So i’ve been trying to figure out what to put about this all day. And i still have no idea so i’m just going to go with it, today is international tourettes awareness day. Hope you’ve all had a fantastic day whatever you’ve been doing. I have tourettes personally and i have had it for a few years now, although i was only diagnosed last year in september. And it’s been a roller-coaster for sure. I’ve had tics for a long time now but they started to increase in the intensity in april/may 2016. I can only assume that this was due to moving from my long term care home to another care placement about 80 miles away from my family. It was obviously really stressful for me and i found it very difficult to adjust. This was the first time my tics really gave me any problems, although i can remember having tics pre-teen years.
So a couple of months after moving to the rochdale area i started having tic fits. Which if you don’t know, for me it’s like a tourettes seizure. I’m awake throughout the entirity of it (unless i somehow manage to knock myself out, which has happened before), but i can’t control any of my bodies movements. Thankfully though i can control some/most of my speech, which not everyone can. I can convulse and look like i’m an epileptic. These periods normally end up with me rolling around on the floor like a boneless fish. They can be relatively short and only last 20-30 minutes or they can be a lot longer. The longest fit i’ve had to date was around 8 1/2 hours long. But that was before i was on medication for my tics, while being on medication the longest i’ve had was over 6 hours long. It’s exhausting and mentally very challanging. It’s painful and it pushes you to your limit. It doesn’t matter where i am they can come on at any time. Thankfully i get some warning MOST of the time before my fits start. It’s really scary when i don’t though, but when i do they normally allow me to get to the safest place possible. But it’s never 100% safe. It’s difficult at the best of times, especially seeing as i have fits nearly every night without fail and they usually start when i lie down to go to sleep. And it’s even more difficult because of the fact that when i have them in my room it’s impossible to let the staff at my care home know i need some extra support from them. And i’ve still not quite gotten used to wetting myself on my bedroom floor at 4am because i’ve needed to pee for the past 3 hours and i couldn’t hold it in anymore. So yeah tics intensifing to this point is really difficult for me.
Something i think a lot of people don’t know about tourettes is, i can hold my tics in. Like i don’t reccomend anyone holding in their tics though. Here’s why…..
- It hurts like a witch with the letter b. (See what i did there, lol such a comedian)
- I can’t concentrate on anything else that well when i’m trying to suppress.
- I have to tic eventually and it’s usually a lot louder and more extreme than if i’d just done it in the beggining to start with.
- I don’t truly need to most of the time, like if i’m at the shop it’s not going to kill me to shout out a random word or phrase every couple of seconds.
- It’s likely to end up in me having a longer, more painful tic fit later.
I think the most difficult thing to deal with though isn’t the physical pain that i’m constantly in from my tics and from holding in and suppressing my tics, it’s other people’s reactions. People can be so so cruel. And i’ve had a lot of varied reactions, from being asked to stop even when i’ve explained i can’t help it, to being called a liar and getting told i’m faking it. And my most memorable reaction when i was in an interview was the interviewer pointing her cross around her neck at me and trying to excorsise me, in the middle of an interview. Yeah i’ve had em all. It’s rough and it does some days make me not want to leave my room, never mind my house becuase i’m worried about people’s reactions.
I hate how tourettes has changed the person i was going to be but i love how it’s changed the person i’m going to become. For example for a long time before my diagnosis i was wanting to be a dog handler in the army. Now this is an issue for me because if we were trying to ‘lay low’ and i shout out chicken nugget, i could get us all killed. But it’s made me more compassionate and creative and has made me start working harder to achieve my dreams.
It’s completely unpredictable and you never know how your days going to be. Less than a week ago for example i was at the manchester tourettes support group and started the day off meeting new people, less than 3 hours later i was fitting on the floor and a few hours after that my carer was ringing for an ambulance because my fit wasn’t stopping. But then other days i can go a full day without having a fit and that’s a massive win. It’s different every single day.
All in all if someone said here’s a magic pill and it’ll take away your tourettes, i wouldn’t take it. But if someone said here’s a magic pill and it’ll take away all the prejudice and stigma around it and it’ll take away the pain you go through. Well then i’d bite their arm off.
So at the end of Tourettes Awareness day 2018 i want to ask anyone reading this to be kind. Behind the tics are a whole other story. And this is all just stuff directly related to Tourette Sndrome (TS) not even touching on the co-morbid conditions that normally come with it. And for the love of god don’t joke about it, because it’s far from funny.
With love and dinosaur hugs
Alanis x
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