I felt strange this morning and I couldn’t work out quite what I felt, or why.
I didn’t feel ill, or tired, or gloomy. But after some reflection I pinpointed a little sadness with a bit of anxiety mixed in.
At lunchtime my thoughts returned to a familiar topic and I found the root of my strange mood.
I was thinking about my support arrangements over the next few months – particularly into the autumn and beyond. Two of my most regular support workers, Zoë and Will, are coming to the end of periods of study. Their lives and working patterns are going to be different from September, and it’s likely their work with me will need to come to an end or change considerably.
I feel sad at the prospect of not spending so much time with them, but excited about the new things coming up in their lives. I understand that routines need to change and I’m certain that whatever happens our friendships will continue.
When Zoë and I were talking about this the other day I said, ‘I hate change’, but I realise that’s not really true. It’s not change I hate – it’s uncertainty. I don’t know who’ll fill their places, or how it’ll work or feel, and that’s what makes me anxious.
The quality of the support I get makes a huge difference to my life, not just to what I can do but how I feel about myself. Will and Zoë both provide me with sensitive, skilled support which has seen me through some immensely difficult times. We’ve also laughed a lot!
I’ve had all this at the back of my mind for ages, but as we creep further into summer, the need to make firm plans is fast approaching. And I’m considering a radical re-think in how I manage my support.
At the moment I have a team of personal assistants who do a mix of overnight, at home, and at work support. On the plus side this means I get to hang out with loads of great people. But it also means I have to manage a complex schedule which I often describe as a never-ending relay race, with me as the unruly baton.
I’m thinking that when Zoë and Will move on it might be a good time to try a different system altogether. My idea is to have a single PA to support me all week at work, and someone else to live in and do the majority of my overnight support. With the right people this could work really well, but if things didn’t work out it could be really tough.
It’s a very unusual setup, and recruiting for such an intimate role can be a real challenge. The usual CV and job interview approach just doesn’t cut it. I’ve had PAs who are hugely experienced, great people or good friends, but with whom support just doesn’t work.
But when it all works well it’s amazing and I feel independent, safe and happy. Bad support, though, can be even more disabling than no support at all.
What I keep reminding myself is that I felt just like this when Bunny stopped supporting me regularly, and it was Will who stepped in to take her place.
I know that one way or another it’ll work out and I’ll get to know some new and amazing people, but for now though I’ll continue to enjoy my time with Will and Zoë and the rest of my wonderful team.