Silence - Friend or Foe?

"MUM!, Carwen won't speak AGAIN!"

1993 aged 16yrs and two years into being  secretly being stalked by Frog Face. One of the ways I coped was to write a diary in which I would never acknowledge Frog Face. I hoped in some way that I could literally write Frog Face out of my life and forget.

14:08:93

...Last nights dinner was another "take the piss out of Carwen event", I have now got to the stage where I can just shut off. I can hear them calling me 'deaf and dumb' because I never answer or defend myself against their insults. It does not matter any more as nothing can hurt me {as when I was younger} when I  made myself oblivious to physical pain, I can now shut down mentally. I have found fighting back never works and you only end up getting hurt twice as much. As the verbal abuse keeps coming you know inside you have won because you remain emotionless......

18:09:93

.....You know sometimes you wish something drastic would happen and then 'something' would effect you and maybe you would be 'seen'. Then when something drastic happens to you your not sure if it is drastic at all. I mean one minute all you want to do is cry forever and the next its just not reality. You seem to be shrouded in a haze of numbing peace. Maybe this is what people mean when they say in drastic situation "you just get to a stage where the tears dry and you just have to live on as best you can"........

06:10:93

.....Oh I don't know everything is upside down. I want to scream and kick till I'm blue in the face. I want to be alone but I feel so inhibited when I am. At school  sometimes there are so many people around all talking and making the air clammy and hot. I put on my walkman but although it helps me to forget I'm with people - I can't.   I want to run away and be cold, to breath cold fresh air, to be in some quiet place where I won't see anyone and they won't see me. I would put on a song and dance without worry. I'd be in my world singing at the top of my voice and dancing circle after circle. The air is crisp and dry, the sky heavy with light. My eyes drink in the beauty of my world into which no one else can come.  I am  without the thickness and stuttering, I am without having to try and speak properly.  It's impossible and I want to cry, I cant be alone.

I have an aching in my belly I just don't want to 'Be'. I spend most of my time in my fantasy world were I can escape. The thing is I'm spending more and more time there. It scares me as I know its wrong but I just need to be there and although I'm physically not free there - I am. Is that wrong do you think?....

Having never told my dysfunctional family anything I had gone through, my behaviour to them was really hard to understand. Each of us lived and survived our own stories of coping. None of it was "normal" and we each lived extreme confusing unseen lives.

12:10:93

....Quotes from dinner tonight referring to yours truly.

 "I hate you so much x2"....

"I really passionately hate you, you are so annoying!"......

 they speak to each other.. "I know I get that feeling when I look at 'It'... 

"mind you I never speak to 'it' (laughing) "I'm glad I only have to see 'it' at dinner"...

I'm feeling a tad pissed off! well no that's a lie I feel nothing to them. I am nothing to them. Its stupid to think I ever will be. The thing that scares me, I mean really scares me is that I guess because of me having my own world of silence and the three months of hiding that I  did over the summer I think I may have forgotten how to cope. I mean I used to go a few days without speaking or seeing anyone. I could always integrate back when I had to, now though I am more paranoid than ever If only I could keep this wall around me for longer; I just get so terrified of people. Crowds are becoming another problem, I can only speak to one person at a time and I can't cope if lots of people are talking.

In class I freak if the teacher asks me a question or looks at me. The other day I had taken soup in a flask to school and it must have got smashed inside on the bus. During history I took a sneaky swig and ended up with a mouth full of glass. I couldn't do anything about it so had to sit there for twenty minutes for class to end and go to the loo.  I generally feel ugly and pathetic, I don't know what to do. I can't tell anyone as there is no one to tell. 

I'm writing this because on my journey into discovering, I used to get so confused until I realised there is a difference between people who have experienced a trauma and those that grew up within trauma and have had their whole character / world view grown in it. 

I hear people comment on how they wished they could go back to their twenties or teen years as if the years of age are robbing them. When people talk about 'getting back to what they used to be' prior to the experienced trauma, I used to feel like failure until I understood I didn't have anything to 'go back to.'  I have never felt robbed by the age thing and feel every year I live is better & more free than the last; I am relieved I'm here. Ironically it's not because the years have made me stronger, it's because I am now safe and it's in that safety I am able to finally shed my strength, shed my walls and know I am still loved accepted and 'seen'. #CPTSD.

Honest

There are times I need to get drunk to make it stop! 

"Make it stop what have you got, that day in, day out, they think you forgot?"

I reply in shades of hopeless blue, it's the past it's  the history for you.

But this past you thought I forgot it sits up and bites me on the bum a lot!!!

"What but you have forgot!!!!!  it's been years you must not be so shameless and weak!!!!!"

I reply "my years of tears in my bedroom I'll keep, incase  I freak". 

Be near me lord, please be the hand in which my drunken  soul and I safely land.

For there must be a place much further on were, my imperfections no longer are shone.

A place were in the cruel light if day my 'inner child' can play.

Dear lord please don't make me the child you forgot, when you gave out grace to forgive the lot!!.

 The sin you see was not even mind it was afflicted on my body, you made so fine.

So dear lord forgive me the drunken, whole friggin lot! It's in you I put the whole bloody lot!!

Dedicated to beautiful R.

December!!!!

Christmas month... Thought patterns...

November... Anticipation of December intense intense intense intense.....

December..... Try and plan intense intense intense....... Want to get it right..... Intense intense intense intense ......... Must not forget first lists made...... Intense intense intense.

Dates start flying around, dinners drinks, being social.... Put in coping plans for each as I would like to enjoy them.... Intense  intense intense intesnse......

Cloths for events, I can't wear my usual. New feelings, new fabrics.... Intense intense intense....

Loads of lights feed my overstimulated brain cells, loopy, loopable, looping songs.... EVERYWHERE!!!.... Intesnse intesnse intesnse......

You get my drift... Present buying, family, friends, receiving gifts, trees, wrapping paper, Sellotape, hiding presents, stockings, eating to much, drinking to much, being mum, being mate, being mrs....... Intesnse intense......

You make think I don't like Christmas but you would be wrong. I very much like the values of Christmas. I very much like spoiling and showing my family and friends how much I appreciate and love them.

(But the love in my belly is hard to interpret into anything tangible). Living in my head means, Christmas, in all it's wonderful colour is a little bit like being a driver in the grand pre taking a hair pin bend...

woooooooshhhh, pre plan anticipate, take in enviromental conditions, assess road surface, apply correct throttle and brake, keep an eye on the other drivers woooosh!!!!! go into the corner reassess all variables, take corner, assess again, power out!!!! Wooooosh... assess straight.... take in all variables ...... Speed ..... Road surface.... Throttle.................

Love you all appreciate you all very much and I'm excited to live 2015 with you all!!!! Merry Christmas.🌸🌸🌸

Connections

I often wonder why I write these blogs?

I wonder what the purpose really is?

Some have asked me "but that's all behind you, why drag it up?". Some consider me to be attention seeking and making trouble. The phrase 'let the past be the past' can leave you feeling weak and stupid.

Originally I wrote because I wanted to learn how to write. A magical thing began, a blessing. I began to learn the peace of connection, explaining and giving meaning.

You see its all well and good if your past is in the past but for me my past was / is very much in my present, I am going to write quickly now in case I end up in a muddle. 

Imagine your a maths professor. Now imagine there was a maths formula you could not understand. You mull it over in your mind and think about it day and night (sometimes even when you don't want to) it haunts you. You seek solution to the formula by chatting with others who may help you read and research similar maths problems. You keep going until you have found the solution and then you have peace because you understand and have meaning for the formula. That formula then gets filed under 'understood'. Occasionally you are even in the position of being able to help another understand the formula in a quicker way than it took you, you enjoy the victory of understanding by connecting to others who have also understood the formula and can talk with you about other maths issues.

Frog Face

1991 aged 14 and 'frog face' started to follow me. I did not get away until 1997 then aged 20.

Frog face would wait for my school bus and lurk in the roads opposite. Frog face would watch me through the door to the sweet shop I worked in. Frog face would call, send letters and sit on the other side of the road watching our house. Frog face could appear at any point, at any time of day. I could not shake Frog face.

You may think that Frog face was a figment of my imagination, unfortunately that was not the case. For almost 6 years I was stalked.

As previously discussed I have a complex history. Frog face was just part of what has made that thick strong 'C' in the word complex.

Already fairly damaged in my world view, I found myself having to learn to live being disempowered daily. By the 'fear' of the 'ifs, maybes' by the potential of Frog face appearing without my control. I would stand on one side of my front door not knowing, would there be another note on the other-side. I jumped if ever the letter box clanged, or the phone rang.

For reasons I cant go into in this blog, I was unable to tell any one about my situation. All I will say is that Frog face was an adult who held a secret over me. To endure those days at the time, I believed outweighed the shame of anyone finding out. (As I said my perspective was already damaged).

So why write this? if I don't want to write about what happened and why?

Well I love brains, I love how they cope and how they protect themselves. During those years I found my brain doing just that. Protecting me in the best and most honest way it could. You see my brain was my greatest friend. We argued, we fought, we had stand offs! we did all the things together that BFFs do. But it has only been in the last three years that my best friend 'brain' has aloud me/us to share our friendships with others.

Over those long years my identity went from singular to plural. It still remains that way today, I am not an 'I' I am 'we'. At first I split myself in half. The day belonged to Frog face but the night was mine. During the day hyper vigilant, my whole focus was on avoiding and planning ways of out witting Frog face. At night I sewed a hidden pocket into my jeans. In it I tucked a protective knife 'we/I' would go out walking with the families fat springer spaniel. I'd walk in freedom owning my world and revelling in the sense of safety.

Pretty quickly I realised another split was needed if I was going to avoid anyone  knowing what was happening.  At school I created another split in another world as although bullied, it was at least 'seen'.

This splitting carried on until I was nine different people / personalities.  I jumped between these personalities daily depending on the environments encountered.

Soon we were all defined enough to speak for ourselves. We made an internal community. We had all our answers, we did not need anyone. Having lived through this process quite naturally and at the time logically. I have nothing but respect for grey matter.

I met Zippy and so started the great clamp down on the now completely dysfunctional set of people living in my head.  The greater the safety I could trust, the greater the need to want to quiet everything down into something less confusing. As Zippy says 'Carwen nothing directly bad has happened to you now for 13 years'. Today my personalities have been whittled down to bare shadows. Only their voices remain with me. I have learnt to accept them and accept us all living and chatting in my cortex. On good days we are friends, on bad days we are enemies  (especially when I'm tired), there is sometimes just complete overwhelm. But as my strap line says. I am Colourful Carwen, a crowded brain learing to be at peace with itself and its inhabitants!.

The pattern of "Sorry"!!!!!

Sorry

From pretty early on I learnt the word 'sorry'. In my younger years it was my violent behaviour that made me say it but even back then I used to feel extremely frustrated at people not understanding why I had flown off the handle.  To be totally honest I didn't understand either as was too young and used to believe I was an awful individual.

 An example of the build up to 'loosing it' would be a sound or a feeling that would overwhelm me. 

Unable to process the invading stress would result in me launching myself at whoever or whatever was creating the problem and attacking it. 

By the age of four I had scarred my sisters face and thrown her down the stairs and, quite rightly, both my sisters we're scared of me and kept their distance. Now I'm not talking about obvious stresses that everyone can understand creating this behaviour; my stresses, built out of nothing, escalated rapidly and left all involved in shock. let me give another example.  Once aged five I had been put to bed excited, my mum had told me she was going to the shops to buy us all new pillows and was leaving us in the care of my dad. This you must understand was extremely rare, I felt scared in the dark and she would not be there. I also wanted a new pillow. So I started to act up and in the end my mum came into the room I shared with my little sister. She said "If your not asleep when I'm  back then you won't get a pillow".  I cried more, the threat, my brain processed it as an unsolvable problem. "If I sleep, how will I know when you come back to get the pillow???". So I tried holding my breath to look asleep which also failed and gradually the dispare gremlins arrived playing in my head with no ability to get out of the loop, couldn't get to a new view or thought that I could get my reward the next day. Neither did I believe that the situat could ever be ok as it seemed impossible to be asleep and awake at the same time. I took my mums words literally. My brain even at that age was over thinking and became overwhelmed by all the possibilities It came up with to solve its predicament. My body got wound up and full of anger as each thought or action failed.

Preference

Have you ever sat in a room with a few other people and experienced a film together? Each person has watched the film from their unique view point, each persons opion is valid. When talked about some opinions may be challenged and changed, but overal the experience will be judged as a whole, and given a reference that the group can all link back to in retrospect, for example " that was a great night" , or " lovely film ,shame about the ending".

As human beings we have to create meaning to our experiences, enabling us to connect and know how to talk with each other, explain, or comfort one another.

But what happens if one of the people watching the film has a pair of sunglasses on? so experiences the whole thing from a different view point that no one else can share or understand. What if, to make it even harder those sunglasses were invisible.

Ah but that's not hard enough!, let's make this senario even tougher and give it two more options possibly three. 

Option one. What if the person wearing these glasses did not have enough understanding to know they had the sunglasses on?

Option two. What if the person knew they had the glasses on but hated them so tried to hide their impact on the film from those watching with them?

Option three. What if the wearer knew they had the glasses on and so did the people watching, what if everyone understood?

Not my words, but BIG THANKU Dan Segiel!!!!!

This is the first of a series on Interpersonal Neurobiology: Relationships, Health, and the Brain. 

How does knowing about the brain’s parts make mental health and happiness more likely to occur? 

On the one hand, we know that part of our mental life is shaped by how the brain functions. Neuroscience tells us that if we damage this or that part of the brain, our thoughts or feelings, memories or actions will be directly impacted. We also know that what happens in our relationships shapes our thoughts and feelings, memories and actions. And for these reasons, in Interpersonal Neurobiology we focus on seeing the mind as both embodied and relational. Embodied means that the mind is more than simply what happens in your head—it extends to at least the whole of the body in which “you” live.

But “you” also live within your relationships with other people and with the larger environment, the planet. So on the other hand, your connections with people and the planet shape your mental processes, from thoughts and feelings to decisions actions. This is why we say the mind is relational as well as being embodied.

The essence of mental life from this viewpoint is the flow of energy and information flow. Flow is the change of something across time. Information is a pattern of energy with symbolic value—it stands for something other than itself. And energy, in physicists’ terms, is the capacity to do something. This capacity creates a potential that extends from certainty to uncertainty as possibility is turned into actuality and then melts back into potential. Even if you just think of energy as a property of the universe that enables things to unfold that comes in various forms like light, sound, and heat, you’ll have a good starting place for how to just sense what the term ‘energy’ entails.

How energy “streams” or “flows” through our lives shapes our mental experience. If you smile at me and I don’t smile back, your feelings will be different than if I resonate with your smile, feeling the feelings inside of me and then revealing that resonance with a returned smile on my face, in my gestures, and in my tone of voice. Our separate bodies become “connected” as energy flows from you in the form of a smile that then connects with me. Your eyes and your ears pick up how that energy was received and two separate “entities” become connected as one in the exchange. This is how people come to feel “close” to each other even with physical distance that separates their physical bodies. Closeness is about resonance where two “systems” become linked as one.

Knowing about the brain is important in well-being because when we understand that the brain is a part of the body, and the body and relationships shape the mind, then mental health can be more likely to be catalyzed with knowledge of the brain as one part of the whole system of mind. Knowing about the brain’s different parts enables us to optimize how those parts work collaboratively as a part of an integrated whole. In Interpersonal Neurobiology we say that integration is the basis of health. Integration is defined quite simply as “the linkage of differentiated parts.” With integration emerges coherence and harmony; when integration is impaired, chaos or rigidity ensues. 

This background will prepare your mind to optimize chance experiences of life so that you’ll be able to sense chaos and rigidity and detect how differentiated areas of the brain—or differentiated aspects of your relationships with others—may not be functioning as a linked whole. Louis Pasteur once said that “chance favors the prepared mind” – and knowledge of the brain’s parts can prepare your mind to integrate your life by linking differentiated areas of the brain to each other, thus creating neural integration.

In the related blogs that follow this introductory overview, we’ll see the various players that, when known, can be intentionally shaped in how they function. For the brain, “function” means how energy and information are streaming through those particular circuits. Attention is the process that directs energy and information flow—within our brains, and within our relationships. And so we’ll discover that how we learn to focus attention can activate specific circuits. Where attention goes, neural firing occurs. And where neural firing happens, neural structure can be strengthened. When that firing is integrative, then we can see how using our attention in integrative ways can actually reinforce coherent integrative functioning in the moment and grow integrative fibers for future functioning to be more balanced, coherent, and harmonious.

So for now, this is enough for us to share. How you’ll learn to focus your attention with intention and knowledge in integrative ways will build the skills you need to create neural integration in your brain. Get ready for some fun!

INSPIRE TO REWIRE is a mark owned by Dr. Daniel J. Siegel and Mind Your Brain, Inc. All Rights Reserved.

Can't sleep

So I thought I would just make sure there was a reason to still be taking a sleep aid a night.

I find myself writing this in a catch twenty two, having not taken my little blue pill at the prescribed time of 9pm I potentially now will loose a whole  nights sleep!!!! Boooo!!!!!

Or, it only bring 1am I could take one it would kick in by 2am. As these little beauties last twelve hours, It would mean loosing half my day tomorrow. Or a the least being awake made of concrete.

That's a basic! The next issue is that my mind is free to play. Humph!!! And I am not alone.

 I have been fighting to try and stop going to the toilet every half an hour as one voice suggests 'your bladder is full'. Another had me obsessed with finding a song from zippy's computer, which I finally listened to by blue toothing it to the steroid in the kitchen.

 And No!!! I do not want to 'go on the exercise bike' till I'm exhausted!!!!! And No!!! I do not want to 'go and check if the fox is pooing outside!' 

I feel resigned can I cope with seven more hours of this. This which will only get weirder and more intense. Why oh why did I not take the pill. Oh yes I remember know because 'what if I'm ok now! What if I'm better! What if people found out! I relyed on pill induced sleep. I am ashamed. Surly I should be better than this!

I fight to make sure I am not just feeling another's pain interceding on some poor disempowered behalf, and so have send emails and texts to make sure everyone is fine. Now paranoid I have to cope with the possibility I woke them all up.

My ears are ringing and banging. Do you know what, writing this has helped. 

Instead of me working up to waking zippy up in another two hours (probably in floods of tears) asking, 'what I should do?', my head is full of people and banging and ringing and suggestive voices!! (Poor zippy,humph!!) and him asking, 'why didn't u take your pill?'.

I choice the blue pill!!!! 

Ode Dur cortex (tiny poem).

Trigger and overwhelm went out to play,

Trigger and overwhelm said let's annoy amygdala today!

So they puffed and they fought

But amygdala had a chemical help of sorts.

In the end trigger and overwhelm, could no longer play all of each and everyday.

And then Big Brother cortex arrived, demanding to stay! He said to amygdala "we will no longer do things thier FFF way!".

So together amygdala and cortex began the fight, to bring trigger and overwhelm to their correct and appropriate height!

Triggered and overwhelmed.

Overwhelm is a funny thing. Everything is exaggerated, every sense on full and above full. 

Sounds hurt, they are to loud. Crisp packets and ice cream wrappers thunder. Metal gates are as loud as shotgun bullets, crunching shoes on pavements can seem as if the very ground they were built on may crack.

Whispering becomes loud talking, talking becomes shouting, and shouting makes you want to curl up in protective ball.(overwhelmed).

Switching regulating emotional states in any appropriate way seem impossible, far to hurried. It's as if you need everything to go into slow motion to understand or comprehen. 

So standing there shaking the world of touch, taste, sound, reaction, vision all in Incredible Hulk mode! What and earth do you do!

Nothing that's what! ABSOLUTLY nothing! There is another element to this crazed sensitive state of overwhelm and that is the world of paranoia. If the world outside your door is dangerous, if your head is telling you that no one is trust worthily, that everyone will try to kill you, that you are separated, that isolation shut down is the only option. That no one will understand and so you must never rely on anything. What do you do?

Now I could give a text book reply here or I could give you the truth. As I have never been one for being fake I'll give you the honest truth. You sleep, lift your heavy body to do the bare minimum and sleep more! Gradually you become hungry, you try to eat well, and you sleep. Slowly each time you have enough courage to push the boundaries of the paranoid voices and heightened senses they become manageable. 

When you feel safe enough you start to re establish contact with the outside. A trip to the shop a text. You then sleep heavy exhausted day and night, a five minute conversation can be a marathon, and you sleep. 

Safety creeps further into all the damaged pain, meaning returns, thoughts return. People in a non threatening perspective return. You test the waters to look for truth. Eventually a wobbly corner is turned,

you carry on.

My Creative Twin

Been wanting to write about this for a long time, finally there seems to be enough meaning.

As you may or may not know I am creative , having what I almost term as a relationship with it (creativity). I would describe it as yet another split in my personality (me and it /  it and me).

Last year I joined an art group in fear and trembling knowing it was time to meet my nemesis. Prior to this I had only allowed myself to only make crafty things, no paint or unstructured elements permitted.

But I have a twin, an untamed sibling, and we are joined at the shoulder. She has her own head and neck and I have mine. We battle as to who's eyes to look through and whose ears to hear with; she works alone and only in isolation; she can not communicate but she is dominate.

From 2000 till 2012 I kept her hidden and insisted on my vision only. I explained to her that her ways of doing things was impossible! I explained to her that I needed connection and relationship, unwilling to cope with what she produced I feared dying myself if it carried on. We share a body but constantly fought and argued and she won to often.

Complex PTSD

Communicating more. Answering a frequently asked question. "What is complex PTSD?, How is that different from PTSD, chronic or acute PTSD.

http://youtu.be/SZQBvGxShlk

Looping

One of the common things I tend to be talking about with people at the moment is this terrible business of what my sister and I have nick named 'Looping'.

Looping from our perspective is defined as 'something- be it  a physical action, internal thought or external that dis-empowers you by your inability to control or choose to have its company'. 

Now I tend to mostly have only 'internal thought' and 'speech' looping

So I will write from that aspect.  My aim is to communicate some of the things I have identified.

My 'loops,' as I posted previously, are repeating suggestive voices, unfinished lines of music and external speech rules which must be completed in order for speech to move forward to another subject. I am never without noise in my head because of my tinnitus, so I see that as my base level on a 'good' relaxed day.  However I am learning now to be able to map the relationship between life stressors and the other 'loops'.

But another strange common denominator seems to be appearing in the patterns, and that is the frustration of being unable to complete.

 I'm staring to learn that you either give in to 'looping' and it rules you or, as I am trying at the moment, you try to embrace part of what drives the loop to start again and that for me is a great fear of finishing.

I'm not going to say that I understand this because I don't, I just know that when say a song line is repeating 'she sailed away, she sailed away, she sailed away'; I might as well be wading through setting concrete to get my brain to go 'she sailed away on a lovely summers day on the back of a crocodile'.  If by some miracle I manage it, it will quickly be replaced by another line from  another song.

So I have to ask myself is it worth the fight and the frustration, or do I just pack it away with the ringing/ banging and 'get on' with my day?

It's a catch twenty-two because mentally you then must find something equal to or above in intensity to be able to ignore all the other 'looping'. Achieving this will often mean rapid thinking, rapid speech or strenuous physical or repetitive movement.

It's hard to write this blog as I don't have any set solutions, I just know that I journey along a road of ups and downs. Days of coping, and some days of hiding. Maybe I just now accept the journey for what it is unknown. 

I have found comforts though that make a level of peace achievable and I share with you two of my best helpers. 

1. TV
Watching a few episode of a series back to back on a bad day can be like manner from heaven. This does unfortunately means that nothing else gets done however as I'm sure other 'loopers' will agree, piles of washing and 'must do's' can take  second place if you are actually in a position to get calmer for a day.

2. Music

This is my gem. I am often seen wearing headphones and what I do is choose a song that I can cope with and set my phone to repeat that song. It has been known for me to listen to a repeating song all day and all the next day until things calm done. What I find is that, where as my 'loops' don't end, the song does end and then it starts again and finishes again. This gives me such relief  and a sense of 'winning' as I  know I am not going to get stuck, the phone in a way takes control, guarantees to carry me over  into wonderful endings.

It's all a wobbly wobbly world, we all have our quirks. I'm aware I've not finished this blog, as I have not written about speech patterns or put a proper ending to anything but, ironically I need to go and fold some books now to calm down. Thank you for reading and thank you for journeying with me.

.........

Some of the sounds in my head

I've been learning to communicate recently. But words are often not quite enough. Below are two of the closest matches I can get to my tinnitus and also to when all of my voices are out at once and arguing with themselves.

As you can imagine when both are in overdrive, overwhelm and freezing are often the best my brain can do, as it tries to process the internal and external stressors of daily life.

Tinnitus -- http://youtu.be/NPB0nQqiDj8 

1.18 minutes long.

Voices and looping --- http://youtu.be/uLni3XEHjTw 

.39 seconds long.

Changing a tyre

Recently I have been acutely aware of how much Zippy has to plan ahead for our family. I have, in light of this and the doubling of my meds, been trying to take more pro active responsibility.

The tyre in our car needs changing! I am going to be pro active! I am not going to leave this for Zippy to do!

Boldly I set out to 'Sam Tyres'. I gulp and reason with myself that 'garage land' is a land I understand, I can do this!!!

The car pulls right and immediate right again into the thin blue gates 'Sams Tyres'. The first thing that strikes me is a scene of utter chaos and the noise. 

I have pulled into a car park of Turkish, Afghan, African, Polish, Eastern European 'man land'. Theres a man with velvet red slip on shoes. Another with fake crocodile boots, yet another in sports direct steel toe caps, all covered in plaster dust.. It goes on.

Somewhere in my vague consciousness I can here all the various languages. I'm aware of a very un-English like jumble of cars and vans all trying to be 'next' for a new tyre. Horns are honking and in the din I realise I have parked right in the centre of the gates.

I have no clue how to express or navigate me and my car's needs. I get out, breath and look for eye contact with some one who understands I am a customer.

No one steps forward or reasures me with a helpful glance but I'm bloody minded and I stride up to a ford transit perilously balanced at 45degrees. I demand help from the mechanic by standing in a way that casts a shadow over his work. He speaks first "tyre?" he half shouts in an accent, I'm taken aback so I nod. "Tyre!" He goes on using his fingers "One two three four?" He looks at me questionably.

I'm not sure what to do, aware that velvet red shoe man has turned with interest in his skinny jeans. I hold a finger up "one" I reply to the mechanic who is already strutting purposefully towards our Citreon.

Taking a cigarette out of his top pocket, mechanic man lights up and roams around, "two" he says challengingly. "One" I say firmly, pointing at my offside front tyre. 

He seems disappointed, I feel triumphant that I didn't give in. "Drive your car" he commands pointing at what looks like an impossible path to the garage.

I feel myself freeze, I know I can't do it and my heart pumps. I hold up the keys and squeak "you". He looks disappointed, or at least resigned, and hops in the car.

Honking the horn repeatedly, an incredible vehicle dance starts. Men seem to appear from everywhere. Guiding, suggesting, hustling, whistling, until my car creeps its way through all the others to the front.

I myself am guided into a ply board makeshift hut. A hut containing three white garden chairs. I feel ridiculous,  have lost control and can't leave! My car is now trapped by others and I'm sat in a little 2m by 2m hut with its low roof and walls painted in yellow gloss.

Wondering how to keep calm I struggle to sit. Should I cross my legs, sit forward or sit back. Knowing none if the panic is really relevant, I watch as my car is jurked up and down on the trolley jack and air drill screeches. I remember all my lessons on tyre nut torque and wince. Then I look in horror as at incredible speed and co operation due to yet more honking and gibbering, my car is skimmed out of the garage across the car park and out the gate.

That's it I crumble! I don't know whats happening! Have they stolen my car? Are they test driving it? Where's it gone? I'm supposed to be collecting the kids from school in twenty minutes!!!

Body frozen unable to move, the same mechanic ambles over, "your car is dirty", I stare at him unmoving, "dirty your car", he seems slightly unnerved. I hear from far away a voice exclaim in a very posh voice "oh it's terribly filthy, most disgusting".

The words have come from me only I don't recognise them or the accent at all, dismayed I realise I must try and match that accent, but I'm so confused by it myself that I cannot. 

"Thirty pounds" says the mechanic. Not understanding all I can think is wheres my bloody car! "Thirty pounds for tyre and car wash" he says pointing out of the gate, "you pay card or cash?". 

Now when frozen (those that know me understand), I can not move until some bizarre thing goes ping in my head. However if someone else gives me a command then I will move instantly.

Thankfully mechanic man at this point gave me his full attention, (mostly because I think he thought I couldn't pay), squaring me full in the face he firmly repeated "come pay, come pay" waggling his finger at the bright blue hut opposite the yellow century box.

Having payed by following his blunt instructions, I then walk with concrete filled legs across the endless length of the car park. (Im sure it's tripled in size and velvet red shoe man is still wandering about on high alert). 

Through the blue gates and through a similarly styled yellow pair, in relief I found my car. Clean, sparkling, glossed tyres, polished interior and smelling of sweet spring flowers. 

Shocked, I smiled, marvelled and slid into the drivers seat. Looking at the gleaming gear stick and buffed glass. Where else but Tottenham could you get such a multi cultural experience, a full hand valet and a new tyre for thirty quid?

Conversations

Silence is a very safe space.

Silence is something that's easy to achieve but silence is a mock friend. It is impossible to build bridges out of silence.  Similarly only listening and commenting on what everyone is doing with their lives is equally one sided and isolating.

So what are these things called group conversations. How on earth do they work. I find them terribly confusing but am determined to persevere.

Recently I realised a great longing to be connected to people, however, I have not got much training in the correct ways of making this happen. The following are some of the formulas I have tried to work it all out.

Three in one

There is a great big wall in my life at the moment. Split in two: one Carwen on one side and one Carwen on the other  (and then a third watching from somewhere high up).

Firstly let me describe the wall, it's made of thick concrete and it's all grey. The surface is smooth on one side but gritty and sandpapery on the other. It's tall so so tall and it's wide. In short it's impenetrable and it's so densely made even sound can not get through. The Carwen stuck on one side has no chance of getting to the Carwen on the other. Only the Carwen high, high up can see into both sides.

Let me describe each Carwens predicament. 

The Carwen on the left hand side is presenting what look like anger. She is volatile and flies off the handle in a moment. She is the strong, the determined and the fighter. The wall on her side is smooth and she uses it as a guard to watch her back. If anyone approaches this Carwen they are met with suspicion that can turn into attack at the mere fluttering of potential threat.

The Carwen on the right side is beaten. She has been trapped by this wall for such a long time. Her body is thin, tired and bruised. She loves the Carwen in the left hand side, she wants to calm her down. Understanding that really angry Carwen is only scared, the anger is a front for deep pain.

 But now she sits immobile, the wall on her side is  sandpapery and rough. It scrapes and shaves at her thin arms and legs. She has sat now in defeat and despair, knowing her twin is hopping around misunderstood and communicating everything that is not true.

The third Carwen, the observer. She looks down on the other two. She watches as if it were an amusing game. She looks from one to the other but feels nothing. There is not much to write about her as looking is really all she does. 

Occasionally she considers climbing down to help one or the other but she is met with such confusion as to who is in most need. So the result is to just sit passively and not get involved. She is frozen by overwhelm.

This Blogg I dedicate to my young fighter friend. I write on your behalf as you are to young, in the hope that my experiences will help others see meaning in yours.

New extremes

 A short thought

Extremes and faith. Yesterday I would have said the extremes were signs of victories in faith. Flexibility, the ability to be ready, need nothing and go!!! Go, go as the call was made and the sacrifice required was presented. Go with a smile in the middle of the night.

Yesterday I would have said that extreme faith was the only way to test my commitment to the absolute. This would mean loss after loss, but a better fight after fight!

But then the extremes became normal, my brain became addicted and my heart lost reason. The distance between safe and unsafe ever wider.

So a few generations on, yesterday became today and now we fight for a firmer future but we stand on sand.

The new extremes are not the normal obvious whizz bang boooo!!!. The extremes are now things we dare not believe and talk about with whispered breath like consistency, longevity and trust.

Yep! the new extremes are not a high risk or a potent mixture of heady grit between the teeth. They are just the basic building blocks of relationship. 

These new extremes are barely remembered, if at all. There are few places to learn them from in this rushed instant existence, they are what make relationships grow and nurture. The new extremes such as honesty, love, loyalty, fun, joy and connection.

Join a revolution in the extremes of  today with rebuilding safety that can create houses on rocks. Join a revolution in having to learn about roots and sticks.

Join a revolution in the biggest most scary things of all, being in relationship with the wider. Home making, being friend, being mother, being father, being son / daughter, being community, creating safety rocks and making genuineness that last a life time. 

A new set of weary soldiers shout;

 "We want to live on rocks, the sand made us sea sick with its swaying". 

"We want to build on rocks so we have solid places to bungee from and spring back to".

So may we have the courage to cut this new extreme path. The sight to see  the longer way over individual, instant, and idealistic gain.

 Revolutionaries;

 "build with others, connected no longer be alone". As history had tried to say before, "No man is  an island and singular ness is not his throne".

Then on the rocks, villages will appear!, the old and young will learn to live again, need will be appeased and people will see people not just a possibility of gain. 

Yep, in this new love revolution family and community will reign.

Parts, Spanners and Logic

Being able to look holistically at things is something that has not always been available to me. The world has never been a simple place. It has always been, for the best part, a confusing, moving, heaving mass of intertwined meanings, subtexts and fascias.

I found people, places, routines, and non-routines hard. It was all hard and, in short, seemed very little that I understood until 1999.

It was in this year that a thought struck me and that was to take my love of trucks and large engines on a gear (excuse the pun). (I respect the humble car and its fine twiddly bits but there not a patch on a good old Perkins). I then enrolled on a two year mechanics 'Remove Replace NVQ', I got more than I bargained for.

We first had to learn each system; what and why it was there? Water system, oil system, suspension, brakes, fuel; the list is quite large so I'll stop. Then we had to learn how all these things helped and interacted with each other. Making the vehicle work smoothly and efficiently.

We then learned how all these systems then had to respond and alter when encountering external changes. Reacting smoothly to influences such as speed, load and temperature. 

The penny dropped and my eyes were open! Sparks flew, even as I write this, and I feel an excited churning in my belly!

One of my best friends had finally entered my world 'LOGIC'!

Gradually, over the two years, me and logic grew a deep relationship. I realised life is like an engine and relationships are like the systems on cars. Conversations are like the external pressures requiring flexibility and reaction.

It was the first time I had an ability to get out of the reactionary (the world is unpredictable and dangerous) a mode that I had always lived in. Things, stuff and people in my mind clearly became the same as those complicated vehicle drawings and I could now navigate and understand.

I saw life in levels, sub levels, dancing and interacting. I saw and still see people and environments in this same way. From physical self, emotions, speech, work and to rest. Each have layers and systems. You learn what must be in place to make them / it work.

The dinner must be made in time so all the component parts are cooked. Each according to there oil based, protein carbohydrate based, water content, identities. It can then all be presented at the same point, thus creating a multi-taste experience at the table. With the correct cutlery and drinks receptacle in the right quantities, which then correspond to the ages and diets of those eating.   

The lounge can be broken down into sofa, floor, bin, mantle piece, smell, dust layer, dog bed, computer / tv, and all of these must be at optimum function. Resulting in the ability to relax for the evening.

People talk to you and they will have an overall character. You will interact with it in a certain way (like/dislike), they will have super purposes for the direction of their lives which will then be broken down into pathways (walked or raced). each pathway full of sub purposes, actions and events. 

If I as the other conversant can grasp what the current purpose ( ie: to relax, to plan and to discover) is then I can interact or retract according to the most product perceived outcome. 

Often I  have learned that what is most enjoyable is not to have an ending. Having opened up a set of thoughts with another - leave it open. Don't look for closure on the the discussion, this then allows for further contemplation and creativity can kick in. Usually you find a whole new way of concluding, which would have been lost if at the point of parting either one of the conservationists had panicked, and tried to stunt the process into a box.

Sometimes if things are clear enough and I have an umbrella view, there seems to be the ability to see the colours of the situations. Blue for water, red for brakes and yellow for auxiliaries. That person is green, the room is blue and you are messy. You don't know your brown and lumpy; let's discover your true life giving colours. Let's add a good dashing of logical hope. That ones red, this ones multi coloured with extra glitter.

Yes it's a colourful world!!! The gift of logic was such a blessing! The gift of understanding how to build something complicated by breaking it down into systems, parts and types of materials. Understanding that in the end it must all work together seamlessly and produce a maintained well oiled smooth engine which is fit for purpose. It all still stuns me!

Whilst I see this is a continued learning experience and journey; I am eternally grateful to my tutors, Rodger and Dennis. The hours they practically gave, starting with parts and spanners instead of pen and paper! This blog I dedicate to honour them. Thank you.

Body brain and bed! (A short poem)

Energy, physical energy!

It would be lovely to have enough spark
to go from morning to night.

To not give up half way through a day
and SHOUT "turn out the light".

But what we must realise is our head
is never severed from our body's form.

Our beautiful nerves and sinew are intrinsically linked
and this can make the whole mass forlorn.

It's just like a headache
measles or stress. 

head and nervous system intertwine
but sometimes end up in a relational mess!

So spare a thought for hurting heads
that can't stand straight on toes. 

It's not that they are lazy and can't get out of bed,
like everyone thinks they know.

Fact is they are physically exhausted
trying to move in a tied up rope. 

Takes a lot to keep a perspective
Energetic... Light... Hope.

Next time you take ill
please take note of it's effect on your whole mass.

Spare an understanding thought for those
who feel they keep coming mentally physically last.

Carwen

A simple mess.

Sometimes things build up and get overwhelming; the flat crusts up as if it were a piece of metal rusting in the rain (wet cold and unyielding).

The ability to deal with the rusty crust and to know how much effort it's going to take to sand it back to to metal stops me in my tracks (fear creeps in I gulp it down and look again). I know what it needs. 

You need to fill the dents and prime it up. Give it a first thin coat so it doesn't show a drip and then a second (possibly a final third coat) so it ends finished  in a lustrous deep colour of white.

Ah yes! when the flat creeps into a concentrated mess of layers and sub layers. The easy thing to do would be to sit paralysed  and unable to take your finger out of the dyke for fear of drowning. 

Boldly I learned one day from a friend the following: Go into the mess and pick one thing up. Ask yourself "were does this belong?" Take the item and put it away, if it had no 'home' then make it one. 

Small things

Small things can sometimes mean the world! They are sometimes the greatest of unseen achievement. They encourage you to make a smile in the private everyday.

Today after living in our flat for almost ten years, after carrying four plastic key recognition covers for months, I have finally colour coordinated mine and Zippy's front door keys.

This means on a daily basis we will no longer get confused (our keys are all the same silver colour) between our main door and front door key. Wooo hoo!! I HAVE ACHIEVED!!!!! Sooooo HAPPY!!

Tourettes friends and family weekend

Family & Friends weekend 2013

May 2013 -  The whole family are all helping to put together a holiday weekend for people and families affected by Tourettes.

Back then having only showed or talked about the inner workings of my world with a handful of people. Back then it was to much of a risk, not only was it probable that there would be a melting internally but I was scared and covered in shame. Still at what seemed like the mercy of my physical self and unsure / unaware of why my body reacted the way it did.

As our fellow campers arrived, we watched from our camp. The dodge (our beloved converted camper-van) was placed away from the majority in the corner of the field. This placing of distance was a standard for me and Zippy as partly it meant a place for me to retreat to. A place I could complete my rituals to calm down and not being seen by others but there was a huge surprise to this normality!

The dreaded silent gap

So what I would like to tackle today is what I call the dreaded gap.

As you know, change is not something I adapt to easily and this morning was a classic example.

Over the weekend we had left our car at the office and borrowed the mini bus to help with a children's party on the Saturday.

Monday morning, this morning, Zippy reminded me again that we would drive the kids to school in the mini bus (not the car) . I was greatful for the warning of difference as I had again forgotten the change. His warning meant a softer landing on its encounter.

Remembering

31/1/14

Today I am exhausted and I can't take in any more! A friend once described it as your head being like a bucket with water in it and sometimes theres to much water and the water starts to flow over.

That's where I'm at I think and my bucket has had ten taps on full..... maybe theres not even a bucket or maybe I'm an exploded fire hydrant water uncontrollably everywhere?

So where am I?  In bed trying to calm down and trying to cope with what I've heard, what I'm hearing and what I will hear .

My body is still but  heavy. I'm stuck to my mattress made of concrete.  I'm aware of what feels like bubbling under my skin and tingling. Every now and then  a limb, or over a part of me, will experience a shot of fizzing (inside the bubbles) like Champagne  being poured in a glass.

This is not an unpleasant thing I experience and I used to have it daily. It's a type of paralysis; a deep meditative place thats calm and safe. 

Apart from ringing in my ears,  it's quiet and my mind slows to just filtering suggestions and voices in a way thats singular rather that eight or nine.  Eight or nine conversations  I  can't quite grapple with and one conversation with ringing is the safest quietest place I get.

More movement please!!!

I get stuck in positions that are physically uncomfortable but it takes me ages to realise I am physically frozen and then move.

For example:

Like being sat in a chair with an outside door open making me cold.  I want to move and shut the door (adding to the situation that I'm hungry and thirsty). The thought of getting a cup to my mouth off a table that's so easily in reach - I stare at the cup willing it to fly to me but know you need to bend, move your arm, and pick it up. 

Uncrossing my legs, because my leg is going numb or my ankle is bent and uncomfortable way, I lean over the sink and drain vegetables whilst my feet are still planted by the cooker.  I remind myself, as I realise my back is twisted and mildly hurting, thinking "move your feet, make yourself straight in front of the sink, pivots and loads! pivots and loads! & remember pivots and loads!" 

Help! I want to leave Tesco but its hard!

Help I want to leave tesco but I can't.

This whole subject of food shopping has reared its head at various points over the years.

It started with colour, now what on earth might colour have to do with it you say?

 To me there are certain colours that do not work along side edible food stuffs. When the combinations of certain colours and food are seen together, I struggle to eat as they seem dangerous. Here are my top five in order of food / colour 'can go together' list.

Finally being able to explain

I can write this now because since going on pills instead of being swallowed into blackness, which is undefinable, I seem to be able to still think instead of being engulfed into my body.

 This is the first time in my life I have ever felt enough logic to be able to describe any of it. As my confidence grows, I learn I will not be swallowed into silence which takes days to get out of. But now I am able from a distance to  put words to it / them / us / me.

The speed at which new subjects or voices come and go are to quick to explain or hold, most are paranoid and threatening 'if u don't do this this that will happen' (driven by panic some will get stuck and reoccur).   'She walked from Leeds to Chester' repeated over and over in a sing song rhyming way or 'Rose will die if u don't say what's in your minds eye'.

 These thoughts will mercilessly haunt me until absorption somewhere else is found or I put music into my ears. 

   Some times, if too many physical places are visited in the day then the present place becomes the whole day and everything else is like yesterday. So although today I have been to Tesco, dropped kids at school, dropped Zippy at work, been at home, and cleaned the computer desk; each of these moments I struggle to recall because I'm on a dog walk.

Wading through suggestions and voices consumed, although now I have remembered each episode so as to write this, they seem so unreal, as if they may not have happened. Remembering putting them in sequence is exhausting as it means going back in thought a million thoughts previously.

 For example the thought of Rose killing herself unless I text Primrose, this I put down to me being hungry this morning. But even now as I've written it I have awakened it again, and now know it will have to be processed and gone through all or got over again.

   How wil I process this I don't want to face it all again I don't have time. I will do it by picking kids up from school, a physical state change that will mean I forget all this. It will become yesterday and I will be shocked if I remember to read this note so much in one day in one hour.  

It's the  crippling realisation that it's been so hard to try and explain, This evil twin/intrusions have kept me from communicating.

  It's a bit like trying to explain an all consuming explosion. But only being given a split second of that explosion to do it in, before it rumbles it's  way into the physical, resulting in body shock. Brain rendered useless and void. 

  A state change, or safe bedroom and routine are the only way to try and keep going, calm down. This maintenance in its self is exhausting and constant.....Apologies I circle...

 I rely on my clothes for comfort they don't change. 

Smiling as I write and reread this I wonder what more words will be put to use, to explain what's always seemed impossible.