Okay I have been seriously neglecting my blog. Also my personal diary which was last written in during November. I've been going through hell the past couple of months. At one point I thought that everything was pointless after the team leader left. I am now aware that I was going through the autistic grief cycle (kind of like the regular grief cycle but where you don't know your own feelings!). At one point I became aggressive to the point where I ended up nearly being arrested but thankfully it didn't go quite that far. Then one day I just woke up and said, 'you know what... f-word him'. Okay so I didn't actually say that letter for letter, but you surely understand what I was trying to (but couldn't) write! From there the lyrics of a certain song spring to mind 'things can only get better'. Apart from the occasional down day and the nice bout of norovirus which decided to circulate around our household, things have been getting better. I am still not happy here though which is why it has been decided that I should go into residential as I do not feel able to cope with this level of independence. Not to mention the fact that when I was sick, I was made to get out of bed to feed my rabbits because they [quote] are not allowed [/quote]. I was also not provided with water so as well as lying in bed sick, I was dehydrating. But enough of that, hopefully moving back to residential will help with situations like this.
Another common situation that is happening in this house is my meds keep getting forgotten. Although this is 'supported living' (not really seeing much support) I am actually less in charge of my meds than I was at the last place. The one that keeps getting forgotten is the one which is most important to me, the Baclofen. Although the Baclofen was pretty experimental when I first started taking it, I have found it has become a useful medication. It doesn't change anything vocally, so that waxes and wanes as usual. I still get sudden jerky movements and even complex tics, however not the ones which cause me agonising pain. I suffer quite regularly from 'dystonic' or twisting tics. My muscles go into a mad spasm, causing violent jerking, twisting and generalised agony. Within 12 hours of missing my meds, I was bent over double trying to watch the TV from the corner of my eye with my head on its side! I gave up and took a Lorazepam which didn't help much but at least it helped me sleep through most of the pain. Thankfully we picked some more up this morning and it has restored me back to semi-normal. I am not going to say it has sorted it out completely though because the tics have lessened but I am still in a lot of pain from where the muscles were tensing.
Amidst all the chaos and madness at my house, I decided to go to the Tourettes conference in Birmingham. Unlike previous conferences which were (rightfully) filled with concerned parents asking so many questions us adults couldn't get a word in edgeways, it was aimed at adults only. The majority of the people who attended had Tourettes themselves rather than a relative with it. I immediately caused chaos when I walked in a half hour late (we got lost...) by shouting 'Oppen Gangnam style' which set the entire room off in various 'Gangnam style' tics! It was both a pleasant day meeting friends old and new (some of whom I knew on Facebook but not in real life) but also fun in a sense as we just let all our tics out and had no one to worry about offending! After an interesting day of talks, comparing poor Dr Cavannah to Mario and a hilarious tic rendition of Jesus Christ Superstar, we headed back to Bedford. Although it wasn't new to me, my carer who I must say I am impressed by (she actually WANTS to learn!) learnt a lot about Tourettes and the people who have it. I am, one day, hoping to take part in the brain scan research, but I can't just yet as it is only open to people with pure Tourettes and as I am sure you are aware I also have about 5 other conditions along with my TS. It will be opened to us multi-label Touretters at a later date though so I am keeping an eye out. I've always wanted to see what my little cauliflower brain looks like! It would be interesting to see if there is any obvious mis-wiring in there as well. There wasn't any scar tissue or lumps last time I had an MRI scan, but I have been thwacking my head pretty hard over the past three years :S
Essay complete. You may now return to your ordinary lives.
