Hospital Song

[catherinem]

It’s now 3.45pm and I feel soooo tired, I’m constantly yarning, I feel so worn, my tics have got the better of me, when I’ve finished writing this I’m going back to bed. I finally dropped off to sleep at about 4am last night after tossing and turning for what seem to be hours on end, I just couldn’t get comfortable my neck and shoulders just feel so heavy and painful after a day of almost constant neck twisting and cracking, shoulder hunching, left shoulder sniffing (???!!) and right arm stretching and twisting. My tics have become quite a bit worse this week; my eyes have taken on a life of their own as have my thumbs and fingers (???? Tourette’s syndrome is probably the strangest condition I can think of) For my eyes it’s a blast from the past, what they are doing is what they did during my teens, it’s hard to describe what they’re actually doing, it’s a combination of rolling, squinting and frowning. When I was younger I would have do it over and over until my whole face ached and I’d just want my eyes to pop out of my head. This would be a very dangerous tic to have if I were to do my CBT (that’s motorbike CBT).

However, I do have a logical reason as to why I’m suffering (I don’t normally like to use the word as it’s makes me sound wet and weedy, but I am at the moment) I’m off to hospital on Friday, I’m having a strange growth thingy removed from my tongue and I’m going to have to have a general anaesthetic due to my TS. I’ve tried to wriggle out of it, suggesting perhaps they gaffer tape me to the chair, blindfold me then just get on with it, but they haven’t gone for that suggestion, I’m going under! It’s only a day surgery procedure and usually it would only take about 15mins, but I think as soon as the surgeon saw me he probably thought he’d have a challenge on his hands. He did ask me if I thought I could keep still for 15 minutes, but he answered that question himself, “no, it’s a tricky one, we’ll have to give you a general anaesthetic”. This won’t be the first time I’ve had a GA, I had one when I had a laparoscopy to diagnose endometriosis, and it was a thoroughly unpleasant experience, first of being knocked out or whatever the terminology that doctors use is just horrible, the anaesthetist tried to distract me by being quite jovial and talking about Russell Brand’s radio programme and squirrels but I then had the sudden urge to try and escape as room began to spin and had to be held down. Waking up was just as bad, my TS seemed to be acutely aware of my stitches and I suddenly developed a horrible tic which involved clenching my abdominal muscles to create as much pain as possible. My other tics went through the roof and as soon as I could get back onto my feet I was constantly in the toilet washing my hands over and over again, not out of need to be clean and germ free but I was just compelled to do so. The abdominal clenching carried on until my stitches dropped out a couple of weeks later.

My TS has at times turned it’s attention to the growth on my tongue, that was one of the reasons why both my dentist and the surgeon have decided to get rid of it would be the best option before I do myself an injury.

So I’m off now, I’m going to make myself a cup of tea, read my Private Eye and have a nice nap.

[Iame]

It sounds as though you might have a seonsory issue going on too. The spinning room etc Catherine. I walked into a loo once that had a purple light in it, and it made me very dizzy and upset and of course only when I was told I have SPD earlier this year did it all make sense, every little thing clicked into place. Maybe you could ask doctor C about it, if you still see him!

I'm not sure what to suggest about the hospital, I get very frightened myself and have had to be held down before now to be knocked out, even for my teeth. I can just say to talk to the aneasthetist person before he knocks you out and tell him your passed experience and how it wasn't very nice. They can try and help you relax and put your mind at ease and if need be they can use different stuff to knock you out too that makes it feel a bit gentler when you go out.

[catherinem]

The room started spinning just after the anaesthitist gave me the injection and I was counting with him, so it was 10, 9, 8, ESCAPE, held down 7, blackout, wake up in recovery room. I was very relaxed, he was a very funny bloke.

[JayneeB]

(I might have already sent this because I twitched and I'm not sure if I hit the submit button, please excuse me if I have).

I know how scarey it can be. I had to be put out for an MRI scan last year due to my contstant twitcing, the anaesthetists were brilliant. She was chatting away to me and the next thing I was waking up in the recovery room, but luckily with no after effects. At the moment, my dentist is hoping he doesn't need to come near me with anything that involves needles or drills. I'm not having a good day today so am writing this with my head jammed up against a shelf above my computer trying to keep my head still so I can type.

What's even scarier, I have just been accepted for a DBS operation as my tics are so debilitating. Just waiting for a date now and on tenterhooks waiting to hear from the hospital.

Good luck for Friday!x

By the way, Catherine, I liked your 'Photoshopping', if you ever need any help with it, just let me know, I use it all the time.

[catherinem]

If you're taking part on the DBS trial you may have met Dr Rickards, was the picture a good likeness? lol

Dr Cavanna asked ages ago if I wanted to take part in his research that involved being put through an MRI scanner, but then thought it might be better at a later date when I could keep my head still. I'm quite particular about my teeth as I don't want to undergo any nasty treatments, but I tend to go a bit overboard as I've brushed my teeth so hard my teeth are now quite sensitive and my gums are receding. She does give me a scale and polish when I see her.