Just like sometimes in life there are no words
This blog post ( for now anyway) has no title…
It has plenty feeling just no words
The feelings are non stop
Like the thoughts
Intrusive, Upsetting, Unpredictable and most of all – UNWANTED!
Is it me – or is everybody really annoying ?
Obviously I already know the actual answer – It MUST be me
Usually I know I am easy going and good natured
Sure I can get a bit upset and lose my cool sometimes
But it always took A LOT
Much more than the friends and family around me
I know this for sure because they have told me on numerous occasions through my life
“Stop being so understanding all the time – just get annoyed like everyone else”
“Your too soft that’s your problem – I would just say no”
“Your too easy going – I would have to say something and get them told”
But I always naturally could see the ‘other persons’ point of view
I would be able to explain to myself the ‘why’ they are doing this and this explanation would be good enough to prevent me causing an unnecessary argument – or cause any bad feeling… because I felt I had an understanding of their actions/behaviour/opinion.
This could explain why I spent years working within the care sector in one way or another – and ultimately what led me down the path to become a therapist.
The Good Old Days
I have also always been commended on my patience as well as my understanding,
My ability to ‘put myself in their shoes’ or ‘ look at it through their eyes’ was something that came automatically to me – even if I was in a situation I was hurt or angry.
So much has changed – I am not sure where or when this monster was created
whether this happened overnight or slowly crept up on me
But her presence is undeniable
As much as I want to be – and still feel like the same old me inside
I’m unsure if Tourettes or the Menopause is the biggest contributor to this ‘other’ side of me ..
This is a side of me I neither recognise nor like
But I know that my mind NEVER stops – constantly flashing images of the fatal danger about to happen in the next few seconds to the person I’m trying to have a conversation with… or the person/dog in the room I’m sitting in
for example I went for a walk into the countryside with my friend and our dogs and within minutes and walking only a few hundred feet my mind had already seen a telegraph pole fall on top of her crushing her … the electric cable above us snapping and falling onto her electrocuting her… the other 2 dogs run off terrified over the field and get shot by the farmer …
All this running through my head as I do my best to have a ‘normal’ conversation
“So how are you doing Pauline?”
“I’m okay , yeah I’m good”
I am okay (if I ignore the imaginary ‘bogie man’ that in my head jumps out from behind the hedgerow wielding a giant crop cutting scythe ready to cut someone in half)
Yeah I AM good – ( if I can just stop the flashing images of everyone and everything around me that I care about being somehow horrifically maimed or killed)
Add to these continual morbid outcome images the now almost constant feeling of helplessness – not only with regard to the unwanted intrusive thoughts – but also in regard to my emotions
It seems the once understanding patient Pauline has turned into an unpredictable emotional nail bomb
The sudden onset of unwarranted emotions is something I initially linked to my age – but learning more about Tourette and the co-morbid conditions that can come with it, has made me consider that the TS may well be the cause of the outbursts..
I don’t know why – but my mind thinks is big and clever to ‘over react’ to simple situations I would have previously just been able to ignore …
I must be a nightmare to live with for both Craig and my 3 Amigos – I am almost constantly on edge seeing imaginary danger when Craig is doing practically anything – even worse if he is doing something with a power tool .. I worry the open fire we love so much is going to spark and burn one of the dogs lying in front of it.
As soon as the dogs get comfy in front of the lovely inviting flames – I see the pandemonium that ensues when the hot ember burns the poor sleeping dog – I get the feeling of guilt that I knew it was going to happen and didn’t move the dog away.
The image of my loved ones on a mortuary slab having suffered a horrific death is repeated on a loop … changing each time to a different person I care about and a different way of dying in a horrific way ..
These are just a sample of my intrusive thoughts regarding death –
There are MANY more –
All the time I have this feeling like its my fault – so far I have used all the tools and techniques I have under my belt and nothing makes any difference for any length of time..
I most commonly use EFT (Tapping) as mentioned in a previous post – But it hasn’t stopped these thoughts and the feelings associated with them completely – however it seems to help in the short term .. before more intrusive thoughts and feelings arrive….
The other really difficult change in me is my tolerance levels –
whereas before I could tolerate noise and commotion without any issue – coming from a family of 5 and being the youngest, was what I thought gave me the coping mechanisms for this.
But so much has changed
Gone is the love of playing drums on Rock Band LOUD with a group of friends –
Gone is the enjoyment of having a few friends round at the same time –
Gone is the ability to concentrate and stay focused with background noise
Gone is the talent of being able to ‘just ignore it’
Gone it seems is the capability to ‘just let it go’
Instead I find myself ready to either burst with temper or tears at the sound of the dogs running around playing – the noise their feet make on the laminate never used to trouble me … but now its like someone playing drums in my brain – and I cant even hear myself think
It so unfair – I love them and want them to love each other – which of course involves a little noise now and then when they are playing and having fun chasing each other.
But with each tapping sound on the floor my heart rate seems to increase – and of course I have these images flashing into my head where one dog mauls the other one to pieces!..
If you add the sound of the dogs – the tv in the background .. the sound of the outside world as people pass by – then perhaps add to THAT another person who wants to ‘talk’
SHUT UP WORLD
Its like the stimulation of the normal world is too much for me – the sound of people talking .. even worse if they are loud …or fast.. too much movement on the tv even seems to make me unable to concentrate… people touching me or being too close is even having an affect on me now …?!?!?
my nickname growing up was ‘Cuddles’ because I was so ‘touchy feely’ and affectionate – fast forward to now and any stimulation be it even a touch on the arm sets my tics and my flashing images off – neither are what you want sitting down to watch a bit tv with your other half of a Saturday night
The rational part of me obviously does my upmost to poo poo these images by reassuring myself how unlikely it is – but my mind is as sharp as tack and looking to convince me so will then argue back with myself giving me a scenario that then leads to the very image that I was rationalising
Of course my mind doesn’t have the decency to just give me upsetting images to deal with – oh no!
I also have a running commentary that is somewhat derogatory towards myself and even though I have used all my tricks to quieten this unwanted opinion – including playing circus music behind it and even imagining the voice as sounding all high pitched like Mickey Mouse – and this has definitely helped I’m sure of it – But as yet I have to find the OFF switch
This internal voice is a constant reminder of uncomfortable facts –
“this us not how it was meant to all be”
“why would Craig want to be with you – you are nothing like the person he met – he didn’t sign up for this – who would ?”
“You are bringing NOTHING to this relationship except negative”
“He would be better off with someone who is actually bringing something to the relationship”
I look at myself in the mirror now and I hardly know this person looking back at me
I feel I have no purpose or value like I used to
The biggest feeling I seem to carry all the time is guilt – guilt about everything –
Guilt that I am not the partner Craig thought he was getting when he started dating a self employed independent woman… I wont go out to eat because I worry that my tics offend someone around me and spoil what could be a very important meal for them. I avoid going to any kind of shop because I know I will tic and draw attention to myself. So instead I choose to let him go by himself and then just hope he is home quick because until he is – I have imagined every conceivable accident/ mugging/shop burglary possible.
Guilt that I am not able to be just Kyles mum when he comes to visit – without the shouting and swearing and jerking coming into play – no longer do we play Rock Band, no longer do we walk the dogs together , no longer to we go for a wee lunch date that turns into a sesh…. I feel his embarrassment of introducing me to anyone new in his life and having to ‘explain’ or make excuses for me.. Guilt I’m no longer a regular source of home cooked meals – my hands get too sore so either Craig cooks or even Kyle does – or we phone in..
I feel guilt that I am not the person I used to be even for my friends – my mind makes it much more difficult to be a good listener like I used to be, I forget so much that they have already told me.. They have to accept that I wont be eating out with them – or coming to social events in big crowds..
I feel guilt I am not the dog mamma I was before I was too embarrassed to go outside alone and just go for a long walk with my 4 legged friends .. I get annoyed at them just having fun. I watch them all pile on top of each other to sit on Craig and I cant help but wonder if they are sensing the rollercoaster that is my mind and emotions and this is putting them off being beside me. I have had dogs all my life and all of them would sit by me before anyone else ..
I feel guilty that when Mojo gets excited and makes a noise I lose control in some way – either by ticcing more or feeling instant rage at the high pitched sound making my brain bleed… where is that patience? I look at her wee face and feel guilt I cant just ignore her wee foibles – she is the gentlest natured dog ever why cant I give her the patience she deserves only being a baby herself..
GUILT GUILT GUILT
I feel guilty I am NOTHING like the person I thought I was
I liked her better – she was in control of her thoughts and her feelings – and especially she was in control of her SELF – She was a fun loving optimist who always managed to see the funny side of a situation – she was a person who helped others to create HUGE changes in their lives … She brought something worthwhile to the party that is life.
I genuinely feel bad for the people around me that have to put up with me now
I have all this stuff in my head I cant control – and this is making me hard to live with
I know this – not because they have told me
but because I live with me too – and I am doing my own head in
The therapist part of my me will not let me accept that this ticcing and co morbid OCD stuff is anything other than temporary and I will discover how to be in control of myself again – I will be free from tics and tempers –
Then I tell myself to face facts – I have Tourette – I should just learn to accept that and stop kidding myself that I will ever be able to actually tame this beast
Maybe I have always had it?… living with my mother I would have had any sign of a tic beaten out of me .. so maybe I was holding them all in? I’ve always been a ‘fidget’ and for a long time I know I’ve talked to myself – like when doing a task in the kitchen or something. my friends just laughed and I would pass it off as talking to the dog..
now I am wondering was I ??
It all one me saying I didn’t have it .. I cant ask any of my family because I have had no contact with my mother for almost 25 years – and my dad has passed in this time .. My siblings have came in and out of my life as they pleased – being the youngest for a very long time I put up with this happily .. I loved them and whenever they wanted to show that they cared about me that was welcomed .. of course I am a lot longer in the tooth now and I realise all my WSN stuff so I make the choice now for none of my siblings to be in my life – I wish them all well – and I still love them – but they will never be a part of my life again – too many times they have picked me up then dropped me when they no longer needed something from me… Being estranged from my family has meant I haven’t kept in touch with extended family such as aunts or cousins ,, I suppose that’s because I was still young when contact with my parents was severed and my gut feeling was – if my own parents didn’t want me in their lives then why would any one elses parents? So although many of my extended family live fairly nearby me – we never see each other .. its just the way its always been
So when push comes to shove and the medical profession are asking me if anyone in my family had a ticcing disorder — I don’t know for sure – half my life I haven’t known them.
My mother ( and one of my sisters) used to say “mh mm” to themselves – I never had the guts to ask my mother .. but my sister was unaware she was doing it – so maybe TS IS in my family ..
And it does seem that every time I put a comment on a post/thread regarding TS and I mention that I have only had it for a few years – I ALWAYS get at least one person attacking the information – saying its impossible to get it in adulthood . The condition is diagnosed in teenage years if not before . I am told this over and over again .
Some people get so angry at my ‘claim’ they demand ‘proof’ – I am unsure what it is they want from me that would merit being proof .
My PROOF is I spend my waking hours twitching and tensing muscles and joints I forgot I had….. I can barely sit still to properly eat a meal all the way through without dribbling it down my chin or having one arm stuck in the air like superman.. I quite often have to clap to be able to swallow my mouthful and even then my throat will ‘tic’ and close meaning no matter how hungry I am I am unable to swallow I know I will be sick if I try …. All the while I am shouting out random words and pointing … Of course I do my best not to give energy to the REAL LIVE Final Destination thoughts that begin as soon as I open my eyes for fear of people thinking I am actually going off my head…. Sudden onset of ‘brain fog’ that seems to act as a paralyser and keeps me in the same spot/position for a length of time … how long i am not truly sure … It like someone hits pause on me and I am ‘stuck’ until some sort of stimulation like dork barking or someone talking ‘snaps’ me out of it… I lose A LOT of time with this……..I have to only wear specific clothes against my skin – unfortunately that is predominantly soft flannelly fleecy type material – and mostly that is pyjamas – .. anything else against my skin and my tics get set of because it feels like hundreds of creepy crawlies all over my skin…. I have to get out of bed when the duvet cover material feels ‘wrong’ and is keeping me awake and making me tic just having it touch my skin….. I have had to throw away all my bedding and replace with 1000 thread count Egyptian cotton -…. I have to take medicine to help me relax long enough to slow the tics, and the slow the thoughts of monsters and murderers in the dark just enough for me to fall asleep…. my dreams are then usually filled with more monsters and terror resulting in a restless sleep ….. Only to wake up with my whole body sore and stiff as if I have ran a marathon ( and its not my bed because its fabulously comfortable) ….my hands and fingers aching from the tense position I have inevitably been holding them in throughout the night…making using them agony… .It can take a full hour to have dexterity back in my fingers and hands .. and sometimes just as long with my feet….. Then the world just starts with its noise all over again…….. hand in hand throughout the day/night with all this is the ongoing change in my body temperature – from freezing and in full fleece – to stripping off down and into to a vest in record time …
off – on – off – on – off – on!
Maybe I actually am better off in a padded silent room –
I’m sure if I read this post back I will think it
or maybe even delete it altogether
but I’m deciding not to re read it and just publish it – warts and all
I hate having Tourette
But then I’m pretty sure those around me hate me having TS MORE!
I don’t think I’d want to be around me