Will somebody listen?

This story was sent in by Baz, who although he’s had many and varied tics for 25 years, still does not have a diagnosis of Tourette Syndrome.

What is happening to me?

For a while I had seen some changes to my body. I was in my early teens and approaching the maturing stage of my life. Was this normal for a kid of my age? Well most of it was, but I had something different happening to me. I noticed that other kids of my age did not do the things I did and I wondered why; I could not understand what was happening.

I had something that made my body move uncontrollably.

The way it happened was strange, my legs would jump, my head would move from side to side, arms would suddenly jump, and I made some strange noises.

All my body had something going on. Things wouldn’t be so bad if it only happened a few times a day, but it happens constantly 24 hrs a day even when I’m asleep. It will wake me from a deep sleep. The only way that I can explain what it is like is when you have a dream that you are falling from a height and suddenly your body jumps.

This was hard for me to accept: I had to try to overcome what was happening or find a way to stop it. I tried to tense my body up so it could not happen, I tried to occupy myself doing different things like listening to music watching telly, reading, playing football, anything to distract my body from doing this, but it didn’t work.

My parents noticed it and at first it was ok but not for long. Then my life turned around: yes, I had a problem, everyone knew it, but what was about to happen was not right.

My parents started to tell me off for doing it, I used to say it was not my fault but they insisted that it was and if I carried on they would belt me and yes, that was what was going to happen, every day and night, I would get something thrown at me and shouted at. Still I insisted it was not me: it was something in me doing it.

As time went on the shouting got worse so eventually they decided to take me to see a doctor. He agreed with them. I still insisted it was not I could not control it.

But what does a kid know? So life went on: kids from school would take the micky out of me, teachers would make me sit on my own, my parents continued to shout at me. This affected me so much I would now start to disrupt the class. This carried on for all the time I was at school I would even be locked in rooms by myself, given the cane, slipper, have chalk and board rubbers thrown at me. It got to the stage that I was playing truant from school, as it seemed the easy way out.

I then got an appointment from the hospital to see whether there was anything wrong, but that drew a blank too. So it was concluded that all I had was a very bad twitch. The throwing and shouting at me intensified as the twitching got worse .By now most of my body would have a movement.

I was at the age where school should be helping me get ready for my exams, but instead they kicked me out. I confess I had something to do with that as I had assaulted teachers and kids, but for the last few years I had built it all up inside. Now was the time to let it all out, so I did.

I did not get anything out of school except hate. That was the way I was going to go: everyone who would laugh at me, or even seem to laugh, would be in for a beating. I got into trouble with the police so much for assault I don’t know how I ever escaped prison.

As I came to my late twenties, I still had what they would call a twitch but I still said it’s not me. So I decided to do something about it myself by making an appointment to see a doctor who would now start to treat me for depression and tried me on several kinds of tablets. “These should work”, he said. So many times did I hear that.

Well life went on yet again. I was now getting to the point where there seemed to be only one way to stop this. I tried suicide but not hard enough as I am still here. I was put into a hospital for my own safety: to stop myself doing any harm. I was in there for nearly two weeks and my parents would come to see me .I would try to tell them again and again that it was not me doing this. I didn’t know how they felt about it any more as they didn’t seem to want to talk about it.

By now the movements had taken control of my life, I didn’t know of a way out, but whilst I was in hospital I felt secure and away from all the things that would make me angry and low in myself. The way I dealt with anger was to fight. I knew this was wrong but when you’ve been through what I have, that was the only way to deal with it. In hospital everybody had their own problem and was not taking any notice of me. That felt better for me as I had found a place where I could not be hurt and I could not hurt anybody.

When I was 20 I met someone who would not judge me for what I had done in the past and would not look at me the way people did, who did not know what was wrong with me, when I first met her I tried to hold back the twitching, which I found very difficult if I was with her for a long time, so I had to do things like go out of the room and make various different excuses as my body was about to do the things it needed to do, I found it quite hard to hold it back for a long time as I found it would get worse if I did that , it was like an explosion going of in my body ,

I picked up the courage to talk to her about what my body did and she said she had noticed what was happening but it didn’t make me a different person to the one she met,

I also thought that I should talk to her parents about it and they said that they had noticed to and that it did not bother them either, which made me feel comfortable when I was in there company, this was the best I had felt for years, I was introduced to all her family and they seemed to have the same opinion about me which made me feel even better.

It was a few years later when I asked her to marry me, I was a little worried, but I had confidence she would say yes and her parents would also agree to us being married, so that is what happened.

At the time I had a good job and every thing is looking good so it took my mind off this problem I had, I bought my own house and had a new car which I never thought would happen, how could my life be any better???? We were married for 7 years and done all the things we wanted to’ money was no object to us, what we wanted we had.

But like the rest of my life before I got married there had to be a turning point and this was it.

Then came the part of my life when everything turned upside down: I lost my job, which I had held for 2 years. Jobs came and went, I just couldn’t seem to hold one down for more than 4 years. I hated the fact that someone could tell me what to do and I had to do it. I always reverted back to the only way I knew, which was to either assault someone physically or verbally. Then my marriage ended.

I was a mechanical engineer which involved using machinery, on one occasion I was working on a machine doing a quite important job, as I was doing the job my arm jumped the tool dug into the tube and out it came flying towards me at a great speed I was lucky not to get hit as I was working on my own in the factory if it had of hit me I think I would not be here, but it was a job I was told to do and I had to do it, which made me hate the fact even more that someone could tell me what to do and I had to do it , which in every case ended my employment with a company for the mistakes I had made due to my body movements,

Then my marriage ended I was married for seven years bought my own home and had 2 cars, we set up home hoping to have children just like any normal couple would, but with all the stress and anxiety that was inside me I just kept putting of having children thinking what would I do if I had a child that was like myself, would it be fair to bring up a child, the way I have had to deal with my problems, I don’t think I could watch a child of mine go through that, people used to ask when are you having children but I could never give them an answer because the only answer I had in my head was what if it turns out like me and then that would bring on all the questions and I did not want to put myself in that situation , anyway 2 years before our marriage ended my wife had what I call women problems but a little later down the line it was not to be just a women problem it was that horrible word cancer, it took hold almost over night and she was taken into hospital to remove the cancer but when they went to remove the area which they thought had the growth they were shocked to find even more inside her body it was a cervical cancer that can spread so quick, so they had to remove the whole of the womb included the ovaries, this caused big problems between us as she knew I would have liked children in the right circumstances but now it was all over no children was the answer and from then on the marriage was over we parted good friends and I made sure she carried on with her half yearly reviews as she was in remission for 5 years .

As you can gather my life was in a mess what should I do where should I go,

My mental state started to deteriorate and I had nowhere to live. I felt I wanted to lock myself away as then no one could stare at me. Wherever I went I felt everybody was staring and laughing at me.

So I left my hometown to go to a place where nobody would know me. I stayed there for only 4 months as I could not run and hide from this. Wherever I went people would treat me the same so I decided to go back home. All I wanted was to be treated the same as a normal person, but because people did not understand what was happening to me I was never treated normally in my eyes.

Whenever I went out to socialise I always needed to be at the back of the room with everybody in front of me so it would make me feel as no one was watching me.

On several occasions I have had people looking at me as though I was abnormal and I used to think yes I am abnormal and this would send me into a depressed state, if only people could be taught that what they see is not a problem for them but only for the person that has the condition that I have, trying to deal with it has been hard to do as I had no help from anybody, the movements occur so often that it has become so hard to say when it is happening and when it is not but I do know that most of my day I am aware of it happening , it is hard to hold things that you take for granted like a hot cup of coffee, hot kettle, saucepans etc when I sit in a chair I need to move to try and get myself comfortable ,eating dinner ,getting dressed having a shave you name it everything I do has a problem behind it .

I am now 37 seen many doctors tried even more tablets and even cannabis, although I used cannabis for a while it was not prescribed by a doctor and it did have an effect to the extent where it calmed me down and took me away from day to day pressures but I must stress that this is not an answer to the real problems that I had and I haven’t used it since, I had all the tests and scans cct, eeg, probes stuck to my body, everything possible that doctors could do for me.

I live a fairly comfortable life, I live with my partner who has been so supportive to me, she helps me in every way possible she also gave me the one thing I always wanted which was a baby and now I have a daughter who now takes my mind of what is happening to my body during the day,

When we first decided to have a baby I was a bit concerned that I would have a child that would have the same condition that I have and that worried me, should we not have a baby just because of what I think could be wrong with it, so when I went to see a specialist who I have been seeing for a few years I explained to him my fears, we had a good in-depth talk about the condition which I have, he told me that having a baby with what I have (if it is tourettes?), would be very slim if I had a daughter, as this is passed on to boys more often than girls, so then I had the advice I went to see him about , we took that advice and decided we would try for a baby .

Our daughter is now 2 yrs old and as every day goes by I look at her and wonder if she will be the same as me when she reaches her teens I hope for her sake she is not, as I know what she will have to go through and I will have to try and keep my head together for her, at the moment she looks at me when it happens and I have to do something which distracts her from what she has just seen, although she is my daughter and I know she will never judge me or take the mice out of me although I still find it hard when it happens around her , so now you might try to understand how hard it is to cope around strangers