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.

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?

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.

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. 

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.