Are you ok Carwen?

My brain whirls into gear. I start to try and cross reference a whole load of information to try and get the correct answer.

Firstly, what context is this question being asked? 

Is it a quick social meeting situation were I'm supposed to say, "yes I'm fine how are you?" 

Then comment on further meaningless statements such as the classic, "so enjoying the sunny weather" (statement followed by a smile). In this situation you are not being asked for anything greater than a positive memory of a 5 minute meeting that enhances your bond of care for the person involved. 

Then there's the mid level, "how are you?"

This is usually someone who knows you and is genuinely interested but only 20cms into your world not the full measure. You have to remember to give what I call 'topic titles' but don't unpack the topic.

Then there's the not equal "how are you?"

This is perhaps one of the easiest as the person usually always works in this pattern every time you see them you just have to identify it. They ask how are you?, I give a quick summary of a few bits of personal information and then ask "how are you?". That the rest of the meeting sorted and you spend a few hours identifying and solving problem patterns in the persons surrounding environment.

Then there's the echo.

This person works by echoing. It's almost a tit for tat "how are you?" "How are you?". How's work? How's your work. This only requires one piece of information replies, any expansion on a one sentence reply will be ignored and another question asked until the prescribed 'set' of questions have been asked and the person is fulfilled.

Then there's those who can get  nerdy, deep, and are what I call fellow pattern thinkers. 

Carwen how are u? Six hours later all subjects covered from both our lives it's 3am and everyone's in bed. You say goodbye knowing you have offloaded up loaded pondered and perceived and are fulfilled, with every topic unpacked repacked cross-referenced and logged. Sleep is deep and content.

Then theres double question bonanza.

"Carwen how are you? Did you see that program last night?"

Wrong wrong wrong, that's two questions, neither of which you are going to answer as by the time you have separated and categorised the information it is to late and the conversation had moved on so I'm left on the back foot trying to work out what is now being said.

Then there's the well intended but can't cope so get cut of with no resolution "how are you?"

Negative situation 

•  " I'm worried about X"
•  "Don't worry it will be alright this time next week?"
• "You've been here before you'll be ok?"

These are the hardest and the quickest to learn not to be vulnerable with as they don't understand that it's really hard to ask for anything. 

Positive situation

• "How are you?"
• "I'm so excited about X"
• "That's lovely"  

They change subject or look away or interrupt you mid sentence with there next observation or comment. In short no time has been given for your reply and you realise your going to have to transition with a cannon full of unexplained excited energy in the next period of time - sooooo hard. This will often result in shut down from me as I desperately try to filter and be interested in what's happening and fail. No closure....

These are just a few of the thoughts racing round my head as I'm asked  "how are you?"  

They are of course all thinking about the other person. There is of course where I'm at.

• Am I busy?
• Do I have time?
• Do I want to risk getting the answer wrong?
• Have I enough energy to get my words in the right order?
• How are my voices behaving?
• Are my voices shouting something different to what I want to say?
• Can I be bothered to talk at all as I'm not alright but know it needs to wait till I see my therapist?
• Should I put all mental stress to one side and blar blar blar????

And don't get me started on the complexity of group conversations!!!!!

"Carwen how are you?"

I stare blankly exhausted, "I'm ok". End of conversation 

I don't know why?

I am in one of the happiest places, I'm on holiday. The same hotel complex we have visited for the last six years. We are recognised by the staff and we all in turn know thier names. They have watched my children grow over the years from buggies to the now confident key caring independent selves.

It is a safe place. We all know what we can eat and where, what pool is what temperature and what restaurant plays the football. Yet amazingly there are still incredible things to be discovered, first times that neither I nor Zippy thought would happen.

Example 1.

Zippy and I are sharing a bedroom for the first time, not just sharing a room but we have zipped our single beds together! Zippy and I have swapped places - he has lost three stone and now does not snore and I have started to snore (LOL - I'm getting my own back).

Example 2.
I am wearing 'just a swimming costume!'. For those of you, who have been on holiday with me, will know I usually wear at least one pair of cycling shorts, one costume and a knee length dress.

It all amazing!!! It's all victories and moving forward moments. BUT! I need to be truthful to myself and have a blog rant to get tensions OUT!!!. Also because I can't be bothered to drink to relax as my liver hurts. Yes my liver is protesting or maybe it's my gallbladder (humph) so I need another way to go RAAAAAAAAAAA!!!! SO here goes!

I love swimming and playing catch with the kids. Finding myself switching ages, I get caught in different memories. Wearing Just a swimming costume, something I have not done since childhood, also messes with all my senses. I love it and feel free, the wind hugs you and the sun strokes you (body memories start to fight); Ages switch and flip through my brain and body.  

Back to the present those are my children, I am not a child. I organise everything, fold all the towels, make the bed, and clean the kitchen; my age returns. Then fear creeps around and I realise I have no control over my food but this year there is an abundance in our fridge, thanks to the lovely Mrs P, and we have food vouchers. I switch ages again and talk to all my selves reminding them we are all safe and will not go hungry. Coming back to 2016 I try to remeber what my children have eaten, what they might need to eat, whether thier behaviours are hunger based, over stimulated based or sleep needing. 

It would be lovely to get rid of all this ridiculous worry by having a pint of a large bicardi and coke, as this option is not available I leave you with the following;

What about sun screen?

When did we last all use sunscreen?

Check, check no one is burnt...

How many calories have we consumed?

What's the time?

Where in the day are we?

Who is with me now?

How old are you?

Where did you go?

Is there anything I can do to help you?

Climb back, climb back.... Don't run from each other, if we run we will just keep colliding, Who are you? Where are you from? How can I help you? Would you walk with me? Can I introduce you to my own children? Who are you? Where are you from? ...... Roll over!...... Oh it's just Zippy. That body heat is not a threat. That breathing is not going to kill you. In fact the heat is OK too. It's not going to be something you have to endure and survive... Walk with me my ages... Walk with me.... Let me walk with you in the heat that is to be enjoyed and celebrated and maybe I say thank you to me clever liver for helping us all dance through our panic and fear. All my ages, all my voices - we are safe! Let's rebuild and keep mapping a new memory path whilst respecting and grieving the old.

Trust

Your so brave!
Your doing so well!
You've come a long way!

Keep going!

People often say these things, but what they don't know is that inside there is very little feeling. Days are some times broken down into moments or hours, and hours into minutes. Process and patterns are the slides which keep you moving. Process and patterns become the tried and tested formulas for being 'appropriate'.  If a situation or an event occurs once the correct pattern of behaviour / speech is found and matched, it is then employed and that apparently means you are doing well?

Sometimes the formulas let you down and you miss what is meant or a trigger can send you spiralling into uncontrolled panic. Then there's the fall back position of frozen silence. Silence is something very few understand but silence has been my friend since I can remember.  Silence is always filled by other people as people like filling the gap.

"Your so brave, look how far you've come"

"I'm actually a lot further behind than you see my friend"

What it's actually about is trust. Trust is being able to let your guard down and know that your safe. I get scared at the reality of how little trust their is inside me. But my real goal is not to be what looks right to others; my real aim is to feel trust. 

Sometimes I look at my children and I hurt inside as they have trust naturally there. I look at people around me and they have this beautiful 'trust'. I can't remember anyone that I had to trust until I was in my mid twenties and  it has taken me until now (aged 39) to realise that my trusting is still only functioning at about 30% (but at least its now there). I'm not ashamed of this or even care what happens next. Maybe 30% will be all it ever gets to but at least I know know what it is.

From the valleys to the extreme heat

Quite frankly I have reached a stage where writing anything makes me sick with worry. So why write? Well I am also aware that part of the root of the worms living in my stomach is fear. Fear of writing the wrong thing, fear of hurting people, fear of creating conflict, fear of just mucking up without realising till its too late.

On reflection comes the realisation that these are the very fears that have often got me into so many pickles. So I want to push through.

 I was brought up in a "strongly faithed' family although not strict brethren we were a sort of off shoot 'radical type' style of brethren. Women adhered to the submission of men in a classic sense. Women wore head coverings and dressed in simple fashion. Main stream life/music/dress were seen as wrong and sinful  "of the world".

The men in our lives were strong larger than life dominate characters who took the younger men under their wing. Teaching them the same radical strengths they believed would  help build a more forgiven, holy cleaner world.

Now at this point the worms have wriggled into my core. You see I still have a very strong faith but only as a result of rejecting most of what I was brought up to believe. In fact I imagine if I were to sit down with any of those from my childhood, many would shake their heads at the way I have been 'polluted'. 

But I can honestly say my Faith is at peace now.

As a child my impression (rightly or wrongly) from an early age was of a danger, the world  simply being split between Good and Evil. The scary devil and the loving God. As a child my physical and emotional world views were full of extreme things, extreme situations, extreme environments, extreme beliefs and extreme change. No grey areas. 

The first environmentally extreme change came between the ages of four and five.

I had been born in a Welsh farm cottage in the middle of a valley, the world was mine I would wander and roam the fields and woods unhindered, it was often said that if you couldn't fine Carwen she would be at the bottom of the lane sitting in the big puddle, or watching snails gliding across  the wet garden stones (a pastime that is still well loved today).  On a Wednesday my mum would drive us to a village playgroup and then to a market for food, food that would last till the following Wednesday. That was pretty much how life ticked over. Simple, calm, isolated at peace. Very few people were around for the first four years of my life.

Then my dad decided to build himself a house from scratch in the village. We moved from the cottage and I started to attend the local village school. Only having 14 pupils it was small, but I remember grappling the mixed feelings of overwhelm, unwanted confinement, people and restriction. I would wet myself almost daily and once soiled myself which led to being teased for the first time. I was frightened by the girl who was rumoured to have a witch as a mum and scared of the boys who found it funny to run at me and shout 'boo' in my face to make me cry. I can remember the panic of watching the window getting darker and darker,  thinking it was late but I wasn't in bed? (winter evenings).

Then as I reached four and half my dad decided to sell his business. 

He brought  a Peuoght 505 estate, we travelled the country saying good bye to people and moved  into the hub of church life in a busy five storey victorian house. The house was in yet another foreign world (the middle of Toxteth Liverpool). 

For a few months my sisters  and I were put into a school full of more kids than we had ever seen.

Dad packed up two containers with tractors, wood work machinery and the newly brought car.

We said more goodbyes and were prayed for and we got on a plane.

Overnight (the length of the plane journey) our worlds changed completely and utterly forever. We woke  to a world that we niether recognised and I never made peace with. We had landed in the newly independant Zimbabwe. We were going to be missionaries!

To be continued......

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.

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!

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.

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.

.........

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.