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.

Speech and communication

"Can you put the peanut butter in the box please?"

Interpretation, "Can you put the butter away in the fridge?"

"I've made a rose pot last night"

Interpretation, "look I designed some rose patterns on a wooden vase last night (art)."

"Can you put the sandwiches in the boot?"

Interpretation, "Is the food in the car?"

Those of you that know me on a day to day have got used to my inability to consistently communicate. Some days I am able to speak consistently and coherently but other days it all just comes out wrong. Sometimes this misattunement can go even further and I find myself unable to speak at all. I know exactly what I want to say, have the words in my mind but they just won't come out. If I manage to force them out it will be because who ever I'm talking to has waited (sometimes up to a minute) for me to rally round and find a way.

I find conversations extremely hard. On a one to one there is often no problem, but put me in a group and its extremely stressful. Then put that group in a restaurant or a bar and I will openly admit to often resorting to alcohol to keep me relaxed enough to have any hope of surviving.

Recently I was reminded of the basics. When you have a brain that is hard wired to constantly scan for danger it is impossible to function efficiently if you feel unsafe. When under threat or perceived threat your pre frontal cortex (the logical bit) is switched on and off. Chemicals produced during this process such as cortisol and adrenaline can remain floating in your system in debilitating amounts for up to four hours after being released in enough amount to help you lift a car (pass the wine please or can I go to bed now).  

Add to that the unsafety of not being in total control of your inner world, I often have looping lines of songs that haunt me for days, ringing in my ears, banging in one ear and voices arguing or interrupting my thoughts. The voices may be commenting directly on the situation or giving me advice about the person Im speaking to, sometimes they just challenge me to swear F***k OFF!!!!!, they loop often saying the same thing over and over whilst getting louder which will invariably bring out maybe another two / three voices to argue back or endorse whats going on. (I ask for more wine to numb things,"I need to go to my room").

Part of my healing journey has been to acknowledge that there are very few spaces I feel safe in. I carry within in me enough to make the safest place unsafe. I feel like a walking sabotage. I have had to learn that this sabotage is not a direct reflection of my character but it is an addon to my fragmented identity. In the past I have thought I was just a very bad person rotten to the core. In those days my lack of understanding would result in distruction of some kind which would then just confirm to me my horridness.

But I have learnt other things aswell. I have learnt that to try and deny the voices, the need to sleep, the banging, looping, swearing and inability to communicate only makes it all worse. I have learnt that to try and constantly "make myself like look like everyone else" also makes things worse. We live in a new era of understanding and tolerance where expression is allowed and I want to say thank you to all my friends and family who make me feel safe and normal by letting me be and do what is "my normal".

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!!!! 

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.

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!

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.