I’ve been on holiday in Spain with Fran for almost a week now. Tomorrow will be our last day and naturally my mind’s started to shift to life back home, particularly the week ahead. When I looked at my support schedule it was worryingly empty, with many of my regular team either away, busy, or moving on.
Ensuring that I have someone with me 24 hours a day is a big administrative and logistical task that I often describe as being like a never-ending relay race where I’m the baton, and I very definitely don’t want to be dropped.
If I don’t have support it’s more than just me it impacts on. Leftwing Idiot, my colleague and one of my closest friends, usually ends up stepping in, or I have to call on Fat Sister and King Russell who both have busy jobs, and a baby to manage. This puts a big strain on us all, both practically and emotionally. It’s amazing that I have their on-going support, but I’m always keen to make hanging out with them a choice rather than a necessity.
In the middle of the night, tired and unable to sleep, the situation seemed bleak, and the impending gaps in support felt cavernous. There was obviously nothing I could do about it then, so to calm my bubbling mind I started to draw. I didn’t really plan to do it but I started mapping out my support network – my friends, my family and my PAs, in London and elsewhere.
When I looked at the final drawing I no longer felt worried. Instead I felt incredibly lucky to have such a brilliant web of support. I’ve left space around the edge for new people to join my web, and I definitely do need new PAs. So, if you’re London-based, confident, have a great sense of humour, and have room in your week for a new part-time job, do get in touch via the Touretteshero website and we’ll send you more info.
Seeing my support laid out in this way made me feel much more settled and I was soon able to get back to sleep. Today I’ve worked at filling the gaps in next week’s schedule – Leftwing Idiot will support me on two of the daytimes, and Lily the other two, and I’ve emailed the care agency I sometimes use about the gaps in my overnight support.
At the moment I’m very much managing week to week but I’m hopeful this will change as soon as I get a few more people in the mix.