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/

 

 

 

 

Cerebellum Survey Results

Here are the results from the cerebellum survey I asked on my Hemangioblastoma Brain Tumour group on Facebook.The results are only from those who had a cerebellar tumour (not from those with a tumour elsewhere) and the subsequent surgery to remove it.

When I copied these results 54 people had responded.

Q1

When was your tumour removed? (latest surgery if had more than one operation)

Q2

Do you struggle with these issues?

The answers to 'other' were:

-Headache and occasional vision blurring.
-Overwhelm, then essentially mental “shut down” when faced with more than 1 or 2 things (even  simple tasks) to do at a time.
-Balance.
-Balance to some extent - e.g. can't turn head quickly from left to right and vertigo-like sensations (whether up high or not)
-Horizontal vertigo randomly
-Phantosmia - I smell burning sometimes, cigarettes, or more commonly like candles. Balance is technically fine in “tests” by doc/physio but I can wobble all over the place some days.
-Inability to multitask.
-Cognitive issues - problems reading faces, hearing what's being spoken.
-Tinnitus, eyesight issues, tingling down the arms, pain passing from my forehead along my head to my neck, loss of movement
-Very poor balance and mobility issues. Need to use a walking aid when outside my home.
-Hyperacussis (increased sensitivity to sound and a low tolerance for environmental noise), anxiety.
-Right hand tremor/
-Hard to hear with multiple sources of sound when tired.

 

Q3

Do you have any of these functional issues?

Q4

Are you affected by any of these?

Q5

Have your symptoms changed over the time since your surgery?

Q6

Do you class yourself as having a disability?

Q7

Have you been diagnosed with any related medical conditions since your surgery?

Other :

-The neurologist doesn't think the memory issues would be related to the tumor, different part of the brain, but his science is wrong because the whole body holds memory, not just one place. Eventually science will catch up to itself.
-Von Hippel-Lindau Syndrome (VHL)
-Stroke, Holmes Tremor
-Cerebrospinal fluid (CSF) issues
-Functional Neurological Disorder (FND), Post-traumatic stress disorder (PTSD)
-Additional tumor on spine
-Hemorrhage 1 week post op
-VHL
-Under-active thyroid/ peripheral neuropathy/ fibromyalgia/
-Recurrence of tumour in cerebellum and additional tumours on brain stem and spine
-Short term memory loss
-Spinal stenosis (probably caused by imbalance issues), Lynch Syndrome (MSH6 gene)
-Holmes tremor. New tumour has grown
-Surgery worsened compressed nerve issues in my neck from positioning on the surgery table
-Hydrocephalus
-Meningioma 

 

Q8

Do your issues affect you…

Other:

-They come and go
-Anxiety is there most of the time
-Hardly ever once every few months if that 

 

Q9

Are you?

Q10

What is your age group?

Q11

In general, are your issues…

My first thought on seeing these results was 

'Its not just me!', 

combined with almost instantly with the sadness and anger of 

'Why dont they believe us?'

 

From Q 2:

73% struggle with fatigue.

49% have brain fog

49% have issues with concentration and attention

45% have memory issues

43% struggle to find the correct words

37% forgetful

35% confusion/ decreased clarity of thought

24% struggle to type/write words

23% say the wrong words 

17% spelling has got worse

Although from my experience of the various medical professionals - only fatigue and, maybe, brain fog are related to the tumour/cerebellum, the rest have nothing to do with it! Categorically saying to me speech issues such as these have nothing to do with the cerebellum! Therefore, blaming my cognitive issues on 'Functional' disorders instead, and definitely implying its my thoughts about them and nothing to do with my tumour, surgery or cerebellar damage.

Yet the lowest score here is 17%, saying their spelling has also got worse. Something when I have explained to various neuro doctors has changed for me - that I now have to really think and spell out words, and get the tense of words such as 'send' and 'sent' constantly wrong, rather than just instantly write or say them as I did before - I have never received more than a look of total derision and a 'it's not linked' for,

Only 7% say they dont have any of these issues.

 

From Q3:

55% balance issues/ataxia

54% feel dizzy/wobbly (these top 2 are accepted by doctors as linked to cerebellum)

47% sensitive to sounds/too much conversation (this Dr's imply is unusual for the cerebellum)

32% weakness

32% whole body coordination/clumsy

30% hand control (I have been told by all the neuro Dr's that my hand issues are nothing to do with my tumour/surgery, although a physiotherapist said my issues were clearly stemming from my neck or brain - she couldn't test nerve points past my neck to distinguish which)

28% tremor/twitching/shaking

23% blurry vision  (Again, vision issues are supposedly not linked by the neurologists or ophthalmologists I've seen, despite several also having some of these same vision problems at times?!)

23% vision that changes

20% sensitive to lights/flickering

20%  swallowing issues (again been told it's not linked)

15% double vision 

4% nystagmus /eyes flicker

13% have none

Q4

63% Anxiety

34% easily overwhelmed

34% depression

34% no patience/short tempered

32% fight or flight/startle response exaggerated

28% nerve issues in head

26% nerve issues in body

24% nausea

20% sexual dysfunction/loss of libido

19% insomnia

19% motion sickness 

4% psychiatric issues

8% have none 

Some of these the Dr's acknowledge may be an issue, but more as a result of trauma and the stress than a possibility it could be related to the cerebellum. (Which it could be? but how to Dr's know if we've never even been asked?) Yet only 8% of us have none of these concerns.

 

Q11

61% worse when tired

50% worse when stressed

43% worse when anxious

28% variable for no clear reason

20% constantly the same 

Again, the amount of times I have been looked at like I am lying, or strongly exaggerating at the best, when I explain that my symptoms can change vastly. Yet clearly it's not just me!

'One day I barely notice, the next I can barely cope with them.' 

Also I feel I'm not believed that when they see me they think I seem 'fine' and so they don't see an issue. I am sure the only reason I am normally OK when there is that I get a burst of adrenaline on the 'stress' of being back at the hospital and never being believed - which actually boosts my thoughts and responses. Plus, that also explains why I feel 'burnt out' shortly afterwards and almost fall asleep or can't talk properly when I get home. 

 

Things need to change. 

 

Cerebellum studies have been done since the 90's with Jeremy Schmahmann's pioneering work on the cerebellum and cognition and changed the belief of how the cerebellum works... 

... isn't it about times things start to change within the actual medical profession too? 

 

.

Cerebellum - it isn't just about balance!

I got told at some point after my surgery that having a part of my cerebellum removed is the best area of the brain to be removed as "it doesn't really cause any issues".

Now while I fully accept that it would be far better than many areas, removing a 3cm area of brain and the required surgery certainly doesn't mean you will always have absolutely no issues!

Many a time since I gave spoken to a GP, or even a neuro specialist about the cerebellum's links with cognitive function, speech, anxiety or depression and they have looked at me blankly. They never say, 'I don't think it's linked to the area of the cerebellum your tumour was' or say anything to imply that I have understood it incorrectly - instead they clearly don't have a clue what I'm even talking about!

 

They sometimes say 'it mainly controls balance', then add 'you don't seem that affected with this'. But I've also been told "I've not heard of that link before." 

 

 

Are they the actual experts? 

Do doctors, even brain specialists, really know more than their patients?

 

Or could actually asking the patients 

 

'What things do you struggle with now?'

 

actually help both the medical profession and us patients out?!!

 

Even on Wikipedia it says this about Cerebellar Cognitive Affective Syndrome (CCAS)

"They reported that patients with injury isolated to the cerebellum may demonstrate distractibility, hyperactivity, impulsiveness, disinhibition, anxiety, ritualistic and stereotypical behaviors, illogical thought and lack of empathy, aggression, irritability, ruminative and obsessive behaviors, dysphoria and depression, tactile defensiveness and sensory overload, apathy, childlike behavior, and inability to comprehend social boundaries and assign ulterior motives"

This article 'The mysterious, multifaceted cerebellum', being a really easy to read and informative, the end of it saying.  

 

"What’s clear, however, is that the cerebellum can no longer be ignored — and that its connections throughout the brain and contributions to brain function may be much broader than scientists had initially imagined."

 

From - https://knowablemagazine.org/article/mind/2020/what-does-the-cerebellum-do

 

There are also these, basic but interesting, links (that every neuro doctor should know!) about cerebellum damage and its side effects.

Cerebellum Brain Damage: What Causes It & How Rehabilitation Works 

"Of note, the cerebellum also helps to regulate other visual functions, such as the vestibulo-ocular reflex (VOR). The VOR is what allows you to continue seeing a stable picture even when while you are moving around. These visual functions may also be affected by cerebellum brain damage."

This interests me as before I knew about my tumour, I complained to the GP saying my vision felt like I was looking through a video - moving up and down as I walked. Plus I have never felt my visual perception is back to normal afterwards, I can turn my head and lose balance and so can't look backwards easily, often feeling things are just not fully still around me. But again, I just get looked at like I spoke to an alien if I discuss it with a Dr!
 

Plus this article that everyone who has has, or knows someone who has had a brain injury should read.

Dealing with Sensory Overload After Brain Injury

Many of these approaches I naturally realised helped me long before I read this, and no doctor or therapist has yet to ask me, let alone help with them!

Also, as I had hydrocephalus before my operation, all parts of my brain must have been struggling beforehand. How can they know if being in this state for weeks caused damage or not? It drives me insane when they say its nothing to do with my surgery and yet the issues only started just AFTER it. Many a time I have said, it could have been the tumour, the hydrocephalus, the surgery, the swelling after... and I'm not blaming the hospital or staff in any way - but please acknowledge there is a problem! 

I also set up a survey for my Hemangioblastoma brain tumour group - asking those who had cerebellar tumours to list their current issues. The results are exactly what I have been saying for years and are so very similar, yet we are all ignored (and I cried when I read them) 

I will try and publish the results in another blog post soon x

And please search my previous blog posts on the cerebellum and its side effects for me. https://benignbraintumour.blogspot.com/search/label/Cerebellum

Missing area in cerebellum

The outside is missing!

Showing how messed up my neck is too!

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 

..

New Year 2022

Don't want to write a 'traditional and polite' but at the moment trite Happy New Year message today, not as I don't wish everyone happiness (as I try my best to do that whatever the damn day is to those that are genuinely kind people -which most are 💖- free hugs are always offered x) but as it just seems bollocks, a complete head up your own arse and oblivious to reality load of shite that I can't comply with.

This year has been awful, worse than having part of your brain scooped out and dealing with the after effects. 2020 and 2021 have made 2016 look like a walk in the fucking park. It was a practice for this shitshow ...  in could I keep going when inside everything was breaking. A practice in trusting and that life is on our side, that good always triumphs evil and our soul contracts are here to evolve us. 💫💖💞

This year I have been destroyed as the strength, resilience and independence I thought both some of my loved ones and most people had, I realised was a crock of shit. They caved at the first or second hurdle, gave into bullies and liars, have defiled their (or even worse their kids) bodies and souls and didn't realise their brain had been manipulated into fear. I have grieved more times than I want to think about, cried to my core about what is happening, fearing for their and humanity's future and wondering where have the rebels, warriors,  black sheep and even those with a bit of spunk left have gone?

I've walked through DIY stores watching big strong men walking around with their face nappy on like good obedient slaves, didn't know whether to laugh or cry at people sitting in their plastic boxes with 'good boy' stickers on in a hospital waiting room, people wearing their muzzles to walk to the loo or move between what they are doing , but then take them off in the same fucking room for whatever activity is acceptable... 

When I just simply said NO. 

Yet, I'm not physically strong, I have massive anxiety at times, PTSD from looking at surgical blue masks, too much trauma than I want to mention, plus have issues where I can't even verbalise the right words- especially when stressed or questioned. But I am NOT compromising my soul. 

Like how the fuck are you existing? Don't you realise you are being laughed at by those orchestrating this farce? Or has the TV washed your brain and the toxins dumbed you down from even being able to think what YOU feel inside? 

It's no worse than when a government wants to change your view that a certain type of person is evil enough that we need to bomb and kill them... but the only evil are the ones telling others to throw the bombs in the name of peace. (Yeah fuck for virginity why don't you too 🙄) Since when has fighting solved conflicts? No... that's talking, compromise and listening...realising everyone no matter what their colour, religion or beliefs are tainted by their past. We can only change that through mutual understanding.

Greed rules or the multi billionaires of this world could have stopped global poverty several times over. Don't you wonder who's making money from the vaccines, swabs and masks? How suddenly its fine to pollute the world en mass? Wars are only fought when something worth $$$ can be won. Cancer has more cures than the 'cut, burn or poison' that are the only things legally allowed to be mentioned. Did you know that people have been locked up for curing it? Yes, for curing cancer in people who were  deemed terminal by the NHS and are alive and well... but they were locked up purely as they didn't follow the law ...

Legality is not morality. Never has been.

This world is run by evil, many who admit they are eugenicists. I won't even mention some of the other things I believe happen, but I trust 'truth will out eventually' and just watch several films that are more reality based than you possibly ever realise... 

(and yes this conspiracy theorist has been right many times this year 😉 - although I've never wished more that I'd been wrong 😔)

They even admit they have a government fear unit, designed to keep you in enough fear to comply. Think - why on earth they would want a population in fear, if it wasnt to keep them under control...?

 

Same reason we have schools... (you know you can home educate and you don't have to 'teach' your child 'the curriculum'?) Schools just teach you to follow the damn rules and you are not a priority, to follow the system until you die. Do you own thing and you are ignored or punished, where even amazing talent doesn't matter if its not on the syllabus. It's certainly not encouraged. Is that what you want for your child?

 
But...Yes you are a priority!!! A sovereign human that doesn't have to mould to the rules.

 

You are a soul who deserves much more than this,

 just as we all do.

I don't wish you a Happy New Year... I wish you some fucking balls to say no. 

To start looking and questioning. 

To listen to your own gut, your inner knowing, and your heart. 

To think what effect your actions have on the world and if you are part of humanity staying enslaved? 

Please start to listen with an open heart ❤ I don't hate you for complying,  I just want you to know you no longer have to if it doesn't feel right TO YOU 💫 (and if it does, and you enjoy having your life controlled, I wish you well x)

With that we ALL can have a 'Happy New Life' without the evil, greedy, rich, 'philanthropic', twats who own most of the world controlling us.

We can all have peace and a happier life then.
I pray for it anyway... for you and your children 🙏💖💫💖🙏

Love you 😘 from Enzo and I on the sofa x 

How do I explain...

© Jo Barlow 2020

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Masks & Hidden Disability

Masks scare me, yet it seems many in shops are wearing them, some even when walking outside or driving alone in their car... 🙄 

It annoys me for many a reason as I have explained here. 

But it also stresses me massively. I have barely been to the shops since Corona started (and almost every time was a disaster) and not at all until today since masks are supposed to be worn in shops.

I had decided to get a Hidden Disability card several weeks back, after one of my shopping trips that ended in tears. Realising they also had exemption cards to masks, I got one of those as well while there. Once the masks guidelines came into force I was glad I had it, but didn't want to go out and get abuse from people or shop staff as I have seen has happened to others, so I still hadn't gone anywhere... 

I cannot explain when I'm stressed at the best of times and it invariably ends in what looks like me having a good angry swear up, when in fact I am just unable to cope and my brain seems to have forgotten how to say anything other than swearing. 😬😓

Today I wanted to get a card - my son and his girlfriend got engaged 💕 - and I had been stressing as to where to go that would be most likely to accept I am not wearing a mask. I felt so awful that I decided to wait until my husband got home and go with him as I couldn't do it alone... 

Then in the middle of trying to make pancakes for breakfast, my youngest son discovered we'd run out of milk. I was the only person here who could drive and I realised I am going to have to go to the shop... and now!

As I got in the car, I was trying to work out what was stressing me. I know I am exempt from wearing them for many reasons (severe distress being the main one - I cannot even cover my mouth and nose at the same time with a blanket, but I knew it was triggering some kind of PTSD from my brain surgery too 🤔) and while I know my ability to speak easily shuts down when I am stressed I knew all I needed to say is 'I am exempt' and if I needed show my exemption card, and legally they cannot do anything ... so what else was it that was stressing me? (rather than just making me angry as I don't agree with them at all)

Then suddenly I just had a feeling that I wasn't driving the car to the shop, but walking down the corridor in hospital to theatre. To be met by doctors and nurses IN MASKS. Not knowing what would happen next ...😨😰

I still managed to drive to the shop OK, even though my body was pounding loudly, and managed to walk in and even choose a card whilst still being able to think. (I know when I have hit this limit and it feels my 'brain has overloaded' and I need to rest while it reboots!) Thankfully I went to the local shop where my husband has spoken to the owner about not wearing masks and he didn't say a word about it and even called me 'my dear' or something else deemed polite. 

I was still shaking though, and I couldn't look at him as he had a more surgical looking mask on. I cannot look at them without fear... and now I understood why.

I drove home with milk and a card. 😊 Sat down for a minute then decided I needed to take the dog for a walk to burn off the excess adrenaline. I then went in the gym and although was particularly useless (as stressed) it felt I had calmed my nervous system down a bit. 

After, I then sat on my normal tree seat at the park and wondered...

 

Will this whole farce of masks would actually help people with hidden disabilities be seen in future? 

 

Has it forced those of us with anxiety or PTSD to let others know? 

 

Will people realise that someone can have a hidden health issue while looking healthy and 'normal' on the outside? 

 

 Maybe, just maybe, people will try and understand? 

 

 

I don't want to wear a badge round my neck labeling me like a lesser classed citizen - I reminds me of the Yellow Badge labeling Jews (I hate the lanyards schools, offices etc wear too!) but I am happy to have the lanyard on my bag or show it when I need to as a compromise. Or have my wrist band on as its more discreet.

You can also download or print a (rather hidden!) exemption card on the government website here.

And just in case you haven't been told - these are the legal exemptions for most Hidden Disabilities... 

 

 

 

 

 

 

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A Very Quiet Birthday

Two days ago it was my birthday 🎂 I ended up spending it at home with my family. No surprise there being that the country is on lock-down! 😁

On the surface there was no presents (as no one could get to the shops), no meal out and I couldn't even get a takeaway of food I wanted.

Last Saturday evening also should have been having a birthday gig with my husband and son's band. It is the singer's birthday the day before mine so last year it was a fun event. Nothing pressured, just an enjoyable evening. But this year everything is on stop...

So instead I got a nice home cooked meal and my son making me a really tasty gluten free birthday cake. (Believe me tasty gluten free cake is a task in itself!) Nothing else different from any other day.

Apart from their presence in the present -

which I guess is the best type!! 💜

But then I never much liked my birthday, I hate people fussing over me as they are 'supposed to' rather than they 'want to' (Just to let you know - any other day of the year and I am up for treats!) and I am not the artificial huggy, kissy type. If you get a hug it's as I mean it, and care. We even chose to get married abroad as I didn't want a wedding what feels to me a fake, and expensive, parade.😬 So I guess 'nothing' doesn't upset me too much?! Not much different to lock down being quite like our normal daily lifestyle...

But I did get a birthday spent outside in the garden, with blue sky and no 'plane lines' (even if it wasn't as sunny as the day before.) The loudest noise for most of the day the birds nesting in the bird box in my garden, rather than the constant volume of traffic driving past, the constant line of planes in the sky or the rumble of a transporter dropping off cars to the garage nearby, or people revving engines. I spent much of the day planting seeds and sorting pots for growing veggies in what felt a far better environment than usual.

Plus, as it has rained in the night, when we went for a walk that morning the trees outside had dropped their white pollen, so it was like I had a layer of natures confetti at my doorstep, all down the road and at the park instead. Nature celebrated quietly with me.💜

And... for some reason, I still find the date of my brain surgery, my cranioversary, more of a celebration of still living than my birthday. Maybe as not many have a cranioversary day, or a second chance at life, it's a bit more special?







.

Life Lessons from a Dog Walk

This weekend has been stormy and raining heavily, so when I took our dog to the park today there were puddles everywhere.

Enzo was loving it, and kept running around each small puddle and dropping his ball into the water. Laying down next to it and watching. Then after a few seconds he picks it back up again and drops it back in the water.

I know from past experience at the sea or river that he often drops his ball and waits for the waves to take it away and wash it back to him, or the river to start to carry it downstream. He catches the ball again as it moves about a foot or so away.

So I believe he is waiting for this to happen and expects his ball to start to float away when he drops it into a puddle.

He is watching it in exactly the same way, picking it up and dropping it over and over, just it never moves.

His collie intelligence tells him water = the ball being washed away, yet if doesn't tell him that puddles are different to the sea, rivers or streams. 🤔

It's mistaken logic. Our belief shaping our reality. 

How many times do we do the same?

Clearly not with a ball in a puddle, but with life. How we think reality should be. How we have been shown or experienced something once before so we think that's still real now. And so we repeat something over and over as it 'should' make sense or react in this way.

How often do continue thinking the ball will float, when if we just sat in reality and watched it, we will soon realise the ball doesn't float when the water isn't moving. Or it only moves in certain locations.


Instead we just focus on how we think it should be...

even if reality is not following expectation.

🤔

Even a simple experience such as walking the dog in the rain can be such a variety of experiences depending on our mood and thoughts.

Some days it's as much as I can do to drag myself round the park, I don't want to talk to anyone, have any other dogs near us to take his ball and anger me when I can't get it back. Other days I will laugh at the exact same experience of a dog stealing his ball and teasing him with it, trying to get him to play.

Some days I cry walking round there, feeling extremely sad, angry or anxious,

There are times I love the rain. Just Crying in the Rain & Releasing.

Other days it just feels like the rain will never stop. it's making me uncomfortable and wet. Longing for the sun. 

 Yet others I feel nothing but love and joy. The rain a blessing.

I've learnt to accept all the feelings, none are wrong or bad, they just are. 

Temporary.

Often if I just accept that moment and the tears or frustration with it, a lap of the park and a sit on my favourite tree branch helps me release my feelings and refocus. (See my previous blog post here)

Soaking in the knowledge I have felt much worse and things have got better again, have felt amazing joy, then struggled again after... yet the tree is still here.

Still grounded, knowing it will shoot leaves again soon and feel sun on its branches.

Not expecting anything else other than what is ...






.

Trauma, Anxiety & How Thoughts Can Change the Experience

It was only on reading something written by another person expressing their thoughts of when they were awaiting brain surgery that day and how their anxiety and heart rate went up, that I fully realised ... it wasn't just me.

I hadn't been weak, was just an anxious person, had a phobia, or was getting stressed for nothing... But was reacting in a way that others do, probably even the majority of people do, to a serious surgery where no one actually knows the outcome until after you wake. I was scared, terrified and my body was reacting as such.

Yet why don't we discuss this? 

Or the thousands of other events where you feel you will be judged if you actually dare be honest? 

Told to 'pull yourself together', 'man up', 'move on', 'be brave' or 'take a chill pill'.

Rather than someone just say... 

"Don't worry about feeling scared, 

it's perfectly normal considering the circumstances, 

I'll be here for you"
and to reassure you all is OK.

The nurse that held my hand in theatre until I was unconscious being one of these living angels. 💜

↔

Is it any different to going to the doctor and them diagnosing you with depression or anxiety ...but not taking into account that you have just had a upsetting or traumatic experience recently?

One that you need to discuss and process before you can move on rather than just bottle up and ignore.

The thoughts in your head won't go away , no matter how many pills you take, bottles you drink or things you try to distract yourself with...

Yet society shames us for struggling.
 Admitting our truth. 

So we frequently don't mention we have anxiety, feel low, or are stuck in a hole not seeing the way out. Until it gets too much and we go to the doctor's to get 'diagnosed'. With a mental health 'problem'. Told that the body doesn't have the correct balance of chemicals, or some other psychological theory that's not actually proven in science (but believed by many). (see my previous post about Johann Hari's work)

Yet is it really a problem or just a way of reacting or adapting to life? 

 

 

 ↔

 

 

If someone experiences a traumatic shock, we often need to tell others what happened. Express it in our own minds, make sense of it. Write it down. Draw an image if it, or just an abstract of the colours and words in your thoughts.

Animals often physically shake after a near miss by a predator, so why don't we cry, scream, shake or do what's needed? We do other people suppress us? 

When my then boyfriend drowned when I was 17, I was given tranquilisers that night by the GP, blocking my anguish and shock. Society expecting me to be 'over it' by the funeral, after all "I was only young - I'd find someone else"... 

With no one to explain the 'hell in my mind' to.

↔

I have since learnt and realise the body is programmed to be alert for future signs of something similar to protect us. Just as it would have done with early man. So if someone was wearing a red dress or there was the smell of freshly cut grass nearby when the trauma happened, both if these seemingly totally unconnected images will possibly remind your subconscious of the trauma, and give you future signs to avoid it. 

For years I hated birthdays, not knowing why. It was only when realising and fully expressing I was at a child's birthday party the day he drowned that this anxiety went. 😢

It can therefore take this understanding that when anxiety hits, 'What was near me just before it started, what it is reminding  me of?' to help release it. Rather than thinking 'I have anxiety now. I need to get away...'

↔

I had this situation last weekend. I was at a pub watching my husband and son's band play a gig and had climbed the stairs to the toilets. These same stairs that I had not climbed for a few years.  The stairs where before I knew I had a brain tumour I could barely walk up as they made me feel so dizzy and wobbly. Knowing something was drastically wrong, yet I was told by doctors it was all in my head. When I felt drunk, but was 100% sober, and so scared.

Instantly this fear came back, but because I knew I had linked these stairs with the anxiety of knowing I had something wrong. I could almost immediately be thankful the trauma was over. I can now climb them OK. Being thankful I was alive. Know that these stairs were part of my trauma, and that could now be released. 

I also can now think 'Oh that's made me a little anxious' and just accepting the fact I am feeling anxious seems to reduce the anxiety!

Where as if I start to panic, 'Oh I'm feeling anxious, I don't like this, what if someone realises... what if, what if, what if'... It just gets worse! 

↔

I again had a really good experience of this a few weeks ago. I was driving my car home alone (I had gone with my husband to collect another car, which he was also driving home) and as I didn't know the area, I was following the sat nav. Initially to the local services. It was narrow winding roads which I didn't like and as I was doing a mixture of looking at the sat nav and checking his car was behind, it made me feel a little wobbly and off balance. (I still can't easily turn back and forth without it affecting my balance) 

So after 40 minutes of driving I got to the services, already feeling a bit stressed and knowing I still had another hour or so to go. (Far longer than my usual driving, and I've certainly not done this distance alone since my surgery.) I told Dave I'd follow him now, as we both knew the way and wouldn't have to look back to check he was OK.

Yet as we got on the motorway, it completely tipped it down with rain. Like the heavens opened type of rain. I could barely see his car driving in front of me. The splash-back of a lorry passing meant I was all but temporarily blind, even with the wipers on fast! I felt anxiety rise, 'I'm on a motorway, they don't even have hard shoulders any more, not that I want to pull over in these conditions anyway as I wouldn't want to get out. I have to continue, as stressful as that may be.'

But I also knew that these driving conditions would be stressful to many people. I am an OK, safe, driver. I just need to relax and be sensible.

So I turned my music up louder and started singing along. Something I knew would relax me. After all no one could hear me with this belting rain! 😂

I also asked the universe to protect me, just like it has many times before, and trusted I could manage.


I'd dealt with far worse ... 

We both got home fine, about 2 hours later than planned due to the weather, but we were home safely. 🙏🏻 

I'd driven for 4 hours, minus a short break for some food, and been in a car for 6! Far more than I 'thought' I could drive for, but I'd never really had time to think how long it was until I got home.

So I didn't have chance to judge myself and that it was 'too much' for me. 🤔

↔

I guess talking to others helps clarify some situations and experiences in my mind, seeking what others feel and realising that it's 'normal'.

But questioning myself and my beliefs on others is even more available and often just as helpful.

Not judging myself negatively.

Yes I may have anxiety at times, who wouldn't with trauma in their past,  but I'm not a failure because of it. 

I'm getting over trauma and anxiety is part of that. 

Please help normalise it, and don't judge. 💜

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How Others Stories Heal

Over the Christmas holidays I read a few things that really made me appreciate how others who have been in the same place you are, or were, are possibly the only people who really understand your experience.

How they can often explain in a way that you have not yet been able to voice, or even consciously accept - much less release.

Their words just holding your soul.

Both of these posts were the turning point on my decision to continue writing this blog again... (after being told I was prolonging acceptance in doing so!)

So two posts I want to share with you, - with the writers full permission. 

One was on helping someone else struggling with anxiety, after their brain tumour, and the daily struggle that ensues. Something that the 'pull yourself together' or 'just take a drug' brigade don't understand, in fact I don't think many can understand unless they have either been there themselves or watched a loved one struggle.

"I used to have really severe social anxiety to the point I didn't leave the house. I made a list of the things that scared me and then starting with the most easy I would try one by one. Going the shop was scary as I'd have a panic attacks and I would cry and have to ask my Mum to use my card and pay for me, or getting the bus would make me cry and run away. But the fact I was still trying it, made me take it as a win. 

Then over the years everything got that bit easier and easier. It has taken about 6 years for me to finally be 'normal' again but it is do-able 😊. As for the seizures I found mine was triggered by stress. But I also learnt that while having a seizure my heart rate with shoot up soooo fast, so I would learn how to try keep calm and breath and as my heart rate came down the seizure would be less severe and would end quicker. Obviously you will have times you just can't do this but it's definitely something to keep in mind 😊

Also with the depression I've learnt either writing down how I feel or speaking to a counselor or just someone who you don't really know is a massive help just being able to offload. I still have my days with my personality disorder, but it's okay to have bad days where you just sit and cry and sleep. It's picking yourself back up again what is important." - Beth Parker

How explaining and others listening, supporting, guiding with kindness and love really can help, but that often we just have to love ourselves more too. Not judge our bad days, or think that we are weak, stupid or wrong. Treat ourselves as kindly as we would a good friend.

One of the hardest feelings in the world is feeling alone -

 even when you are in a room full of people 😔

⬌⬌⬌⬌

The other post was of someone who had just returned home after his (elective) surgery to remove his cerebellar Hemangioblastoma (which was thankfully caught early and still quite small - before too many symptoms appeared) and had been seeking advice on my support group.

"First memory was coming too and in recovery. Lots of simple questions: Do you know who you are, where you are, what day it is, etc. So happy I did and felt my brain working but I had no voice as hard I tried. They said it was the anesthesia still in me. Finally could whisper and use hand signals. Dr. Patel came in and said I did great and it only took 3 hours. CT looks like everything is out. It most definitely was a Hemangioblastoma and profiles benign. Couldn’t sleep all night but relieved and did simple moves and stretches in bed. Good to be alive and recovery is going great. So appreciate the small things and focused on not overdoing it. I realize everyone is in different spots with this challenge. I appreciate you all and draw from your stories and strength!

Speech is great. A little sticky for first 48 hours and my mind was actually going faster than my ability to get words out. I think it was the drugs but I could not help cracking jokes to almost everyone. Also my sense of relief that my brain was in tact. Tired so fast though and my flashes of energy quickly overcome by fatigue.

I didn’t realize how much stress and dread I was carrying until I finally was brought back and knew my brain was working. It was looking at a clock in recovery and figuring out how long I’d been out, then moving my feet, feeling my brain waves fire up to know simple questions even though I couldn’t get my voice out for a few. It’s quite a surrender, courage and act of trust/faith to do this. I know I had a choice of delay and so far feel blessed by my decision and your support. Thanks Jo and all!" - Brian Gilmore

I just cried when I read this, yes some were tears of recollecting almost the exact same thoughts:

'Did my brain still work? Could I move my body? 

Did it all go OK during surgery and was the tumour all out?'

So yes neuropsychologist woman, you are right it 'brings it back'...



... but what it also brings back is a memory of the sense of gratitude, relief, strength and that overwhelming knowledge I'd survived, the belief that even a few deficits would be an acceptable trade for being alive. The reminder that small things we worry about daily, just don't really matter in the scheme of things. Where I could see the beauty in even run down old buildings as I went home... 

https://www.facebook.com/BrownnCares/

The 'surrender, courage and act of trust/faith to do this' and how those emotions and feelings never truly leave you. How they give you strength forever.

Plus some added acceptance, understanding and knowing of just how far I have come since then. The knowing that others have faced the same, will continue to face the same and being part of a tribe that understands you.

Tinged with a huge happiness that the support I (and others) had given, the words I had written, had impacted someone else's life for the better. Made a really tough time for them just that little bit easier in having the support I never had. 

So yes. 
No one does really understands it unless they have been though it themselves. 

💜

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