Thursday, 23 February 2023

Prayer and nature

Today after my dog walk round the park, I once again sat on my favourite tree by the gates. Sitting right next to the road where my mother, my aunt, and I know my grandfather walked to school on the then dirt track.

Where on his way to school he used to go scrumping apples from the then orchard where I am now sitting. Where my great-grandmother also had walked to that same school well over 120 years ago. My great-grandparents and my great-great-grandparents probably also walking past this spot on their way to church for several decades. 

Where my family had been living since 1875, always less than 130 metres from my house!

As I sat there, on this spot that connects me to them,  I once again thought about my ancestors and the many times I've prayed for them to support me, give me the strength I need to continue.


And I realised sometimes that's all we have left... prayer.




Many people on my brain tumour group say they are sending prayers to others, many say they pray themselves, that praying gives them strength and it's there when there is nothing else left.

It doesn't matter to me of you call it God Allah, Jesus, Grace or the Divine Source . The intention is the same.

The knowing there is a bigger plan is the same.

The love is the same.



And with that thought and the tears rolling down my face, a robin appeared in the branches of the tree I was sitting. Singing its amazing song. Stretching its body, up and down to balance itself against the movement of the branch in the wind. trying to keep its balance. Going with the flow of life...

Prayer and nature, sometimes it's all we've got. 

But sometimes it's all we need. πŸ™πŸŒ±πŸ’–πŸ’« 

 

My Great-Grandparents

My Grandad riding (backwards!) on the road at the side of the park!

 

..

Saturday, 11 February 2023

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.

 


The Woman Waiting for the Plane

πŸ’–πŸ’–πŸ’–πŸ’–πŸ’–


Friday, 3 February 2023

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 distanceπŸ™„)


... 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. πŸ’”

 


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


 

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. πŸ«£πŸ˜”


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  πŸ’–πŸ™


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






..

Saturday, 12 March 2022

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. πŸ™„

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! πŸ™„
 
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."