Yesterday was tricky. I was doing a new thing that I’d never done before, and which necessitated me being around lots of noisy children for a prolonged period of time. (Tap dancing in a showcase, if you’re interested.) When we got home, I told my husband that he was not allowed to talk to me until I came out from under my duvet.
Up until now, my duvet has been pretty much my only coping strategy, and as life is going through a difficult phase I feel like I’m using it all the time. Often I get home from work and go straight to bed. I’ve been eating meals in bed. I’ve been working in bed. It’s good, because it does help me feel better, but it’s quite limiting, and it’s affecting my relationships with my family, particularly my children.
We had planned to go out for a family walk yesterday afternoon, but for one reason and another I ended up walking quite a lot of it by myself. I was feeling stressed out and overwhelmed. My brain was going at 100 miles an hour. I started to wonder – had I remembered to take my antidepressants this morning? Was I due a replacement hormone patch? Why on earth was I feeling so bad?
It occurred to me as I was walking that whenever I feel like that, my default position is to assume it’s because I’ve forgotten my medication. Often I have. I take it, and sure enough, I’m feeling better within a day or two. The times I don’t feel better again, well, maybe it’s taking a bit longer to work this time. But yesterday, I had taken my medication, and I wasn’t due another hormone patch – which forced my thoughts in a new direction. If it demonstrably wasn’t that I was simply lacking in medication, then there must be another reason for how I was feeling.
I quickly realised that my short stint under the duvet hadn’t quite got me as ready for being around people as I had hoped. I was overstimulated, and stressed out. I have one particular piece of music that I can listen to when my brain needs untangling (it’s this, by the way) and I decided I needed to stop, right there, in the middle of the path, not caring what anyone else thought, and listen to it whilst staring at the trees. So I did.
As I started to feel better, my mind wandered. This wasn’t a one-off. I feel like this a lot of the time, and have done for as long as I can remember. Can I really put it all down to not medicating myself properly?? Could it be that I have been experiencing sensory overload, which – unrecognised, and unmanaged – I have turned in on myself? Although I am autistic (diagnosed only recently) I don’t really stim much; growing up as a teenage girl who didn’t really fit in, it’s not really surprising – I would have done anything to avoid standing out from the crowd. But at what cost? Stimming is really just a way for us to get ourselves balanced again, when one or more of our senses is a bit out of whack. If I was in the habit of regularly stimming, I wondered, would that have provided an outlet for the screaming in my head? Would it mean that I wouldn’t need to spend so much time in bed? Maybe I could manage my feelings a bit better throughout the day, rather than storing them all up until I just couldn’t cope any more?
Looking back at my life, I see the pattern repeated over and over. I push myself to the limit, and then collapse in a heap. After my GCSEs I was ill for months, and then had chronic fatigue syndrome for a further two years – which only went away properly once my A levels were over. When I started work as a teacher, I could make it through until about Easter, and then invariably I would have to take at least two weeks off school because I was so ill and took so long recovering. And even now, the only way I was getting through the week was by being in bed every minute that I wasn’t at work.
A new thought started to form in my head. What if I could find another a way of regulating myself? Could I actually do a few small things, throughout the day, that would help me to cope and mean I had enough energy left to play with my children when I got home?
As I walked, I tried a little experiment. I tried flapping my hands.
It felt good. It felt like there was a lot of energy in my hands, once I’d flapped them, and a bit less of it bouncing around my head. I tried tapping my fingers against my thumb one at a time. It made a nice little pattern, and that felt good too. The pattern became the underlying beat for a song that was going round in my head. I began to feel calmer. All of the energy that usually roared around inside my head felt like it had a bit of a place to go, for the first time. I felt like I could stop and wait for my family to catch up. By this point we were headed back to the car and I saw a Christmas tree outside a pub, with lots of flashing lights. I stopped to look at it while I waited for them. It was lovely. Looking at the lights made me feel calm.
I’m going to experiment with stimming, and see what difference it makes. It feels a little odd to be doing it deliberately, but when you have been masking your autism for thirty seven years I think sometimes you do need to be a bit deliberate. Masking has become a habit. Turning my overload inwards has become a habit. I need to see what other options there are.
Today I’ve been playing with a squeezy ball that I originally bought to put in the kids’ stockings. I love it. I have been experimenting with different ways of using it – running it over the backs of my hands and my arms, for example, but I like it best on the palm of my hands. As I’m writing this I’m stopping every couple of sentences for a squeeze; interestingly, as I’ve gone on the squeezes have been shorter, and there’s been more time in between them. I have also put in a massive order at Stimtastic, and I am really looking forward to trying out my new stim toys and jewellery.
It hasn’t even been a week since I got my diagnosis. This feels like it’s going to be quite a long journey.