My strategies failed me today.
I suppose it was always going to happen at some point. And today wasn’t really a surprise – I am really, really stressed about something I can’t do anything about for a while, plus a bit unwell. It’s not a good combination and it didn’t take much to push me over the edge.
I’m trying to think positively and just be pleased that the strategies I use are keeping things under control most of the time.
Just not today.
Today I had a full-blown meltdown.
Which is never a pleasant experience. But it’s even worse when someone who’s not aware of my condition or what’s happening walks in on me. (Another positive thought: at least it wasn’t when I was at my worst.)
They tried to help. But the thing is, the normal things that you might do to try and help someone don’t work when I’m having a meltdown.
I can’t speak, so can’t explain what’s going on.
I’m already anxious and scared, so adding a stranger to the mix just escalates the situation.
This means that unless someone knows what they’re doing – and interventions are very person-specific; what works for someone else won’t necessarily work for me and vice versa – there’s just no way that they’ll realistically be able to help. Better just to leave me.
So I’ve now written a note to store on my phone, explaining what is probably happening. And I’m trying to get a new rule into my brain that if someone who isn’t ‘allowed’ to be there comes into a room when I am using it to manage my condition then I need to show them the note.
But I don’t always think clearly in these situations and, if I’m in the middle of the meltdown, am unlikely to even be aware of what’s going on. So if someone catches me at the wrong time, I won’t be able to show them the note and then this is just going to happen again.
And I think this is the cruellest part of my condition. The erosion of dignity and self-respect: the lack of privacy. Having to explain things that I would rather keep to myself. Having to renegotiate relationships and work out, after all this has happened, who I actually am.
Life was hard when I was trying to hide that I was different. But in many ways I think it’s actually harder now. I still hope that eventually things will settle down and I’ll be able to adjust to a new ‘normal’. I just don’t know how long that will take, or how painful it will be on the way.