I’ve described before how much worse my ‘ticcing fits’ get when I’m not well. They become more frequent and intense and I need constant care. This puts a huge additional pressure on whoever’s looking after me.

Last time this happened Leftwing Idiot wasn’t well either. There was a point during one of many extreme fits that he wanted to call an ambulance. Later he said this’d been largely because he’d felt so exhausted he’d been desperate to hand over responsibility to someone else.

I’ve just had an email from my social worker to confirm that the panel who decide each person’s support arrangements have agreed additional funding for me so that when I’m ill I have a budget for the extra care I need. This is a huge relief.

Part of the problem in the past has been that I have an Access to Work support worker every day I’m in work, but not on days when I’m not. So if I’m ill, it’s a bank holiday, or if I want to take annual leave, I’m stuck.

The additional care budget agreed today means that as well as being appropriately supported if I’m ill, I’ll also be able to arrange extra help if I’m on holiday.
I no longer feel terrified of catching a cold or stressed by the logistics of planning for time off.