My Coping Strategies

I thought I'd write and tell you about the strategies I have to cope and deal with my Tourette's.

I find my tics pretty well reflect my stress and anxiety levels, and since I also have Generalised Anxiety Disorder (GAD) it can be quite hard to get on top of that. With the help of my specialist and family we've developed a few techniques that help to calm any stress and also to help keep my mind busy and thinking as that helps the tics stop.

When I'm busy and thinking I find I'm much more controlled, whether that be at work or driving etc, however sometimes the tics are coming too hard and I can't control them just by being busy and that's where I use these techniques.

- 'Equal Breathing', this is where I breath in for six breaths and then out for six continuously for around ten minutes

- Tapping and counting on my fingers, counting patterns usually helps a little but can make my hands tic

- Playing puzzle games on my iPad

- Lying down can really help, it's like gravity slows down the tics.

And if all else fails just going to my room and letting all the tics out.

What do you do to control your tics? Does anything help? I take meds as well but they don't help much most days.

Much love, Julie

The past few weeks.

Let me start by saying I'm a disability support worker, and I'm slowly coming to grips with the fact that I have a disability myself.

Two weeks ago I had a ticcing fit. Like I said in my last post I've had these before and they usually last around five minutes, this one lasted an hour and a half. I was already in hospital because I'd cut my hand earlier in the day and it wouldn't stop bleeding, but must have gotten a sensory overload while sitting in Triage because I started feeling really odd really quickly. I texted my mum and my fiancé asking them to meet me there and by the time mum got there I couldn't hold myself up anymore, it was like all the energy had just leaked out of me. Mum asked for a bed for me before I feel over and not long after laying down in the bed it started. My eyes were rolled back in my head the whole time, I couldn't speak because of how tight the muscles in my face were, all my tics were coming at once and I couldn't stop or suppress any of them. There were new tics too, my body was doing things it had never done before, like my feet dragged themselves up behind me and my back arched to the point that my head nearly touched my feet (and I'm not a flexible person). I thought it went for about 10 minutes but turns out it was a lot longer. I had to move from one bed to another and that look 5 people to help and even then I fell onto the bed cause it was just too hard.

So yeah, that was crazy.

I haven't worked or driven since, I suppose I'm a little scared to really. My body has a constant buzz to it, like someone plugged me into a power point. Physically I'm fine, but I just don't feel right, I constantly feel like something's about to happen. How can I be a support worker when lately I need someone to support me myself?? I've had two short ticcing fits since then, and I can feel my brain charging away. I'm on Valium at the moment, as well as my normal meds, to try and get rid of that buzzing feeling but it's not doing much. I just feel like a ticking time bomb (pun not intended but brilliant if I say so myself).

So far there has been 15 page views for my first post, and I wanna ask, do any of you have experience with TS? Do you have it yourself? Or are you just intrigued? And if you've come back to check for more posts, then what kind of things do you want to read? Or would you like to see videos? I could maybe film some of my tics so you know what I'm talking about? Let me know, I'd love to hear from you.

Much love, Julie x

The one with the introduction

Hi :)

First let me introduce myself, 

Hi I'm Julie, I'm 24 and it's been one minute since I last ticced. 

I thought I'd start a blog for two reasons, one to keep friends and family updated on how everything is going along, and two to try and educate anyone who comes along about what life is like living with Tourette's Syndrome. 

You know, that disability you see in movies and on TV where people swear all the time, that's what happens yes? Or maybe not. For me at least that's not how it works. Did you know that the swearing tic has a name? It's called Coprolalia and according to Wikipedia (the place for all things true and reliable) only 10% of people with Tourette's have it. And you know what, if you have it then that's perfectly fine, it's not like saying that people with Tourette's who don't have Coprolalia are perfectly fine acceptable members of the community (which we are) and people who do aren't. That's just silly. I just want to show people that that's not all that Tourette's is about. 

I'd like to not have people ask me "But hang on, you don't swear. Or do you just stop yourself from swearing at work and do it when you get home?" (and actual question I've been asked many times) and if I can do something towards that then great. 

Would you like to hear my story? About how it all started, the long road to a diagnosis, what life looks like at the moment and what it may look like for the future? 

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For me the earliest I can remember ticcing would be around 10 years old, if I was overtired I would get this shaking feeling in my chest, kind of like when you're super cold, when your chest and shoulders start shaking and you can't stop them. 

That's what it felt like, just without the cold feeling. 

I was 10, and figured that was just what happened when you got too tired, didn't think to mention it to my parents and just dealt with it. 

When I was about 16/17 my dad noticed me twitching and jerking my arms and shoulders and demanded that I see a doctor. My GP referred me to a neurologist who turned out to be an arrogant old man, he figured he knew what was wrong with me, ordered some tested (MRI and an EEG) but told us I had myoclonic jerks. A myoclonic jerk is the same jerk you might occasionally get while falling asleep. It's also a symptom of something and not a diagnosis in itself, not that we would know this for another few years. 

The tests came back in support of the neurologist's thoughts and I spent the next 6 years drugged up to the eyeballs with anti-epileptic meds that would keep me dizzy, dumb, and with no appetite. 

Late last year I'd gotten to the point where nothing that I took was helping, and my 'jerks' were just getting continuously worse, I now made noises occasionally, had repetitive movements instead of just shock-like jerks, and decided it was time for a new neurologist who would actually listen. So it was off to my GP again for a new referral to a new neurologist who in our first appointment looked at my old scans, looked at me, did some thorough movement and reflex tests with me and told me that yes I had myoclonic jerks but no that wasn't all there was to it.

Over the next 6 months we tried a few different medications, none of which worked, before that neurologist frankly told me that he didn't know what was wrong with me, but would refer me to a movement specialist who would be able to find out. I really respect him for saying that, because there's no point keeping someone going all for the sake of not losing face. 

On June 7th 2014 I tripped into the city for my movement specialist appointment, I didn't realise how big a difference that appointment would make to me. The specialist asked me many a questions, did a few movement tests and went on to diagnose me with Tourette's Syndrome, Sensory Processing Disorder, Anxiety and obsessive tendencies. 

Having a correct diagnosis has made life all the more better for me, for one thing it means that I am now on the right medications, and I can research and find support groups that are right for me. 

However having a diagnosis hasn't made life breezy, at the moment I am off work because after years of bullying from my boss, my Tourette's has fed off my anxiety and has progressed to the point of me having longer and longer 'ticcing seizures'. Think of all the tics you can imagine (I have around 20 different regular tics but any movement or sound can quickly become one) now imagine if all of these tics, plus some extra writhing and twisting movements, coming all at once. That's a ticcing seizure. When I have one I can't talk or walk but I can think, it's not an epileptic seizure because cognitively I'm still there. 

They used to last around 5 minutes, just the other day I had one that lasted an hour and a half. These leave me feeling full of static electricity and exhausted all at the same time, figure that out. 

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So that's me, trying to figure out how to plan for the next 10 years of my life. Will my Tourette's calm down? Will it keep getting worse? Will I end up using a wheelchair? Or needing Deep Brain Stimulation? 

Stay tuned to learn about what I do to cope, products I use and tactics I'm learning to make the days pass easier. 

Much love, Julie x