As the season turns and autumn starts shuffling in I’ve been in a reflective mood. I don’t know what I’m going to write in this post – I don’t know if I can coherently express the frustration, anger and sadness that I’m feeling at the moment – and I’m not sure if I can un-muddle the mix of things I’m experiencing. I’m pretty sure it’s going to be one of those posts that treads the thin line between honesty and self-pity. If I slip across that line I apologise, but I need to write when things feel difficult as well as when they feel easy.
Two years ago today I wrote about getting stuck to Leftwing Idiot’s rough matting and how upsetting it was to get carpet burns from it. Back then this phenomenon was referred to as the ‘dying fish’, now it’s what I call a ‘ticcing fit’.
Back in September 2011 my fits were becoming an increasing problem, but a problem I was fighting to ignore. Just over a month later they suddenly increased and became a permanent part of my everyday life. Two years on they’re still with me.
Over the last couple of days the arrival of another disruptive tic has thrown me off track and brought the unpredictability of Tourettes into even sharper focus. This new arm tic is making simple tasks much harder, and longer to complete. I’ve been trying to put a positive spin on it, telling myself I just have to accept the different pace and that worrying about it won’t change anything. But I’m finding it tough going, both practically and emotionally. It’s a stark reminder that my body’s not fully under my control and that Tourettes can – at any moment – give or take away basic functions.
But this is just a background of sadness and frustration. What’s making me feel really hopeless is that a lot of the time my behaviour isn’t under my control either. I’ve joked in the past about how I overreact to strange and obscure things – sawdust, penguins, dog toys and rolling ‘r’s. But I also overreact to some of the minor stresses of life in a completely disproportionate way. I’ve explained how small disagreements, criticisms, or frustrations can trigger behaviour that’s difficult to manage and very destructive – things like biting my arm, lashing out, or hitting my face. I hate this behaviour, not just because it’s painful and draining for me and everybody around me, but because every time it happens I feel I’m losing a little bit more of my confidence in myself, and that the person I am and want to be is getting lost.
I worry excessively about the impact of my obsessive behaviour on other people. It creates anxiety that can lead to tense interactions, which in turn lead to yet more overreaction. It’s a vicious cycle and one that leaves me feeling powerless, guilty and ashamed. But as Leftwing Idiot often reminds me, there are some things in these situations I do have control over. I can’t control the tics themselves or my overreactions, but I can control some of the factors that make them more likely to happen – time pressure, tiredness, not eating properly, trying to do too much, or not thinking things through.
Now I’ve had a good cry and talked to some of the people I’m close to about how I’m feeling, it’s time I thought about what I can do to take control over the things I can control, and find myself again.
My strategy doesn’t involve a gap year in India and Nepal, but it does involve doing things that open up more gaps and spaces in my life. I’ve decided to:
• Take time to prioritise and plan what I can realistically undertake and achieve
I’m going to do this with my support worker every morning at work and allow myself enough time to move between tasks or places. I’m also going to do the same thing at home. I’m planning to talk to my boss about using some of my annual leave so I can have a day off each week for the next couple of months to give myself some slack.
• Accept that I don’t need to get to the end of my to-do list
There will always be more things to do than there is time to do them.
• Make time to relax and keep away from screens
I spend a lot of time working on the computer. I sometimes feel ruled by email and assume that everything has to be done at top speed. From now on I’ll check my personal email only twice a day, and I’ll look at work emails only in work time.
• Enjoy the company of my support workers and friends and find time to do nice things together
While sometimes I need to spend time chilling out at home and doing my own thing I also need to take full advantage of the fact that I regularly get to hang out with some lovely people. I sometimes worry about seeing my friends only when they’re supporting me, but rather than worry about this I just need to make sure we enjoy these times together.
• Acknowledge the emotional impact of Tourettes on me and on others and talk about it when it’s necessary
It’s not surprising that my tics and behaviour sometimes get me down, and just as it’s foolish to ignore the practical challenges my tics present, it’s silly to ignore their emotional impact. Focusing on solving problems is good but I also need to make room for talking honestly.
• Recognise the difference between my true feelings and the anxiety and obsessive thinking that can creep in when I feel stressed
I’m on a waiting list for some Cognitive Behavioural Therapy (CBT) to help me understand and manage the times when I overreact and the obsessive thoughts these episodes trigger. While I’m waiting for the therapy I need to remember that the overwhelming distress I experience at these times isn’t typical of how I feel most of the time, and just as my fits pass, this thinking quickly passes too.
• Practice meditation and make this part of my routine
My friend Kyle introduced me to some very basic meditation techniques many years ago and for the last few days I’ve been trying them before I go to sleep. I think putting some more time and thought into this could help me quieten my mind even when I can’t quieten my body.
My tics and behaviour can be funny and creative but they can also be exhausting and destructive. My personality’s present in my tics, but there’s much more to it than just my tics. In the same way, my feelings are present in my overreactions, but they’re not accurately expressed by them. My tics will have helped shape my character and my character has an impact on my tics, but the sum of the parts – me – is much more than that. I’m beginning to think the main person at risk of losing sight of this is me.
When I started writing this post I had tears in my eyes and felt overwhelmed by sadness. Now I feel calmer, and much clearer about what I can do to help myself. Things might get easier and new challenges may turn up, but whatever the future holds it’ll be easier if I use the power I have to change the things that aren’t working.