A Ticnic and some skates ...

On Saturday I went to a Ticnic in Hyde Park. It was great. It was the first time I have ever been in the company of someone/anyone with Tourettes. It was fascinating and I felt totally normal and relaxed, which I don't think I have ever felt before. They were all really lovely people and I was pleased to have found the courage to go and meet them. I somehow managed to get myself on the quiet train cabin on the way up with the aid of Stray. This made me a little anxious, but it was ok.

The most exciting news of the day for me is the reason I was up in Hyde Park in the first place.... I was in London to buy myself a new pair of Skates from the Blue Room Store by Marble Arch.

And here they are. They are beautiful. I *heart* them lots. I start my lessons in June in London and I am very excited to be learning to skate properly and I am also excited to meet some new people. People that skate, so I think they must be cool people. I hope so.

NHS ignorance

I can't believe the ignorance of some so called NHS professionals.*

Today I had an appointment with the local Psychiatrist, a very experienced guy, Clinical Director of my local trust. So I held out a bit of a hope that he may know his stuff. Oh how wrong I was.

If any of you have read my post here, you will know I have been struggling with the symptoms of what I, my psychologist, my social worker and my friends believe to be Tourette's Syndrome.

Having done a lot of research on the matter, I have had many a light bulb moment while reading about it and for the first time in my life I didn't feel like a fool, I finally felt that I may actually have something real, something with a name, something that explained the way I was.

I was very anxious about today, moments of anxiety kept creeping up on me. I kept internally talking to myself, what was the worst thing that could happen? My psychologist and social worker believe me, they don't think I am making it up so why should he.... Breathe.

When I finally arrived and walked in everything shattered, just as I had suspected. At least I had come prepared for the worst.

I started by telling him how my friends and housemates had first mentioned it and how they had given me the research and findings they had done into it and how I had refused to listen, but then on reading the information it seemed to be like a light bulb moment and everything fitted. I gave him a print out of my post that won post of the week. He skim read it, handed it back to me and just said "Listen to me - you DO NOT have Tourettes, ok, now get this nonsense out of your head" .... I felt kicked down, silenced,... again. I felt angry, frustrated and decided that I would stand my ground. So I asked him how he had come to that instant conclusion? And then came the line I had been waiting for "You don't swear, no where have you told me that you swear or use foul language"..

I replied, "But only 8% of people with Tourettes actually swear" ... I could see he was getting a little agitated at my questioning him, but I had waited 3 months for this appointment I was not going to just sit back and leave feeling cross with myself for not getting everything I needed to across. He replied "Well I am the doctor here, and I have had the training, and as far as I was taught you HAVE to swear to have Tourettes". I told him that simply was not true. After being in the room with him a little longer he went so far as to admit that I clearly had a tic disorder and that he would refer me to a Neurologist.

He asked me where I had got this "silly idea" from, and I told him it was my housemates that had pushed me into seeing someone. He very condescendingly asked my housemates background, and what could they possibly they know? I told him one was a Doctor of chemistry and the other a computer programmer. His reply was "Well, hardly a psychology background then?". I agreed, no, but they were both highly intelligent and they were the ones that lived with me, not him.

He came round a bit toward the end of the appointment, and did admit that he did not know much about Tourette's except what he had learned a long time ago. He also said that maybe the diagnostic criteria had changed and he was not aware of the changes.

I am still simply astounded by his ignorance!

What hope is there in gaining social understanding in society for people with TS if even the professionals don't understand it? I feel very disappointed... but not surprised in the least.

*Not all NHS professionals are ignorant, just today's and I feel very sad about that..

An itch ... that is always scratched, yet never eased.

That is what it feels like to be me some days. Most days. I am yet to be formally 'diagnosed' with Tourette's disorder. I have denied it for years. To give the things I do a name is to admit that I do not control it. One of my greatest fears in life is not being in control of who I am.

The feeling creeps up my spine, across my shoulders, I can feel it and I wonder what will happen next. I am never sure. Sometimes it's just a twitch, others a huge squawking outburst. By the time I find out what it is to be, it's too late. It's done. I have embarrassed myself. I look like a fool. I am a fool. Again. I am convinced now that this is what leads to my constant anxiety, with me from when I wake up to when I finally go off to sleep. The not-knowing what will come out of me, what way I will find of embarrassing myself today.

I can suppress my "tics" ... gosh, tics - to give them a name feels wrong. It's just me, I must be making it up, I must have control, I must choose to be this way? I must make a conscious decision to be the way that I am? Can it really take 27 years to finally realise that maybe ... just maybe, who I am, is not all by my choice? Can I then be forgiving toward myself, can I then learn to like myself just a little, because it's not my fault? Can I truly learn to laugh at myself, rather than pretending to, simply because everyone else is?

I am happier allowing myself to be me, to allow myself to give in to the urges, to move and make the noises I so desperately want/need to. As a teenager I used to shake, almost constantly. Was this the pressure of controlling my desire to behave in this way? I was never comfortable, I could never relax.

I am terrified of relaxing, to relax is to give in to the unknown, to allow the urges to creep up on me, to take over me, to not be in control of myself.

I liked spending time on my own when I was young, where I could freely be myself. To be in constant company was scary, difficult, tiring. To hide in my room, to flick my hands, shrug my shoulders, turn my head, make quiet noises under hidden breath. That is where I was comfortable.

To be able to behave freely now is the biggest relief, just writing this surges emotions inside me. No more hiding. I still doubt myself, still wonder if I am making it up, think that I should just try really really hard. If I try my hardest, then I don't have to do it. But to be on guard 24/7 feels impossible.

I can be on guard whilst on the phone. On guard at an important meeting. Even on guard on a quiet train cabin. But when I am alone it comes back, and it comes back like a rocket.

To be on guard is not as hard as you might imagine. I have read comparisons by Tourette's sufferers to "trying not to blink" ... but I don't feel this fits for me. I would prefer to compare it to trying not to cough when you have a nasty tickle in your throat, or trying not to clear your throat when it has covered over with phlegm. Blinking feels too urgent, too scary.

The feeling that creeps up my spine, I can feel it coming, I can focus really hard on it and almost feel it being pushed back down. I carry on. No one knows.

Should I try harder ... or should I give in? Should I admit it's not my fault? Can I believe that it's not something I can just snap out of? I have been trying for most of my life to "snap out of it" ... how much longer must I keep trying?

An itch ... that is always scratched, yet never eased.

"Its just Badger and her funny ways .... "

It would appear that my "funny ways" are infact not quite so funny after all. Well maybe they are and maybe society just says that if you are a little odd. (Stray prefers to call it interesting) then you have to be grouped with the other 'odd' people. I however gain top of the class as I am a high functioning 'odd' person.

After many years of twitching, and playing back sounds from my environment at regular intervals whenever the need arises in me I have been given the badge TS.... (Tourettes Syndrome). Hmmm,... but I don't swear! Gosh, if I could count the number of times I have been told that I would .... well, I would run our of fingers for starters. Telling someone with TS they DONT have it because they don't swear is I suspect what makes people take up swearing out of pure anger toward peoples ignorance.

I watched a video of when I was 7,.. well actually it was my eighth birthday party but I prefer to say 7 because I am all for staying young. In the video I am certainly slightly peculiar. I watched it feeling like I was looking at someone else. That shrimp child certainly could not have been me. What I did notice however was that I had a definite blinking and head twitch even then. This made me think.... after being told by my housemates over and over that I have TS and strongly denying the claim, a little creeping thought of "maybe I do, and if I do its only a badge, it doesn't suddenly mean I am not me anymore" came into play. My psychologist believes that I do, however I have to see the psychiatrist again to confirm it. I am little confused at what a "diagnosis" infact means to mouse nor man. Or chicken, or peacock, or whatever animal I happen to take on when the sound crops up. I notice the little whistle I tend to slip in at the end of my noises is almost like some sort of socially acceptable disguise to clucking like a chicken. Like the whistle somehow takes away the embarrassment I feel at sounding like a farmyard.

Part of my denial of having TS was that I could suppress the tics for periods of time... but alas that too is common in TS sufferers. "Suppression of tics is possible, yet can lead to an outburst afterwards" - ding! (insert light bulb here)... damn. It seems that every get out clause I look for just impacts the fact more.

I am not sure why I am so desperate to deny that I may be a TS sufferer. I like to think that I am in total control of what I do, not that my brain is a little back to front. Having been through periods in my life where I hardly twitch or make sounds at all, I hold onto some hope that the urges will succumb over time. This was again another reason for my denial, I would strongly claim that I never ever used to be this bad. I can recall it being consistently worse since I was diagnosed with PTSD, which again makes total sense according to the TS Society.

Yesterday evening I realised that my noise mimicking was infact something to be admired and indeed a great skill. I like to think this means I am also a far better singer than I ever thought I was. I like singing. I am just a little shy. I got a new Apple Laptop yesterday (and yes it is very beautiful), when you start it up for the first time it plays a little space tune to you. I could mimic it perfectly, it was like magic. One listen and bosh I was that Apple making that very space sound. If you had closed your eyes you would not have known the difference.

Therefore TS is not something bad, or indeed a flaw with my brain. I have in fact been gifted.