The events and conversation that have inspired this particular blog post happened now about a week ago, I’m getting a bit lax in my blogging these days and as the Led Zeppelin song states, It’s Nobody’s fault but mine. This conversation got me thinking about the bio-psycho social model, in a nut shell this is the thinking that lead to the controversial Work Capability Assessment and the thinking behind the assessment criteria behind PIP (personal independence payment). The gist of this school of thought is that the way your condition manifests it’s self is related to how you deal with it. I would like to think that I have quite a good attitude towards my TS, I think that meeting and making friends with Tourettes Hero (known to friends and family as Jess) and Ruth (known to friends and family as ...err....Ruth) who have lately used their TS in positive ways, their attitude towards their TS has definitely rubbed off on me. Jess has book out any day now, amazon.co.uk/Welcome-Biscui... and Ruth has just created the video at the end of this post, I couldn’t say it myself!!
The conversation last week was between myself and my mother-in-law, she’s a hardy type, one of 13 children and deaf in one ear and has never told anyone (about the hearing that is) and her biggest complaint is when there’s too many people in her kitchen. This particular day I must have been walking on the wrong side of her and the cop was doing its usual thing whilst out and about. Usually her being completely oblivious to these obscenities popping out amuses my partner but today she was aware of them “do you have to shout like that?” “You do know it’s my Tourette’s?” “But you don’t have to shout like that though do you?” “It’s because I have Tourette’s” Luckily I’m in a fairly good mood and I’m not up for an argument so I just carry on and choose to ignore, or rather answer her questions tactfully, cheerfully and get on with shopping. Later on she makes a statement “Ever since you started with Tourettes Association (???!!) You’ve got worse, I’ve noticed it, why is that?” “I don’t know.” “Is there anyway of stopping it?” “You know I’ve tried some meds, but I didn’t really get on with them, they’re pretty horrible to take, the side –effects were bad” “Isn’t there anything else they can do? I thought you were seeing a doctor or something about it?” “ I was having habit reversal training and it helped a lot” “It didn’t stop it though” “But it wouldn’t, it’s just a way to help you control some of it and cope” “It doesn’t stop you swearing, can’t you stop that?” “Not really no” I forget some of the conversation but it led onto a kind of comparison between accepting that a wheelchair user would have great difficulty walking and a person with TS ticcing and that although it’s not the wheelchair user’s fault if they are unable to go to certain places whilst it would very much be my fault if I go thrown out of somewhere. I do tend to avoid places where it is quite likely that I’ll get asked to leave such as cinemas or concert halls, although that’s partly due to financial reasons, if however for example an old uni friend of mine recently went to a performance of a Mahler symphony recently in Birmingham, if a free ticket was dangled in front of my face and I was able to get back home without spending too much I’d probably take it and try out my tics in a concert hall. If I’d taken along some tic beating strategies such as knitting or playing a game on my phone or maybe the uber-geek untried strategy of taking a mini-score to follow might make the concert more peaceful (as much as Mahler can get) for the rest of the audience. Remember ticcer or not, it is not the done thing to clap between movements. This would be tricky as I have a clapping tic.
I often hear from other ticcers about the rudeness and general bad attitude of people they meet, for me those with the bad attitudes usually fall between a certain age bracket, around 14 – 40 years of age or there abouts, particularly the lower end. Older people are fantastic, they see and hear you tic, they look at you in horror and fear, my defense mechanism in this situation is unlike a cat hissing and bearing teeth I smile, put on the charm and tell them I have Tourette’s syndrome and don’t worry their just tics and try and put their minds at rest. There are quite a lot of elderly people who live around where I live, it’s more concern they probably feel when they see me, and they often ask “are you alright dear?” Bless them. The young ones however, if I ever have kids and they behaved like that in public, sniggering away, copying me I’d be ashamed, they’d get the rollicking of their lives. Whilst checking out Ruth’s videos on Youtube I can across a disturbing video featuring a poor woman being filmed covertly, I couldn’t imagine anything worse happening to me, seriously that would upset me and I would as they say probably “flip my lid”. This goes back to the mother-in-law conversation which did include the reactions to others, whilst if a person with some other random disability was the subject of abuse in public it wouldn’t be their fault, but if it happened to me it would be my fault. (???!!!) I am continually told by her darling son if I return home after some “incident” that it’s “what you should expect”. As a result of this “support” I am very much self-reliant, I go places on my own, I carry on regardless, I can’t lock myself away, I am a human being and I need interaction with others, I need to do things to feel worthy so as I say, “I plod on”. I’m also a firm believer of the old adage that if you want a job done properly, you do it yourself. I know I’m probably going to annoy some people with this blog post, but then there others, usually those without TS who say to me “but how do you do it?” or “you’re really brave” I seriously don’t get these statements, you just need to do what you do, I do feel that there’s more I could do (world domination perhaps?).
I have also recently come across an interesting document, but I’m not going to share it as already its upset some people from other disability groups as it is open to misinterpretation as it’s about referrals to IAPT (improving access to psychological therapies). Improving access to psychological therapies I am all for, Habit reversal training for me was a god send, not just teaching me to manage my tics but also just having a good chat with somebody who can help “sort my head out”. Contrary to what Dr Stern says in his blog tourettes-action.org.uk/res... (sorry Dr Stern to disagree) repeated visits to the nurse who did the HRT with me were a bonus of the treatment. I think a lot of ticcers would benefit from having their very own Kerry. But what this document was hinting at, I need to study it further, is that GPs due to the new way the NHS is operating are enscentivised NOT to refer patients for treatment and that perhaps certain conditions are “psychological” rather than physical CFS (chronic fatigue syndrome) my concern was is that many GPs may see TS as a purely psychological condition and if IAPT clinics are being run from GPs practices (I know my local GP practice does) many GPs may just refer somebody who presents with either TS (or something that appears similar) to IAPT, and IAPT from known experience can take many forms, one friend was offered a CBT course online, whilst I had an assessment over a year go, was prescribed Carbarmazipine and haven’t heard from them since. Whilst seeing a psychologist or therapist/counselor about TS on a regular (monthly ?) basis locally would be good, that’s if you could find somebody who like Kerry has treated countless ticcers and has in in-depth knowledge about how we tic (pardon the pun) those 6 monthly visits to a TS specialist are also essential, or at least access to one if need be, as fate would have it usually when I see him I’m what I usually describe as “flat lining” neither here or there, neither good or bad and just plodding along. The bit that got the backs up of many was that talking therapies via IAPT would be helpful towards pain management, in some respects, well from my own perspective the pain that I do have could be described as a repetitive strain injury, I wouldn’t categorically say this without confirmation from a doctor but it seems to tic (another pun) all the boxes and is attributed to certain tics. I have taken positive actions to try and combat this, doing exercises that the physio suggested, trying different painkillers, trying to habit reverse the offending tics. Now being a person who takes responsibility for her own actions I do feel guilty and lazy that these actions still aren’t working and despite my usual positive attitude towards my TS that perhaps the guillotine might be the best plan of action to combat the pain. This in reality would be a stupid option who’d operate the guillotine, who’d empty the basket and who’d clean up afterwards? The bio-psycho social model school of thought that this document has been inspired by plays on the guilt of stoic mugs like me who do blame everything on themselves. I have some silly notions when I was a kid that if I did something such as wear a new pair of socks I wouldn’t twitch and therefore wouldn’t get picked on (it didn’t work) or some landmark event would bring an end to the twitching (return to school in September and have a new form tutor) that didn’t work either. One thing that did help was humour and joy, if I was happy with my lot and handled my situation with humour, or complete indifference I wouldn’t be as entertaining to the bullies. The same applies in adulthood, if ignorant, rude strangers are fought fire with fire all that results is a bigger fire, however if fire is fought with water or sand (depending of the source of the fire) the fire will go out. They are expecting some kind of tantrum from you, not an intelligent, charming, funny person who turns their contempt into admiration. youtube.com/watch?feature=p...
