When I was at college I used to find seminars really stressful. When I wasn’t worrying about the noises and movements I was making I was battling to stay awake. Dark, warm rooms and the hypnotic whir of a projector would leave me fighting to keep my eyes open.
Today I experienced something that’s more stressful than trying to stay awake – trying not to cry. Or more specifically, trying to stop crying once you’ve started. As sob after sob rolled out of me I felt like I’d never stop.
It’s certainly been a tough couple of days and it’s been because of an accumulation of things:
1) A trivial argument with Leftwing Idiot that escalated because of my tics and overreacting
2) A number of impending support gaps that have left me feeling anxious about having the support I need, and mean I’m having to rely heavily on just a few people
3) The cumulative impact of relentless pain
4) The general frustration I often feel as the days get warmer and longer and I’m reminded of the time of year my mobility first deteriorated
Much of this blog reflects the funny or positive aspects of my life with Tourettes, but it’s important to write about days like today too. They’re rare, but horrible, and right now I feel utterly squashed.
At my lowest point this afternoon my relentless sobbing gave way to my repeated assertion: “I don’t want to be like this any more”, “I don’t want to be me any more”.
I felt exhausted by my tics, by the negative impact I could see them having on those around me, and by the unrelenting task of making sure I have support in place.
A few hours later and I’m feeling a bit more settled, although it’d be dishonest to pretend that the screen isn’t swimming a little as I write. People often comment on how exhausting having Tourettes must be. I’ve largely adapted to this and much of the time I don’t notice. I’ve also got used to explaining my tics and answering questions.
But what I’ve never got used to is the unpredictability of my behaviour. Things that don’t really bother me on an intellectual level often become much bigger than they need to because of my tics. This can result in distressing involuntary behaviours like lashing out at others, or biting myself. It’s something that can happen when I’m excited or happy too, but it’s always much harder to recover from when it’s linked to more negative emotions.
Each time this happens it feels like a little piece of who I am gets shredded.
This isn’t new. It’s something I’ve struggled with since childhood. One of the first poems I really remember was ‘There Was Little Girl’ by Henry Wadsworth Longfellow with the lines, “When she was good, She was very good indeed, But when she was bad she was horrid.”
Every day I try to keep these behaviours and what triggers them in check. It’s hard to see the impact they can have on the people I care about. I’ve devised all sorts of plans and strategies but they never seem to make enough of a difference. Losing control in this way makes me feel sad and humiliated.
I’m generally exceptionally well understood and supported and people show me seemingly endless love, care and patience, but I worry a lot about this running out. It’s something to which I don’t have an answer, and that’s a very hard thing to acknowledge.
Today I wished with all my heart that there was an easy fix. The reality, though, is that there isn’t and I’ll have to keep finding a way through as best I can, trusting that my friends and family will have my back as much as they can.
I know that honesty and open communication are essential, so hopefully writing this post is a step towards feeling more resilient.
To anyone else feeling lonely, sad or in despair I send my love and thoughts.
I’ve got everything crossed for an easier day tomorrow.
Hopefully all this crying will at least mean I sleep better tonight – when it’s time to close my eyes on today I certainly won’t be fighting to stay awake.