It’s Friday evening and I’m exhausted and sad. Ines, my support worker, is changing my sheets in the other room, Gogglebox is on in the background, and I’m fighting back tears, and have been all afternoon and evening.
As a warning to you, I’m not feeling very proud of, or positive about my neurodiversity at the moment, and I’m feeling annoyed and worn out by my own behaviour. If you’re in the mood for something more upbeat, this post or this post might be a better read.
Today’s been shitty, not because anything bad happened but because my brain created stress and tension where it wasn’t needed, and I just couldn’t move on from it. In just a few moments it went from a sunny, relaxed morning to a day full of stress and tension. One of the things I find hardest is this sense that everything can change so quickly and that ultimately the responsibility for that often lies with me.
It’s not something I want to talk to anyone about at the moment, but I thought I’d try writing about it, partly because one of the things that makes these situations hard is working out what went wrong. It’s as if the more I want to get the sequence of events and feelings straight, the more scrambled it becomes. Maybe it’s a bit like when something’s on the tip of your tongue and the harder you try to remember it the further away it feels.
If I had to draw a map of my thoughts and feelings today this is how it might look:
But if I had to explain it in a more conventional way here’s how I think it played out:
It’s a sunny Friday, I had breakfast in the garden and waited for Leftwing Idiot to come over for a meeting. The Touretteshero bubble is working out of the castle at the moment, until it’s safe to move into our new office.
We had a meeting about some creative projects, stopped for our morning break, and then re-started with the intention of covering a couple more things before lunch. This is where it gets hazy for me and hard to tease out.
Leftwing Idiot and I were talking about how I plan my blog posts, and the point at which something moves from being a personal post to more of a resource for others to use that we need to plan together. It followed on from an email he’d sent earlier in the week, so none of his points were a surprise and I felt we were broadly in agreement.
I know I felt embarrassed that we needed to have the conversation at all. This was a small feeling, but it was magnified through my tics and I’m pretty sure I said some impulsive and provocative things – although I don’t know what these were.
I think I was able to recognise in a slightly chaotic way that I was being stormy and that I thought I was going to have a ‘tic attack’. Leftwing Idiot and Claire were quick to help me, and they handled the episode in a relaxed way with lots of humour.
We were outside in the sun and I felt safe and well supported. I particularly remember us all listening carefully to the sounds of the day: my neighbours upstairs, in the distance the noise of a wheelchair ramp on a bus being lowered, the birds in the garden. This is something I realised I do very rarely and it’s a positive memory I’d totally forgotten about.
I think I did tic some provocative things during the tic attack, some of which related to the discussion we’d had earlier. But at the time I felt that they were understood as tics. Afterwards is where I think things went skewy.
To try and reflect on what happened I’ve just paused in writing this post and instead had a go at writing down what I was thinking and feeling at the time of the incident, I also tried to imagine how it might have felt for Leftwing Idiot, Claire and Trina.
I found this exercise really useful, but I don’t think it’s appropriate or helpful to share this in its entirety, so here’s just an extract from the start, as an example.
I’ve never tried going through an incident in quite this way before, where I consciously step through my thoughts and feelings and then think about how it must have felt for those around me.
During episodes like this I tend to focus on the trigger, the original point of tension, particularly if this is something minor. I want to wind the clock back and make everything OK instantly, but that’s obviously not how emotions work.
I also feel enormously impatient with myself. It seems as though whatever I try, however many plans I write, I still struggle. The hardest bit is always witnessing the toll it takes on people I care about.
This incident did help me realise some important things about support planning. These are:
1) There’s no point in creating a plan and then not sharing it with those around you
2) The middle of an incident is definitely not the time to share a new approach
3) For me, plans to manage challenging situations are most effective when someone leads me through them
4) It can only ever be me who’s responsible for my feelings and responses.
I’m not giving up on my DAVE plan but I will take time to go through it with my support workers and continue to reflect on ways to make situations like today less likely.
I trust in my friendship with Leftwing Idiot and know that we’ll resolve this. The challenge for me, though is not rushing this process and giving him the space he requires.
It’s hard though, and while writing this has definitely helped, I’m left feeling worn out, sad and isolated.
I know that there are factors that make these situations more likely. The fact that it’s Friday and that we’re all working out of my home is relevant. I get tired as the week goes on and Fridays are notoriously tricky for me.
Most of the time having the team at the castle is lovely, but when something feels tricky or tense there’s nowhere for me to go and without any sort of debrief or positive moment afterwards the tension tends to hang in the atmosphere.
For a long time, I used to feel frustrated with myself because of my tics and thought that if I just tried hard enough, I should be able to stop them. Nowadays though, I understand that there’s no shame in not being able to stop my tics. But there are some aspects of my life and behaviour where the idea that I should be able to control myself still holds strong.
When I started blogging a decade ago, I promised myself I would be open and honest. I find these negative aspects of my behaviour hard to acknowledge, but it feels just as important to write about them as to write about the times when my unusual neurology makes me laugh or helps me create something new.
I also hope that by making this part of my experience visible, others might avoid some of my mistakes or at least feel less alone.
Now this is written I’m going to work very hard to realise the final stage of my DAVE plan – enjoying a new phase.