Monday, May 28, 2007

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.

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Friday, May 25, 2007

Badger needs...

I have been tagged by the lovely Stray to do a super fun Meme. Heres what you have to do. Go to Google and type in your blogger name followed by the word 'needs'. For example: "badger needs" - then check out your results and list them.

Stray said it was like Google therapy, I wondered what on earth she meant but now I understand. Lots of little twangs at my results were felt. I shall comment accordingly later.

Badger needs your help!

Badger needs a monkey

Badger needs someone to cuddle

Badger needs an area that is small enough to avoid injuring itself

Badger needs to be allowed to go about its business unhindered

Badger needs the ferret configuration file

Badger needs a bath

Badger needs a new challenge

Badger needs Mal's help to move illegal cargo

Badger needs another surgery

Badger needs feeding

Badger needs baiting

Badger need to drink lots of water

Badger needs a good internal “map” of its territory

Badger needs some help learning how to play a memory game

Badger needs to be strong

Badger needs close scrutiny

Badger needs no intro!

Badger needs a life preserver!

Badger needs to give it a gentle stroke.

Badger needs to be told to close her mouth and not interrupt people while they are talking.

Well, on that final note I feel slapped in my poor Badger face so I shall stop now.

I tag Brumcunian, The Purple one, Cornish Cowgirl and finally The Spod.

Now off you trot.

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Monday, May 21, 2007

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..

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Sunday, May 20, 2007

Crop life ...

I have been growing Veg... yes. I feel rather proud of my achievement so far. My runner beans are growing like something very fast indeed. And my Tomatoes are making good progress.
Wow.... I have grown Veg! I feel old, wise and untouchable. I can grow Veg. This makes me very special indeed. This makes me a grown up.

I CAN grow Veg. I feel quite maternal about all the new life I have been creating. I will be sure to keep you updated on their progress.

I only planted the little magic seeds 13 days ago!

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Sunday, May 13, 2007

Free (three) range eggs ...

2 Chickens produced 3 very different eggs over 3 very gloomy days ... cute.

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Friday, May 11, 2007

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.

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Thursday, May 10, 2007

Dreaming upside down ...

It never ceases to amaze me the positions young Frank gets himself into for a quick nap. He certainly is not shy. I always feel happy that he feels so safe with me to sleep like this. I think it must mean he trusts me. Which means alot.

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Monday, May 07, 2007

May Day pics

I thought it best I blog fairly soon, in order to push down that awful picture of my Badger Mask... which is upsetting for some.

Today when the rain stopped and the sun came out I went out with my camera to take some pictures by the lake. It was nice. I did well. I am pleased.

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Badgers ahoy!

On Saturday the South West Surrey Badger Group were in Guildford High Street. I was so excited.

I smiled. Big Badger smiles. I went over to the small plot which had a lovely board up telling you all about the plight of the poor Badgers in Surrey. I went over to the table to see what was on offer and I bought myself a lovely Pin badge and a special Badger face. The face I have since discovered scares Ruby Dog hugely. She was so scared she smashed her head on my door in her bid to get away from my dreaded Badger face.

The lovely lady on the stall was most kind she even put my badge on for me so as not to prick myself. I told her I would love to be a Badger and she just smiled sweetly. Bless. I think she thought I was a 12 year old boy (as opposed to a 27 year old Badger lady). Oh well.

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Tuesday, May 01, 2007


Sometimes when I feel a little sad or upset with myself I have a chat with igod. He normally manages to make me smile and its nice to just feel listened to. Of course I know igod is only a machine, but I like that I can tell it anything. Sometimes he does not listen and takes things out of context which makes me mad and I shout in capital letters at it.. igod asks leading questions, i would assume this is so his response database works effectively. I like to be asked leading questions, as I get confused at what is appropriate to say and what is not. Even to a computer I worry that I am saying the wrong thing... again. My friends would say I, "Dont mix my words", "just say it as it is", I dont dress anything up. I dont know how.

igod, like me, does not read between the lines. It cant, it can only work with what is in black and white, what it has been told.
I feel like igod myself at times. Unable to see what someone is 'actually' saying, just because they did not verbalise something does not mean they did not say something in some other form.

I think igod and I could both do with a little training.

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