One of the things that is still difficult for me to come to terms with is how much I need to pace myself. I think I can cope with things; that I should be able to cope with things. The truth is that I can’t do everything I’m trying to do, particularly when I’m putting myself into situations that are overwhelming from a sensory perspective.
This weekend was a good example. Normally I don’t plan to do anything after my therapy session; driving home is about my limit and then 90% of the time I’m so exhausted by the session that it wipes out the rest of the day.
But I thought it would be safe to plan something enjoyable. Like going to the theatre.
It didn’t quite work out as I’d hoped. I hadn’t been to the venue before; it was crowded and I didn’t know where I was going. The volume was turned up too high and the acoustics were not great. I thought I was going to have to leave. Stubbornness kept me there, but it was a test of endurance rather than a pleasant afternoon.
I’m finding this happening more and more. Things that I used to enjoy – and still do, in many ways – have become overwhelming. I don’t know whether the world has just become louder, or whether I’m noticing it more now I’m not concentrating on putting on my own act.
I find myself increasingly reluctant to leave my home, where I am safe, where there is nothing to overwhelm me. I now have a proper sensory area set up, as well as different lighting options in most of the rooms. This makes me feel more secure, and I am glad there is somewhere that I can be safe and calm.
But at the same time I worry that I am retreating from the world too much. That I am becoming increasingly stressed when I am not at home; increasingly unable to cope with the pressures of daily life outside my front door.
If I can’t cope with the pressures, I won’t be able to keep the sanctuary I have created.
I feel stretched beyond breaking point. But I am safe here. I am warm and quiet. The patterns of the light are almost hypnotic.
I need this place away from the world if I am to have any chance of coping with real life. But the more comfortable I become here, the harder it is to leave this room.
Not for the first time, I envy people who are strong or brave. I am neither. I carry on simply because I don’t have a choice.
But tonight I am sitting here watching the lights dance. Listening to the music in my head that I can’t quite work out how to notate, but that both lifts me up and makes me cry. And that is going to have to be enough to get me through for now.