Finally, things start to make sense...

 

This week I got diagnosed with autism ... (the type that would have been called Asperger's before but has now been renamed to include all types - which I don't like & think purposely hides the increase in severe cases where often young adults cannot talk, are in nappies, in pain etc & who often regressed after vaccines from neurological damage - under the blanket term, which doesn't help any of us 😞)

That said I have seen many say that 'high functioning' autism (Asperger's) is jumping on the bandwagon of wanting to be diagnosed with autism or doing it for the attention...

 

And you know what, they are right. 😊 

 

As in jumping on that bandwagon finally something has made sense of all the struggles, failures, and 'negative traits' (called various things from angry, violent, stroppy, moody, anxious, stressy, controlling, rude, blunt, loner, shy, having no friends, weird, too sensitive) in my life, starting from my childhood. And I'd appreciate the attention for a minute to read my feelings on this diagnosis... 😘 after that I'm still just me, treat that as you want. x

It makes sense of the things that I genuinely couldn't cope with and so I felt weak, pathetic, lazy or stupid and wanting to know what the fuck was wrong with me as I couldn't do these supposedly normal and easy tasks... 😞

 

Of course many people will have some autistic traits, even several during stressful periods... but it's having them *all* in various ways, not coping with them and so having damaging effects on your life that's the difference. (A bit like your not 'a bit' pregnant when you feel sick on some mornings or have tender boobs! 🤣 You just have one symptom of pregnancy) 

Maybe people who know me will say oh yes, of course I can see that, or maybe they just see the high masking woman who will please others and chat to anyone. Sometimes putting on as much of a performance as Dave at a gig, often at the expense of her own comfort and energy levels 🤔

If they know me well they see I go home exhausted after gigs, often to the point of not being able to talk properly & find the right words - barely able to function.

It's not that I don't enjoy chatting to people, as I do, just I often find trying to think, understand jokes or even the intention behind something, to concentrate on the conversation and not put my foot in it or say something weird. (Have you noticed I can just start rambling on about something irrelevant 😬) Then especially when there's music in the background, others talking and flashing lights it can make it even more overwhelming! (It's me that's set the lights to the floor & the ceiling and who stops the strobes 😬)  

Often I get a full, pounding head feeling and can start to lose concentration by just having a conversation. It's not that I don't want to talk, it's just it gets too much sometimes. x 

Apparently I score very high in masking. 🤔 (Masking, being I will do what I think is appropriate and seen as normal to others, even against my own needs)

But if you think its just something to 'put up with and ignore'... have you ever been to the shops to get a few things on a list, when you couldn't easily find what you wanted, got stressed with the environment (music, people shouting, lights, too many people walking 'at' you on the pavement), not being able to see for looking what you need (its like the aisles are a jumble of thoughts and distractions), then forget what it was you wanted, look at your list again, try to think where it would logically be (so you can get there ASAP as you don't want to browse), then done something clumsy such as misjudge the escalator or say something that didn't make sense or tell some random stranger what you're doing 😬 (so people look at you weirdly), then struggled to stay concentrated on what you are doing there in the first place and not have an anxiety attack, having to take both rescue pastilles and say a mantra to stay calm, (and/or find someone to talk to!) ... to get home and then just collapse on the sofa crying as you can't do a simple task by yourself. Then massively struggle to compose and re focus yourself to continue with going out, even hours, later, or even simply doing a task such as cooking dinner that day? Being on the verge of tears when you do... 

While thinking "don't be so pathetic, what's wrong with you, normal people can do this alongside their day job in their break and you're a waste of space crying on the sofa as something simple was too much for you? Pull yourself together" ... and when you realise you can't, you just feel even more broken and useless. 😞

(It's why I do lots of online shopping and only plan to go to one, or maybe 2, shops at a time which are always near easy to access car parks, on roads and places I know, and then only on the days I feel I can cope... walking round like an average man shopping - being as quick and productive as possible while following a planned route! 😁)

Despite the fact I had taken online tests for Asperger's almost 20 years ago and got a really high score, I'd assumed my struggles since was 'just' brain injury as it clearly became worse after my brain surgery, but in finding out that even mild brain injury will make autism harder to mask, that and hormonal changes 😬 (which I've had issues with throughout my life and can't take synthetic hormones etc either - Dave said they sent me crazy!! 😬)

 ... and after all I couldn't have autism as I actually like going out and talking to people (in fact I can talk to people incessantly, plus rather too fast, especially when stressed) and know I am hyper empathetic 😬

Again I found out that this one sided talking and enjoying going out can be an autistic trait when combined with ADHD ("what? I can't be ADHD! I like sitting down too much! 😁 Oh wait, I have piles of unfinished tasks all around the house🙈, hobbies that I've not finished, what feels like 100 tabs open in my brain, and when I sit down I think of all the things I need to do! - Only to forget them when I get up🙄 - & apparently I showed the assessor several female ADHD traits at my assessment"😳) 

... and that hyper empathy is actually very common in autistic women. (It's mostly men who are the 'traditional autistic' un-empathetic types) 

I can't watch any violent or hospital films or even news clips as I literally feel like I'm the one being shot or dying, and I can often tell people's mood state by just looking at them as they walk in a room. (I've done that since a kid, be warned 😂) 

I've also been told I have anxiety and depression since I was a teen... PTSD since my surgery. When I was in hospital I was asked was I 'normally this stressed.' (I even walked out of there twice the day after surgery when I was still completely off balance, as I just couldn't cope in the ward and was given a silent side room to sit in for a while to cry!) 

Despite all this, for years I have been simultaneously torn between not wanting to put a label on something (which I hate!) and getting that label so I, and others, can finally understand who I am and that when I walk away and go and sit by myself they realise I'm not upset or angry with them, nor being rude, but am probably just overloaded and need to calm my brain.

 

"Maybe my almost practitioner level learning of various natural remedies, my doula training childbirth knowledge, my constant book supply on self improvement, as well as the hobbies I hyper focus on for months then just disappear, wasn't something every mother did?" 🤔🤣

 

Um...I've eaten porridge every morning for probably the best part of 30 years (apart from a year of having smoothies phase!) ...just changing if it's plain, with fruit or cocoa - in rotation. I still like it. 

Maybe seeing the lights flickering when I worked in shops as a teen was never normal, high pitched talking in crowds isn't usually exhausting, that drum & bass music is not really 'murder music' - despite the fact I feel I'd kill someone to turn it off! 😬 Oh and can't everyone smell someone's perfume from 20 metres away or next doors fabric conditioner on their washing on the line and wants to gag? and dont get me started on Lynx. 😁... I even bought a non toxic perfume recently and couldn't physically wear it as I felt sick, even when I washed my wrists after spraying it. 😂

I've always felt these things, but boy have they got harder since my brain surgery 😞 I could cope with it before my brain tumour surgery, but between that and perimenopause it means I cannot. The mask has fallen off...

And as you can tell... I like explaining myself. 😁 I can't easily just let something go knowing someone misunderstands me. Although I'm learning I often need to do this as quite often they won't, as they are simply not able to see another's view and that's not my issue. But I so struggle when someone is doing something I feel is wrong. (I can't listen to the news for my own sanity as the world is a lying, fucked up, manipulative state! If I do, sometimes even just hear a little, I get severely depressed and have to pull myself back out of it 😞) 

Now the positives 😊... I actually feel I'm good at organising a task I enjoy. I've redesigned both my front and back garden (digging up over 250 bags of soil so the boys could build Dave's office and I could have a nice garden area last year, and designed & helped concrete edge a path and bike park in the very overgrown front garden this year) and planned everything in order to minimise moving soil, using all the materials we had (I had it so the path I built used the exact amount of slate we already had) and making it aesthetically pleasing to me, with a bit of quirkiness! 

 

Yet while I'm doing something I'm enjoying, I forget to drink, only eat when someone calls me in, barely remembering to use the loo until I'm desperate! Covered in a mix of mud, sand and concrete for hours until I finish and suddenly the feeling of being covered in gunk is overwhelming and I need a shower 'now' as I'm getting really grumpy, while simultaneously realising I actually can't stand properly as I've totally overdone it, worn myself out and am starving! 😞

On my cognitive tests I had after my brain surgery, I was superior in visual processing, hence why I think I could see the exact design I wanted and replicate it to even the right ground level of soil! 😁

Yet tell me to dust and hoover the lounge and I procrastinate for days... Sorting that pile of no longer needed items after a tidy up... Make it months. If things 'need' to go to various places, not just the bin, it's just far too much ... so they stay there. Until I have a blitz on the house and do it all in one day! 🤣

Anyway... things have finally started to make sense. Maybe the neuro team were right that I dont have any obvious signs of a brain injury, maybe my nervous system and regulation has just always been a bit different and there's a reason why I've always been called the black sheep & need do things my own way, as I process things differently to many. 

 

I don't have any faults, I'm just me! 

 

 

 

 

I found this article is really helpful on explaining autism in females and why so many adults are now being diagnosed. https://www.aconsciousrethink.com/50266/why-are-so-many-adult-women-suddenly-discovering-theyre-autistic-and-what-are-the-signs-to-look-out-for/

 

 

 

 

Empty Inside

How can I explain to you,

What I can't even understand myself.

That I just feel empty inside.

Or that a part of me feels broken.

Just following the motions in living,

but half of me just feels dead.

I don't want to die, 

just not too sure I want to live either.

Well at least not like this.

I feel useless.

Worthless as I am.

Constantly a burden to you all.

When I'm tired, I can't think.

I can't cope with my body.

Don't want the constant struggle.

Aches, pains, brain fog, fatigue, 

always fucking hurting or needing to rest.

Having to take 5 minutes.

Trying to switch off.

Yet.

Never feeling rested.

Not able to fully relax.

My body pounding or exhausted.

Tingling, itching, sore or just plain numb.

That invisible itch in my skull.

constantly reminding me of that scene in Harry Potter -  

when Voldemort is inside him and he's just writhing from another's evil soul...

I have to be distracted to be happy.

Get myself out of my head. 

Switch off my negative feelings. 

But what the fuck can switch them off?

 

Every damn thing I enjoy I can only do for so long.

Before I hurt more, ache, feel dizzy, feel tired, can't think, can't type, 

forget what I'm doing while doing it.

Before someone notices that I'm not talking properly. 

That I can't pronounce something, 

Or said the wrong word.

Start dropping things.

My hands forgetting how to work correctly.

Can't see right.

Blurriness descending.

Hand eye coordination gone wrong.

Unable to move out the way.

 

While my head starts buzzing and pulling, 

Like its twisting inside.

Feeling all its weaknesses instantly. 

The physical and the mental scars start to breakdown.

And sleep tries to smother me.

Again...

 

Go to sleep.

Start again later.

Again.

Again.

Is it me just being weak?

Do I need to just get on with it?

Yet, if I try, I just fail.

I just don't know what to do.

The world is overwhelming. 

I don't know where to start.

There's just so much I need to do.

That I want to do.

But I just can't remember what. 

 

So I do nothing,

just scroll on my phone.

Until something reminds me.

Or I just want to cry.

Sink into the bedsheets forever.

Forever. 

Their tests say I'm fine

Because adrenaline hits well when faced with a challenge.

Something to make my life worthwhile.

A meaning.

Yet they tell me, 'Average, you're fine'.

No I'm not, 

And just maybe, just fucking maybe, 

have they thought this can't speak straight dipshit of a person was actually over average before?

That's,why I'm struggling now. 

Not that I've always been average,

but because my brain has changed.

Maybe that's why I can see through the bullshit?

The constant, drip feeding of the nudge team.

The 'stop you thinking' media.

The glaringly obvious manipulation and agendas.

The lies, the puppets, the distractions.

I'm blind to it all and see clearly at the same time.

And it hurts, it hurts so fucking much, that when they say to jump, others just say 'how high'.

Bending over to lose their rights, and their health, and their freedom... forever.

That of their children.

People I love.

I don't want to be part of that.

It breaks me to think of it.

I don't want to know.

I can't agree.

Exhausted even more from the pain of that division.

My babies...

I try and make plans. 

It works for a while.

Then exhaustion returns and I have to stop.

For a day, or a week.

How much is emotional and how much is physical I don't know? 

But I can't cope.

And after, I'm so behind on the daily chores that extras just aren't possible.

So when, or if, I ever catch up.

(When others help out)

I've just forgotten what I was doing...

Over and over.

Books are half read.

Clothes are half sewn.

Jewellery never finished.

The crochet needle still with wool on it.

Letters never written.

Survey results never published.

Blog posts in draft.

So many to do lists.

Their reminders silenced long ago.

And still the floor needs vacuuming, the washing putting on and the rubbish going to the tip!!

But it's too much.

So I just don't start.

And once again.

Tears just roll down my face. 

As I'm sitting there blankly.

Empty inside.

Until a customer knocks at our door,

And I wipe my damp face, put on a smile, and they never even know.

It feels like an act.

It's not me.

 

Or we go out.

Escape the reality 

Drowning in natures beauty instead.

Silence.

So healing.

So, so healing...

At gigs, I'm a different person.

The hidden me appears.

I even look different. 

I know I do.

I can feel it.

The switch has flipped.

I chat to anyone, I enjoy talking with others, laughing, 

Helping them, 

Being of use.

Being needed.

Being appreciated.

On top of it all for a while. 

Hyper focused and organised.

Content.

Happy.

Even joyous!

 

And then we get home.

The energy vampire in this house haunts me.

Tiredness returns.

My brain starts switching off.

My face changes.

A part of me disappears again.

It's been used up.

Washed away with the make up.

And the crap part returns.

Back to the me that I don't want to exist.

 

Empty.

 

Empty inside.

.

Photo memories ...

I was talking to Dave, my husband, recently about photos. That he has so many pictures of me that are totally unflattering - mainly as for some reason I tend to look as pissed as a fart in about 90% of the pictures anyone takes of me 🙄🤣 Even though I don't drink and am sometimes the only sober person in the shot, I tend to look the worst! 😬

 

He has photos of me that to many would be blackmail material ...countless double chins, or in a bikini, walking around in my undies, or bending over or some similar, not so flattering, and often rather wrinkly, angles.

 

But I just laugh at them, at me, as I honestly don't care. 

 

Why? 

 

As after this photo everything changed.

 

He took this photo of me 7 years ago today - the day before my brain surgery was due. We had just been told, that bar emergencies, I was having my surgery at noon the next day. 

 

As he took the photo, of me holding the matching fluffy toy rabbit to my 9year old son's one at home, whilst trying to type to friends online to hold me in their healing thoughts and prayers for tomorrow (it wasnt easy with vision affected by hydrocephalus); I was just sitting there wondering if this would be my last ever photo? Or maybe the last one of me ever being 'even vaguely normal' again? Would I forever be struggling, a burden to my family?

 

I was terrified. Possibly more terrified of waking up not fully with it or severely disabled and having to rely on others, than I was of not waking up at all. 

So when I woke up, while being wheeled out of the theatre 6.5 hours after entering it, seemingly intact, able to talk, then over the next day seemingly recovering as was expected, being able to walk (better than I had for months 🙏) yet still feeling as drunk as a skunk and struggling with it and the constant visual movement. All that mattered is that I had survived, plus had the hope that I would recover to something like a 'normal' life... 

 

I realised - nothing trivial mattered anymore.

 

These pictures are from the day following surgery,  the first when I was still in special care and wired up, with a drainage tube directly into my skull! But the relief is showing...along with actually looking like I struggling from having my head opened up for a few hours!! 😬😂

 

 

And with these pictures, what I did know, is how I thought I looked didn't matter one iota. 

 

It doesn't matter what others think of me, but what I think of myself and at that moment I had just love. I knew I needed to love myself, accept myself, trust myself...and life. Something I wasn't that good at doing.

 

I no longer cared if someone thought me ugly, wrinkly, grumpy, or anything... 

I knew right then I was totally unfit, looked like shit, had no energy, my face showing the trauma I'd just been through, totally at my worst... but I didn't care. 

 

I was alive. 

 

I was human and having a normal human response... So does anything else matter?

 

Many others are too scared to show their own humanity, and hide it under a veil of make up and fakeness... But why? 

 

Why do we all have to pretend? 

 

Pretend that we are skinnier, more toned, more beautiful, have the perfect pout or whatever...  just not actually being yourself. 

 

Like what the fuck is a filter about?! 🤔😂 To pretend you're 20 again? Hey, fuck it, I'm 50 next year, and I'm happy if I've got a few white hairs and wrinkles... It's better than not getting this old. My life could so easily have stopped at 42...

The last few months before these pictures were taken had shown me I could no longer pretend at all (not that I've ever dyed my hair, had my nails done or gone to a beautician!) I'd been reduced to being totally dependent on someone else to look after me, then more to save my life. (Not even able to see the mirror even if I wanted makeup. Although it would have soon been smudged all round my face from tears anyway!) What good was looking nice to please others? Absolutely fucking nothing! 

 

So, as long as no one is violating or ridiculing me ... You see what you get and post what you want. (and if you do want to ridicule, take a long look in the mirror first and work out why you feel its acceptable to laugh at others? Does it make you feel a better person as you actually feel worthless yourself? 🤔)

And yes, sometimes I do put on make up and dress up... I even have been trying to make myself fitter by going to the outside gym daily... But thats a whole different story.

7 years.

Yet it seems like it was only a year or so ago, but also forever, at the same time. 

 

Thanks again Tim 💖✨

The woman waiting for the plane.

She's waiting. Sitting on the hard, formal, chairs of the airport lounge with tears quietly running down her face. Others, talking excitedly, walk past but as they see her they turn their heads away to avoid eye contact. Pretending she's not there. Not one person offering even the kindness of a smile. The reassurance of a gaze.

To others, she doesn't feel she even exists. Invisible. Just like her thoughts. If only they knew. If only they could see. Would then someone be kind enough to smile? To offer a kind word? To just understand?

Life with anxiety. Where even a positive happy experience can be turned into a mountain of fear. Terrified of what could possibly go wrong. Trauma reoccurring. Just as it did before. Those experiences that over time shaped her into what others see as a nervous wreck.

"Sitting here waiting... waiting... I'm waiting for my holiday but inside I'm sitting here waiting for brain surgery again. Waiting for something where I have no control of the outcome and am terrified at the possible prospects.

So now, I'm overthinking all the 'what if's' and just feel scared. I don't know what will happen. I can never know.

I just have to trust. Again.

Accept that Post Traumatic Stress Disorder has reared in ugly head again and in that acknowledgement it's a kind of release.

A fear still, but a release.

I might be crying at an airport terminal, or tears streaming down my face on the plane. But it’s OK.

I trust it’s OK.

I have to.

There is no other way.

I've won far harder battles before."

It doesn't matter if her anxiety is caused from nervousness, excitement, or downright fear. Her body just feels the same, it responds in the same way. Blank. Empty. Full of terror. Her fuzzy brain magnifying once again into the floaty, wobbly feeling she has been accustomed to for the last 6 years.

 
The invisible injury of a cerebellar brain tumour and the surgery to remove it. The resulting brain fog, loss of balance, coordination, and fatigue. A brain injury. The loss of words when her brain feels like its shutting down. Unable to explain to even to those who love her and will listen. 

Other people, most of the time, think she looks vibrant, healthy, and well; they cannot see the inside injury. Her scar is invisible, some of it hidden by her trademark red curly hair, the rest is internal. Her trauma is in her brain. But then there is the judgement of her looking and sounding like she's drunk, when in fact she's just tired. Sometimes physically tired, but others just emotionally.

An invisible illness.

A life where she often doesn’t belong.

Only a few understand the fight every day to keep going. Finding the joy and happiness in life rather than be drowned by the fear, getting frustrated by the parts of her she lost in exchange for her life.

Yet, most days she smiles, talks to anyone, especially those that she can feel also need the comfort.  She can tell. She senses their pain. She knows the frequency they are resonating. Always there for anyone who needs her. Others saying she's the only one who cares. Who understands. Thanking her for helping them deal with their own anxiety and trauma. Thanking her for her support and encouragement, her advice and experience. No matter the cause.

She's the one who tries to be there. To stop others feeling that pain she's felt far too many times before, when she felt all alone and that nobody else understands. 

A life full of anxiety. Anxiety that was only able to be acknowledged by others when they classed it as a 'traumatic experience'. Her thoughts and her life before that didn't count. No one saw her pain, even those that knew what was happening. They turned the other way, although they knew the traumas she endured, but they never uttered a word, never gave her support. Never said sorry. Her pain has always been invisible. So, she just kept silent. She learnt that no one listened when she shouted anyway.

Her emotions never mattered to those they should have. They were a nuisance, not easy to face. It was easier to say she was too emotional and distract her. So as a consequence, they stayed bottled up inside until they could no longer stay hidden. When she had a valid ‘excuse’ to be upset. When it all exploded.

The release from finally being allowed to cry.

So now, once again, she sobs, tears releasing the memories hidden in her cells. The feelings that need to be expressed to be able to move on from. 

She may look weak, crying, and pathetic. Yet she is stronger than many in allowing others to see the real her. In keeping going when she wants to stop. Caring when others can't see pain. Loving when others see hate or anger. That’s stronger than most of those people that walked past her blankly, grabbing a beer on the plane, a drag on a cigarette, to keep them going. She’s facing her fears head on, letting them wash through her to be released.

As she fights every day, both from people not seeing her struggles nor those invisible fears and demons in her head.

The ones she wants to remove from the rest of the world too. 

The strange thing... when she sees others in that same place as herself. She smiles, asks are they OK. She listens. She cares.

Silently she sits on the plane, eyes shut, listening to a meditation on her phone, taking it one breath at a time. Allowing the physical discomfort in her head from the altitude of the plane to wash over her, along with the discomfort of her mind. Reminding herself it will pass. It always has.

Her husband is holding her hand, but right now she can’t even explain it to him, she can’t easily explain it to herself, plus her thoughts are too painful to say out loud, then there are others she wouldn’t want to hear what she says. She doesn’t need the judgement now. So, she smiles at him, says she’s OK and needs to zone out, while fully appreciating the strength and support his presence brings. She couldn’t do it alone.

She keeps going. She has to trust.

She's more than halfway there when she gets off the plane. The heat hitting her like a wall to bring her back to reality. Once again, she's fought the demons in her head, so now she’s feeling blank, exhausted, and empty. Yet still trying to act normal and not draw attention to herself when really, she just wants to sit down alone. Maybe get some sleep, the easiest way to be able to restart again. 

In the car ride, she can feel her soul start to relax... that familiar smell, the sound of crickets chirping, the warm air, the amazing views, the sights she's missed so much... she knows the way although she hadn't been back for years. 

It's been so hard to travel for a while. Brain surgery, having to be cared for, fatigued, not able to cope with planning or change. Not to mention that having no money from her husband losing his business while having to look after her and the family, playing a rather large part! Then lockdown, isolation, rules she couldn’t agree with…

Now, for the first time in decades, its just the two of them alone. 

Eventually, she arrives at the village she's known for 37 years... loved since she was 11. 

The place that as a child she never wanted to leave. Where she dreamed of living in a villa with an olive grove, being able to fall asleep hearing only the sound of the sea, of nature, of her joy.

Not much has changed. She just appreciates it even more now.

As she finally sits down in the sun. Feeling the much-needed warmth on her skin, hearing nothing but the sound of waves, leaves rustling in the breeze and the crickets. Swallows and butterflies flying all around her. 

She cries a bit more. But this time it's tears of joy. 

They are welcoming her home… once again she feels she belongs in this world. 

Her soul can finally start to heal.

 

💖💖💖💖💖

You're looking really well...

 

"You're looking really well, glad to see it. 😊"

It's a funny phrase that.  

 

As the judgement is already there - I think you look well, so you must be. I often think it is also when they switch off to the fact you have struggles.... just because my face, or more importantly, my hair scrubs up OK with a bit of attention! 😁

"You can't have a brain injury - you don't look like you do, you can do things right now."

"You can't have anxiety - you are confident, you look fit, healthy and attractive."

"You can't have depression - you chat and laugh with everyone."

Yet, if they had seen me just a couple of hours before they might have seen me...

 ...crying my heart out, curled up in my bed, wanting to stop the never ending chatter and fear programs going round and round my head. 

... having a full blown panic attack over a feeling I had, be it something as 'silly' as feeling full after eating or a micro second pain.

... freaking out and bawling my eyes out as a (C)PTSD memory has triggered me. An ambulance siren, a bleeping sound speeding up (even from a reversing car!), one of them damn blue surgical masks, or simply my vision blurring or feeling off balance for a bit. (Easy to do, when you need glasses for both near and far distance🙄)

... not able to go out alone for fear of what might happen to me, and no body will care or see, even if it's something serious. The shaking body after, if I have gone out and felt anxious, or the tears when I can't find my words and feel stupid. 

... panicking when stuck in a traffic jam, even if I have family with me, as I feel trapped and can't get out. No where to go.

... collapsing into bed. Unable to keep going as my brain has switched off, I'm struggling to talk, can't think clearly and just need sleep to recharge. 

... exhausted from doing the household chores, walking the dog round the park, cooking dinner.

... trying something creative and getting upset and frustrated as it looks like a child has done it, a mixture of poor hand control, no coordination and bad vision.

...chopping my finger when trying to cut veg, dropping the knife, the veggies, the oil lid, knocking the bottle over... After another, after another, after another. The insane frustration of a body that won't cooperate.

...feeling I'm nothing but a burden. Done nothing all day, but still can't work out how to cook the dinner.
 

Afraid to live. Afraid to die. Just wanting to sleep and it all go away. 💔

 

Does it mean that I can't have severe crippling anxiety at times, just because I enjoy talking to other people? 🤔

 

I find sitting in silence when alone but others are near anxiety provoking... I did my time of doing this knowing another person was struggling but not saying a word. It stresses me. So I need you to talk to me, to stop this fear based chatter starting up. Instead of wondering what you are thinking and finding the negative. I am the person that will talk to you on the tube... I can't stay silent. The more the energy is off, or I feel stressed... the more I talk. 🤐

Maybe I also want you to approve of me? See me as a person? Rather than this non entity that no one cares about... as the system certainly makes you feel invisible. 🫣😔

Not being the one that frequently feels useless as she can't work.  Being able to do something useful for a short time is SO needed, a feeling of worth for a short while. 

The tears are so closely hidden behind that smile. Yet, only those that really pay attention ever know they are there. 

But, please dont judge, and #bekind  💖🙏

#itsallinmyhead
#braintumoursurvivor
#invisibleillness
#invisibledisability
#cptsd
#anxietyawareness
#DepressionIsNotAJoke 

..

Trauma. Why don't Doctor's listen?

I mean I don't have a good track record of Dr's listening to me. They all but dismissed my brain tumour as anxiety and stress and offered me Diazepam. 🙄

Decades ago they told me the antibiotics I was taking hadn't triggered my bad gut issues, only for me to find in a medical book they certainly were linked - and when I stopped them the symptoms eased significantly. I've also been told over the years that other issues were not linked that were later proved correct. With each of my kids I was told in labour my opinion of my own body and instincts were wrong, that I wasn't near birth...and each time I was again proved right. With one child I actually said 'I'm waiting in the car park if they don't admit me as I know I need to be where I'm giving birth'... despite them saying I wasn't even in labour. He was born 40 minutes later. 😬 The two following home births they told me again I would be ages, yet both were born within a couple of hours from the first twinge. With the youngest the home birth midwife even left! She arrived back less than an hour later, moaning she had just put her dinner on, to basically catch the baby. 🤭

So when in 2019, I finally got a neuropsychology appointment for what I'd asked my neurosurgeon for help with - in testing my cognitive function and if my hand, vision, speech or coordination could be improved? - I was thinking I would get somewhere at last. It had only taken over 3 years since my surgery, which was long enough.

But... I saw this neuropsychologist, and while she was vaguely understanding and helpful at the start, once she started typing my history into her computer and realised I had previously been diagnosed with anxiety and depression her attitude changed. She then implied it was just this reoccurring again, and basically what did I expect as I had refused to take anti depressants for it. I was just causing my own problems!!! 🤬

 

I was livid. 

 

Yes I know I have had issues in the past  - because of TRAUMA!!! I had a boyfriend drown in an accident, a week after telling me he would be dead within a week 🤯 and past abuse that had caught up with me. But at the time they happened I was told to basically forget about my thoughts, never allowed to actually get help with processing them. 

 

However, in 2016 on dealing with the trauma of being told I was fine, when I wasn't,  then urgent brain surgery,  feeling dizzy and not with it for weeks... this subsequent trauma had brought to the surface all my past traumas.

 

So with this information, and the fact she thought I seemed OK at my appointment, she decided I didn't need any cognitive assessments that day as planned, and thought I had Functional Neurological Disorder -FND (where there is no physical cause for the issues, although they agree the symptoms are real) & I just needed psychiatric help.

 

Now if she had spoken to me and explained she thought that psychiatry sessions would help me - that they would help address the traumas, explained why she thought I had FND rather than brain injury from either the hydrocephalus, my tumour or the surgery; understood and accepted my reasons for refusing antidepressants and also said she would still test me for the cognitive assessments either as planned, or in time, I could have accepted it easier.  

 

But she didn't, she basically insulted me, laughed at me and then dismissed me.

 

Anyway.. a lot of fuck ups and time later (not helped by the covid bollocks of them stopping all but urgent medical treatment) I finally saw a neuropsychiatrist last year, had regular follow up psychiatry sessions (although again stopping with more silly covid restrictions over Christmas) and while he helped loads in that he validated my feelings that had previously been dismissed, reminded me of techniques to help with stress and to not feel so bad about myself when I simply have times I can't find the correct words and was a lovely, helpful person. We agreed that my hands, vision, speech etc hadn't changed much.

Then after going to a booked face to face appointment with the main neuropsychiatrist, I got to the hospital to find out it was changed to a phone conversation! (And they never notified me of the change in plans) So I sat in a hospital room to talk to her on the phone -  a 2 1/2  hour round trip to use the phone! 🙄

 

BUT.... she basically agreed the same. Yes, my psychology sessions had improved my being. (Why can't they understand that just someone listening and caring improves your being, much less an 'official' psychiatrist who confirmed that my feelings were right and that I had been treated badly... it wasn't just my failings or weakness.) Yet as my physical issues hadn't much changed she would be referring me back to the clinical neuropsychologist in the main part of the hospital's neurology department - that does assessments etc - rather than just the psychology I had been having in the mental health building on the outside of the main hospital. (This is a whole other conversation as to why one is hidden in the back of the hospital grounds?!😬) I now have my diagnoses changed to 'an element of FND', as well as 'delayed grief/adjustment disorder/PTSD component'.  

Could this not just be..?

 

 'Still struggling at times from the trauma of being ignored and then needing a life saving, but life changing, surgery'

Yet with this confirmation, I honestly didn't know whether to laugh, cry or scream.

 

 "Why don't you fucking listen to your patients?" 

 

 

No, it couldn't have been that my brain got injured!? 

 

 

... that having hydrocephalus before the op, needing my surgery to be brought forward as urgent due to this issue, taking a 3cm lump out of my brain along with the intermingled brain tissue, 6 hours of brain surgery, having 40 staples in my scalp to hold it all together, or that I was told would kill me if they didn't treat soon ... 

 

 

Of course these wouldn't cause any fucking issues would they? 🤯 

It had to all be me and my psychological issues, as I have been diagnosed with anxiety and depression in the past... 🤬

 

 

 

 

 

Then literally the day I was told that I am being referred back I saw this video from Dr Jessica Taylor on how women with mental health disorders are flagged up on their medical records. This might explain a lot.

 

Is this why over the years they have ignored me, tried to drug me and blame things on any other problem than what it is?

 

Trauma. 

 

 

Be it emotional trauma from situations that I couldn't cope with, ones I had tried to mentally block out so I could keep functioning, or physical trauma in that my brain had been actually opened up and pulled apart! 

 

Yet for the second time is as many months I have been given confirmation that I was right all along...

 

 

I have just got my letter for my assessment again in May, 2.5 years from the last time I was supposed to get this done. 

 

Before someone decided to not listen to me.

 

 

You'd think they'd listen as I know when the issues started and what I feel about them.

 

It would save a LOT of time.

 

 

I also have bought Dr Jessica Taylor's new book  Sexy But Psycho. I'm looking forwards to reading it.

 

"Angry, opinionated, mouthy, aggressive, hysterical, mad, disordered, crazy, psycho, delusional, borderline, hormonal . . . Women have long been pathologized, locked up and medicated for not conforming to whichever norms or stereotypes are expected of them in that time and space. Sexy But Psycho is a challenging and uncomfortable book which seeks to explore the way professionals and society at large pathologize and sexualise women and girls.

Utilising decades of research, real case studies and new data from her own work, Dr Taylor's book will critically analyse the way we label women with personality disorders. Why are women and girls pathologized for being angry about oppression and abuse? How have so many women been duped into believing that they are mentally ill, for having normal and natural reactions to their experiences? Sexy But Psycho argues that there is a specific purpose to convincing women and girls that they are mentally ill, as the world avoids addressing violence against women and their centuries of ignored trauma."