Today my social worker presented my proposed individual budget and support plan to the panel that decides whether or not they will fund it. She also explained the impact the new ‘ticcing fits’ are having on my life.
The panel agreed the support plan I’d drawn up with help and advice from Southwark Disablement Association. They also agreed some additional support overnight and at weekends, which will be reviewed in a month’s time.
I haven’t been left alone since the ticcing fits intensified almost three weeks ago. They had been happening less often since July and I’d been calling them “the dying fish” Since they started happening several times a day the constant support and care I need has mainly been provided by Leftwing Idiot. The new support plan will mean I can employ personal assistants and carers and both Leftwing Idiot and I can regain some of our independence.
The support plan is not the only prong of attack on the ‘ticcing fits’ I am also trying a medical intervention. I saw my consultant on Monday, in addition to the current emergency medication plan, which is staying the same. I’m trying a drug, I’ve not used before aimed at reducing the frequency of the attacks in the first place. We should know within a week or two if this is having a positive effect.
For me regular medication has previously either stopped working over time or the side effects have been more debilitating than the tics themselves. But I recognise that I’m now in an extreme situation and need to give all the options try.
The responsiveness over the last week of the agencies supporting me has meant that I feel much more positive about my immediate future. Once again I have begun to think about and plan for my move out of Leftwing Idiots flat and into my new Lair.