I want to tell you about last night, because it might make some people realise that Tourette’s syndrome isn’t a joke and isn’t something to laugh at and take the piss out of. /1

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Like many others with Tourette’s I have something called tic storms (others call them tic attacks)

present differently for each person, mine mean I fall to the floor and shake and thrash about uncontrollably. I am aware but cannot communicate. /2

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My tic storms can last anywhere from 10 minutes to 6 or so hours.

After thrashing about on the floor I suddenly stop & become motionless and cannot move my body at all. Slowly from head downwards I start to move, but this can take several hours. /3

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So that’s a very brief overview of my tic storms.

Last night I had one in my bathroom. I went to transfer from the toilet to my wheelchair and instead kneeled forwards and smashed my shoulder against the bathroom floor. /4

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I then started uncontrollably shaking and thrashing about, bashing my head against the door and wall.

My partner heard the noise and immediately came to assist me.

He placed pillows under my head and stayed with me. /5

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I am also asthmatic and tic storms can trigger my asthma off. Last night my partner thought my asthma had kicked in so got my inhaler and gave it to me as best he could.

Last night my tic storm was relatively short but extremely tiring. /6

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I have muscles all over my body aching like I’ve done a workout, when actually it was a tic storm.

So eventually I froze last night and as usual I was very out of breathe.

Not only am I constantly moving, I also have breathing tics throughout. /7

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When frozen/paralysed I can usually blink. So I blink once for yes and twice for no, so that I can answer important questions.

Then it’s just a waiting game for my body to start moving.
Even once it starts moving I am very weak. /8

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Last night my head, shoulders and arms could move but the rest of me was still frozen.

I was exhausted and just wanted to sleep.

It wasn’t accessible to get my wheelchair to me, so my partner suggested basically dragging me along the corridor. /9

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I laughed, but then realised it was the only way I was going to get back to the bedroom and into bed.
I’m too heavy and long to be lifted so dragging me was the best option.

So yep my partner dragged me the short distance into the bedroom. /10

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Then we had to try and work together to get me on to the bed.

Eventually with a lot of effort from us both I just about got onto the bed.

My partner swung my legs round into a comfortable position for me so that I could attempt to sleep. /11

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My legs still wouldn’t move when I woke this morning. It didn’t worry me but it shows how long affects after a tic storm can last. /12

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This was a short ish tic storm and I had it in my flat with my partner here.

I however often have tic storms in my flat when I am alone, it terrifies me as I genuinely don’t know if I’m going to injure myself so badly it’s life threatening. /13

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CN: emetophobia

I have broken bones, had concussions, bruises, grazes, asthma attacks, been sick and more whilst having a tic storm.
And that’s all on top of the tics.

So having them alone is terrifying. /14

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I also have them out and about in public, as I cannot go out alone (this is one of the reasons why) then at least I have someone with me who knows how to assist me.

But in my flat I am often alone. /15

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So that’s a tiny snap shot of one area of Tourette’s syndrome from one person.

So yeah it’s not all swearing and fun and games, trust me. So next time you want to laugh at that person ticcing or that Tourette’s joke, maybe stop and think. /16

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