whether it be anti-psychotics, anti-seizure, muscle relaxer…etc. Not only did she have a full list of options, but also explained how each one works to reduce tics, and the possible side effects. We ended up deciding on an anti-seizure medication, but after doing a little polling and research, I decided the brain fog side effect is too much of a risk with my job. I plan to follow up and consider other options.

Of course I still got to do the Nerve check test where you close your eyes and touch your nose, walk on your toes and heels, and all sorts of other things that make you feel absolutely silly. We discussed my neck tic and she agreed it could be causing my headaches, but that the headaches themselves are probably migraines that are triggered/aided by the movement. It was a relief to know that there is no physical injury at this time, and I am still working hard to fight that tic every step of the way.

It was also a relief to come out of the fog a little bit and join the new era of TS treatment and Neurologist relation. Sometimes it’s just nice to have a professional remind you that you’re not crazy, you can live with this, and that they are there to help you along the way.

The puzzle of Tourette’s may not have a solution, but we are getting closer. Keep up the good fight!

It feels easier to let them think I’m weird: Telling others about TS

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As always, thank you so much to everyone who has read, shared, and commented. The last entry was an astronomical success, and I was so grateful to have others reaching out to me with their stories.

As mentioned in the last post, I recently saw my doctor and finally came clean about my TS and my concerns. I am happy to say I have one FANTASTIC doctor who actually listens with a compassionate and ear. She did refer me to a neurologist who I will see in a few weeks regarding my tic issues and what may or may not be going on with my neck/headaches. Mid appointment, I stumbled upon this week’s topic.

Why is it so hard to tell people I have Tourette’s?

My TS diagnoses came when I was 12 years old, and until recently, I’ve spent most of the last 17 hiding it. (You are allowed to do the math) But why? Even as the world pushes towards universal acceptance for everyone and every condition?

I’ll admit, for most of my young adulthood, I kept expecting the “You’ll eventually grow out of it” to kick in. Mind you, my diagnoses came at a time where TS was far less researched and understood even compared to just a decade later. I wasn’t given many treatment options because they simply didn’t exist on an accessible scale. When I didn’t grow out of it, I assumed it was something I did wrong, which brought on a lot of shame. Shame that was only amplified by the memories of being bullied and having people who were supposed to have my back not believe me.

I held on to that anger, and it swallowed so many years whole. Years I could have been honest and spreading awareness in my little community were wasted, all because I couldn’t admit that I even HAVE TS. When that sunk in…it sunk in hard. At 25 years old,  I finally made a post on FaceBook that was sort of my coming out party. It felt nice, and eventually, years later, I started this blog.

By now I figured I was cured of that anxiety, but as I sat in the waiting room ready to discuss having TS with my doctor, I realized I was wrong. Sure, I went through with it, and that is something even just a few years ago I would have never considered, but I was still very torn up about doing so. You see, sometimes it’s easier to let someone think you’re just weird and not dealing with some sort of health issue. The second I tell someone about my TS, I feel like they start looking at me differently. Like they suddenly notice every little tic and every closet of my comorbidities are cleaned out. Even when there’s no indication, I start to put that strike on me and the insecurity can be so heavy sometimes I wonder why I even bothered.

What’s helped (not cured) this issue is remembering all the good that comes with spreading awareness. What better way than to be a walking, living representation of a disorder surrounded in stereotypes and misquoted facts? If each person I talk to about the issue takes away just one fact, then I have done more good in the TS community, than all the bad I think I could do to myself.

I may not wave my TS around proudly, but I refuse to wave it around shamefully

Tourette’s is a pain. Literally.

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As always, I would like to thank everyone who has continued to support this blog and this cause. You are the vessels of awareness that the TS community so desperately needs.

This week’s topic is as the title alludes to. PAIN.

I have said it before, I’ll say it again, and probably 100 more times: Tourette’s is more than tics. It is more than what people see on the surface, and sometimes, even more than what they may observe about your comorbidities.

Sometimes Tourette’s is straight up painful.

Physical tics can cause fatigue and even wear and tear on certain muscles, and even lead to injury in some cases. Vocal tics can put a strain on the vocal cords and cause sore throats or voice loss.

Imagine you go and work out and after doing something such as squats repeatedly; your muscles are sore the next day. You’d probably skip squats the next day, right? With TS, you don’t get a say in when you stop these proverbial ‘squats’ and this can lead to more soreness and eventual injury.

What made me bring up this little nugget of truth is that recently, my neck tic has really started to cause me a lot of issues. I am getting headaches that range from the back of my neck where it meets my skull, and up around my temple. Sometimes they last for days with very little response to OTC pain killers, and it took me a while to connect the two events. At first, I’d get one maybe once a month and then they’d disappear for a long while. Now, I’m getting them multiple times a month and the duration and stress they are causing has reached a level that I am going to bring them up to my doctor this week.

Part of me wanted to do this blog for the usual reason, which is to spread awareness. The other part, admittedly, wants to see if anyone else reading has brought up a tic related injury or concern to a doctor, and if they were able to give them any decent referrals? Is there something I should be looking for in response to this? I’m nervous about it, despite the fact that my GP is very personable and has never brushed aside a single issue I’ve brought up.

This is Tourette’s, my friends. It’s a cycle of tic, react, stress, adjust, rinse and repeat.  I wanted to let you in on that as I feel it, again, is real. It’s the personal side of the disorder that need’s to be brought to the world’s attention just as much as the definition of the disorder itself.

It’s like batting with a strike against

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Once again, I’d like to thank everyone who has supported this blog in any way. Without you, this movement for awareness would simply stall out in cyberspace.

This week’s blog is going up a little early because I’ve come to find that if I don’t capture these things as they happen, I shy away, which does the community no justice. Today’s blog is not going to be written with a smile. It isn’t going to be a joyous occasion, but it will be real. And after all, isn’t that what the world really needs? Someone to stop sugar coating every thing?

Have you ever heard someone go into a situation where they weren’t confident and say they were “batting with a strike against”? This could practically be the moto of my life some days (more days that I’d like to admit.) Tourette’s has always made me feel like I’m stepping in the batter’s box down a strike, and that I have to be razor sharp in every way just to be successful/likeable. Any mistake feels like it holds the weight of twenty and takes me right to the edge of striking out. This happens at work, in my marriage, and my friendships.

The worst part? I know it’s happening!

I know that when my Tics are bad that I am more susceptible to being easily over stimulated, sensitive, and moody. I know my brain is just looking for a reason to get down on myself and remind me that I will never be normal. I will never be pure and perfect. And to make matters even worse, I also know in my heart of hearts that none of those things are true! (Yea, I’m a hot mess) Knowing that gives me a false sense of security. It gives me a reason to think I can control myself when in reality, I feel like I am absolutely at my least controlled, and I end up doing the very thing I don’t want to do, and I hurt someone. I hurt myself.

I wanted to put this out there because I’m also aware enough to know I’m not alone, and still know that there was a time when that knowing wasn’t a reality. If you are in that place, please know that this is not some false “I’m just doing this to make you feel better” confession. We are human. We are flawed and as beautiful as flaws can be, they are still flaws. That is HEAVY, but it doesn’t have to be a burden.

There is help, and often it’s the help you’d offer to someone else, and if you’re like me, not offer yourself. Help comes when you value yourself enough as others, look in the mirror, and tell yourself it is ok to reach out. It is ok to get help. It is ok to talk to someone. It is ok to admit you’re not doing ok, because there are no strike outs in life. There is no score. There is only another chance to swing.

Knock it out of the park.