had a bit of an emotional melt down yesterday. In fact I had couple and they both revolved around the same thing – my support schedule. Since my ‘ticcing fits’ started happening every day nearly two years ago I’ve spent very little time on my own. I’ve either had a support worker with me, or someone very close by on call.
A pool of about twelve people provide this support and I timetable them in each month. Some slots are paid for from my personal budget and Access to Work, but at least fifty hours a week are unfunded and are therefore unpaid. Keeping on top of this timetable and making sure there are no gaps is a relentless but essential task.
Zoë had been scheduled to support me today but about a week ago she asked if she could cancel so she could go away. I was confident I’d find cover in that time so I told her that was fine. But finding someone’s proved tricky, partly because I’ve been ill and partly because lots of the people I’d normally ask are away.
I get stressed when there’s a gap coming up in the schedule and find it hard to concentrate on anything else until I know it’s been filled.
Yesterday, in the process of trying to sort out the gap for today, it emerged that a diary mix-up meant the person I was expecting tomorrow, wasn’t going to be available then either. I’m exhausted and fragile from being ill, and these mix-ups have been completely overwhelming.
When I’m getting stressed by situations like this, Leftwing Idiot always reminds me that ‘It always works out in the end.’ He asks ‘have you ever not been covered?’ Of course he’s right, and on one level it’s reassuring. I know if I’m really stuck for cover Leftwing Idiot or Fat Sister will always make sure I’m alright. But I also know this can seriously mess up their own plans.
And Leftwing Idiot’s assurance assumes being left without support is my biggest worry, when in fact the much bigger worry – that hovers over me all the time like a precarious boulder balanced on a mountain – is my fear of putting other people out.
I’m scared not so much of what a breakdown in my schedule means for my safety, but of what it means for the people who have to step in to fill the gap and of how thinking I’ve put them out makes me feel. I very quickly tie myself up in confusing knots of emotion at times like this.
Ensuring I have support is an exhausting chore and I often feel I’m a nag, especially when I have to keep checking with people about a particular day or a sudden gap. I’m sensitive to even a whiff of reluctance or hint inconvenience from my friends and family whenever I ask them, yet again, for help. And I find it extremely hard to articulate why this is.
The fact is it does always work out in the end, and I haven’t ever been left in an unsafe situation. But I often feel uneasy about the sacrifices the people I love have had to make to make sure this is the case.
However thoroughly I plan there are always going to be hiccups and gaps. I don’t expect this to change and I certainly don’t expect my friends and family to hide any inconvenience that helping me might cause them. But I do want them all to know that my preoccupation with planning stems from a desire to make sure everything goes smoothly, and that their needs are being met as well as mine.
It only feels like it’s worked out properly when I’m supported by someone who’s made a clear choice to do so and isn’t with me just because there’s no other option.
The important thing I’m going to try and remember is that while organising my support might often feel stressful, the time I spend hanging out and doing things with amazing people rarely does.
To everyone who’s part of this complex schedule, I can’t thank you enough for all you do.