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".

Films one and two.

 One year a very important event happened. I think I was about nine. Our church farm was going to be sent two films. Naturally we were all excited! We were one of the fortunate families in Zimbabwe to have a Betamax video and occasionally we would go to drive in movies. These films however were going to be for everybody. Even better than that these films were apparently going to

help save people. Now you didn't have to go a hundred metres to realise that there was a lot of saving to be done. As a country we were three years into a six years drought and our dam was drying up, the crops needed rain, people were getting extremely thin and our cows were being rationed for their dried husks.

I was so excited we were taken to our church building on town after dark and the little hall became rammed. The Pilgrims Progress began. However as Christine stumbled through his journey I didn't understand it at all and it just became more and more upsetting; he was having a horrible time and even when he was doing things that he thought would make him happy - they even end up hurting him. My stomach twisted more and more and I cried. It was a horrible film! I couldn't understand how on earth it was going to help anyone.

Trigger warning! The gates of Mordor.

Sometimes I shut my eyes and see myself stood at the foot of a towering black gate. Its menacing just by its presents. Like something out of Lord of the Rings. I can be in two places. 

Standing at the bottom of the gate marvelling at its great width. I stand alone, singular, in the dry dusty desert one hand feeling the warm of the wood. The sun has heated and weathered the rough oak timbers  over time. This is my entrance to Mordor.

Whistfuly I find myself hovering somehow now miles in the air and I look over the gate. On the other side is mayhem. Orcs everywhere, slimy, ugly, angry. On the other side is noisy and intent on a fight.

 I hate what I see, I can't distinguish the noise of all the rabble. They are whipped into frenzy by thier own encouragement, I am scared of them.

Back down again at the bottom of the gate my heart pumps. looking  at the doors they are  tall, wide, huge, strong. For them to hold and 'contain' is easy. I reach my hand out again and feel the tar stained hulks of timber.

Then I realise that when the inhabitants of that world are pumped enough, the gates with be opened. My wants will mean nothing. Just like the film they will creak open, lumbering outwards to release a torrent of destruction, reaction. I will not be able to breath through the fear, I will be trampled without ever having been seen.

So to be asked "why dont you just face your fears?", makes me run. To be asked "why do you drink?", makes me fold in shame. To be asked anything without the speakers understanding hurts, I must hide. I will hide , I want to protect myself. I know the logic, I know the reasons to the gate, but nothing ever prepares you for how the stampede 'feels'.

Feelings eradicate logic, eradicate 'being sensible', eradicate who you really want to be. Brain triggered frontal cortex lame and useless. We must protect we must survive. That great gate crashes in an instance, the Orcs are free.

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!!!! 

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.

.........

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.

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.

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.