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/

 

 

 

 

Even shopping is tough.

I've had to go to the shops in Kingston twice this week. I hate it. The appointment today was for the optician, to change my glasses. I had taken over a month (since returning from our holiday) to feel able to phone them to book an appointment, even though my glasses were literally hurting my nose and several times I just wanted to throw the bloody things across the room! But I felt my brain was just too muddled for a phone call... I couldn't work out what that first sentence would be without confusing them or them having to ask me to 'say it again please'. (And yes this has happened many a time!)

But I'd been forced to make a phone call after I took my son shopping (only going to one shop, getting out of there ASAP) as we both needed new shoes. But at the till my mind went blank and I totally forgot the PIN, even on a couple of attempts. When the cashier said I had one last try, instead of trying again I decided to get my son to pay for one pair of shoes so I could just use my card contactless to pay for the others. But afterwards I was in a complete tizzy, my brain buzzing... I somehow managed to walk at lightning speed back to the car, weaving around people in a freakish manner. It was like slow motion where I just aimed for the gaps in the crowd, and somehow my coordination played ball! - I think from the adrenaline. My son telling me to slow down as he couldn't walk that fast behind me with a big bag of shoeboxes!😁

I got home and rationalized if I went on my internet banking I could try and enter the PIN to work the number out while I logged into the card reader (as I've done weekly since I got it with no previous issues.) But I again typed in the wrong PIN and it blocked my card... Hence the phone call (The PIN is still a blank... I've had to ask the bank for the number to be resent to me!) 

Anyway, after that phone call (which I had to call twice and get my husband to listen to which was the correct number to press as none of the categories were for 'I've forgotten my PIN' 🙄) I thought I *really* need to make this phone call to the opticians too.. so called and booked an appointment for Sunday. (I just said I needed to book to get my glasses looked at as they hurt me! - I didn't actually need to explain the confusion I'd had with emails etc)

So today...  I was tired and my brain felt full before we even went anywhere. I was also feeling agitated as I'd spent a fair bit of money on my glasses and didn't want to just be fobbed off. Plus I also had to return a pair of the shoes as the sole was awful - slippery and felt like polystyrene. (And no, I didn't know why my son didn't realise that in the shop?!) 

Dave drove and we managed to get to Kingston and into the car park fine, down a lift and to sports direct reasonably ok. (Although why a few plants in a large wooden planter in the middle of a concrete jungle had 'green spaces' on them was a little too much woke bullshit for my liking! 😁)

Dave couldn't see a pair of shoes he wanted either so we stood in the queue at the till, only to realise when I started looking around that there was a sign above us saying 'refunds upstairs' which we hadn't seen as had entered the queue from the side of the shop. 

Really helpful! 

 

So after waiting a few minutes for it to arrive, we get in the lift to see the shop has 3 floors, no label on the buttons as to which of the other floors is the refund area. 🙄 So Dave said "go to the top floor and make our way down" as it's easier walking down the stairs than up.

Level 3 was only a small area, with boxes piled outside the lift and in the walkways. Not only completely disability unfriendly, but actually dangerous. Not even a staff member in sight to move them. 

So down one flight of stairs, I have to super hold on the rails when the stairs turn corners, have odd lighting coming through them or stripes or patterns on the flooring, otherwise it sends my balance off. Plus, if I can't easily distinguish the step edge, I have to really take it slowly.

But on floor 2 we could vaguely see a till area so went to the other end of the shop... Yes, refunds! Although we instead got a credit voucher as they don't do actual refunds. Even the guy on the till agreed it's silly they say 'refunds upstairs' but not stating on which floor level.

Just going in this one shop and when crossing the road outside I am already feeling I need to double check for traffic as I'm feeling a bit unbalanced, ungrounded and might have missed something. 

So off to the opticians... But today my coordination wasn't playing ball and it was much tougher to try and avoid people walking the other way, or the cyclists that think it's fine to still cycle at speed on what (I assume?) was a cycle area too. (Although there were no visible signs that it was a shared cycle path - and the whole area is all paved in a similar way. These shared pedestrian/cycle lanes I hate and would avoid if I could) Even seeing a cyclist coming towards me is unbalancing, and I have to all but stop still so I don't wobble in their way as they pass. The faster they are, the more I feel like I'm going to wobble into them as I can't react in time.

The opticians appointment was fine, she heated the glasses to mold them slightly differently, so I hope they will no longer hurt my nose.🙏

She suggested we could wander round Kingston a bit and come back later if I felt they were still not right... But I replied "No, I need to go home". That was enough.

We walked back to the car park to find that the lift in the entrance we had used no longer has a ticket machine to pay, so we walked to another set of stairs, to find the ticket machine had gone from there too! To go to the third area and find they now only accept card payments, not cash, and 1 hour's parking costs £2! (No wonder people don't shop in stores anymore.)

The one flight of stairs to the next car level has a raised area on the floor at the top, I managed to hit it with my toes rather than trip up it, then the water laying on the car park floor was reflecting badly in the lighting above and rippling and flashing in my eyes as I was walking. I have to look the other way to stop it throwing me off balance. Again when going down the circular ramp of the exit I need to look down as my brain is not able to process the movement and speed of the car correctly.

If I was tired when I left home, I was certainly tired when I came home. I opened a packet of biscuits to have with a drink, put one on the side while I put the biscuit tin away, then promptly knocked it into the dogs (raw) food bowl.

That sort of sums my day up!

I'm exhausted and it's not yet lunch time. 

 

 

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 💖✨

I thought...

I thought I was angry, a stroppy red head,
But I'd had so much trauma, I often wished I was dead.
No-one seemed to notice, no one seemed to care,
They couldn't see past the surface on what really was there.

I'd been scarred as a toddler, scared as a kid,
Abused as a teen, not fully realising what he did.
I thought it was normal, thought it was fine,
Didn't know that my childhood really wasn't mine.

I thought I was grown up, I thought I was cool,
But all along I was played like a fool.
Yet everything was hushed up, "Don't mention it again",
Until in the end my soul was crying with pain.

So the anger exploded, the fears came to light,
But I was just judged, "She really isn't right".
Of course I wasn't, these traumas lay inside,
Haunting me daily, opening my fears extra wide.

I thought I could tell them, let my truth start to be seen,
But no one wanted to hear that perfect they'd not been,
"Forget about it all, just focus on your now",
Although my mind didn't seem to understand how.

And still no one listened, still no one cared,
"Just don't be so sensitive, be glad you were spared".
But, how can you be normal when you're dying inside?
Too scared to live, just wanting to hide.

I thought I was crazy, I kept reliving the pain,
I must have been guilty, felt I was insane,
Never once mentioned by those that had known,
Memories haunting me, I felt so alone.
I didn't want to be me, yet to scared to tell,
That every day I felt I was living in hell.

So I blocked up the pain, pushed it all down,
Until one day it burst and I felt like I'd drown.

I thought I'd address it, I thought I'd be brave
But it also felt like I was digging my grave.
I wasn't the bad one, it wasn't my fault,
But my life as I knew it, had come to a halt.

So the pain just erupted, there for all to see,

Finally, someone was listening to me!
Releasing the trauma, releasing the fears,
Connecting the dots, and a lifetime of tears.

I thought the old me is going, a new life begun,
I often wish it'd been sooner, so it could all be redone.
To look back with fondness, rather than wish it away,
To love every moment, to live for the day.

I realised I was powerful, realised I was true,
Happy with what I have, appreciating what I knew.
Finally knowing what it means to be free,
And for the first time ever, I finally could be me!

I thought I had got there, thought I finally knew Jo,
I wish she would stay though, the negative of me go.

Yet the darkness keeps returning, I have to again turn on the light,

Once again I'm trying, as I want to look back knowing I did alright.
Know that I healed my soul, that I healed my pain,
And never, ever would it happen again.
But for now I keep trying, knowing my goal,
That every part of me finally feels that I'm whole. 

 

.

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 

..

Vagus Nerve Healing

I always look out for synchronicity and serendipitous occurrences since my surgery, as I have had some really helpful and powerful messages when I have been paying attention.

Several months ago on my brain tumour group someone posted about having vagus nerve healing which although interesting, I partly ignored as I couldn't afford to look for treatments. Then I saw article after article pop up on the vagus nerve, and even in regard to anxiety. So I searched it, finding that you could do healing exercises. The one I liked best was by Sukie Baxter - Whole Body Revolution - who has a You Tube Channel  as just listening to her voice was soothing. But doing the simple exercise (here) of literally looking out the sides of my eyes for a minute each side made me feel insanely dizzy after, and the wobbly feeling didn't just for a few minutes, but for the rest of the day.

Yet I felt that as something so simple could have such a dramatic effect, it must be something my body needed. After a few conversations on you tube with Sukie I tried it again, but not looking as far to the side, nor holding it for as long. Again I found it hard to look round to the second side, and realised it didn't matter which side did first, the first side was OK but the second I could feel myself and my vision going in circles trying to focus. So again I had to keep looking a bit further forwards (I reduced it to just over 45° each way), only held it for 15- 20 seconds and also only did the exercise at night so I could go to sleep afterwards without having to walk or feel wobbly.

Over a few weeks I gradually increased it so that I could get to around 70°, although the first side was always better by about 10° than the second side! Plus I also increased the time to 30, then 40 seconds.

Then at some point on doing another of the vagus nerve exercises for anxiety I realised it had calmed me, and so decided to buy the book she recommended to see what else it could help with. Accessing the Healing Power of the Vagus Nerve

On receiving this book I was totally fascinated with the topic, almost every word I could relate to, from the common problems related to cranial nerve dysfunction and the states of the automatic nervous system almost summing up my health, to how the Polyvagal Theory could mean that my body, not my faulty thoughts, was causing many of my emotional struggles.

I sat and cried when it explained that I could be 'stuck' in fight or flight mode and this could be the cause of my now almost constant anxiety, or blank depression. I know that when I still had my tumour, I was experiencing fight or flight fear responses many many times a day when my brain wasn't able to cope with moving around and it throwing me off balance. The sick to your stomach panic hitting me each time. I had explained this to my neurosurgeon, GP, the neurophysiologist, and anyone who has ever supported me since my surgery... No one ever said this trauma might have been 'trapped' in my body. 

Despite this urge to read more, I was only able to read a chapter at the most each day, before I either couldn't take it in and absorb the info (and I know I needed to) or my eyes would physically struggle to see anymore without them blurring. And this was with my reading glasses, or my varifocals on. (or after taking them off, as sometimes this is actually better?!)

It was also informative that my wasted neck muscle could be part of my health issues as people with a dysfunction in the neck muscles are often not 'socially engaged'. (What you should be if the vagus nerve is functioning well)

Anyway, I was keeping up the basic exercise and gradually I realised I was having a few days at a time of feeling less anxious. I also had the urge to 'help myself' a bit more rather than feeling 'empty and blank' and brought some Palo Santo essential oil (which I absolutely love the smell of, and realised it is also for anxiety, depression, and stress - which might have been why it was calling me!) and booked an appointment with the chiropractor. (who I had not seen for months due to lockdown)

At this chiropractic appointment, she did a fair bit of work on my head and neck and I could feel how badly my body had been twisted to one side again, as well as wanting to cry when she gently manipulated my head and neck - I told her 'I still feel trauma is trapped here'. Plus she told me it was my trapezious muscle in my neck that was wasted. (which then explained a lot to me) 

The next morning, I woke to the top of my head feeling so sore, not only the usual sore spot but a bigger area in the middle of my numb patch. It is an odd feeling to describe, but a mix of someone pulling your hair out and sunburn. It felt like the nerves were slowly returning and (as I have found) the pain was one of the first signs of change.

Despite this I had the urge to do things and spent a few days in the garden, planting seeds, getting pots moved and then tidying up various bits in the house.

And... After a few days I suddenly realised I had not felt more than mildly anxious, was much less depressed and my health felt generally better!

Roll on a few months and another couple of chiropractic appointments and it felt like nothing more had changed. I was expecting things to continue as I was still doing the Vagus Nerve Exercises, but the anxiety and blank depression had not reduced further. 

Then, as coincidence has it, in September 2021 my husband had a customer here that happened to be, amongst other holistic healing modalities, a massage therapist. So I decided to try if this would help my neck.

After my second appointment, I had a rather interesting (and what also seemed rather depressing) observation on the fight or flight reflex .... He had released one of my neck muscles and then asked me something about after my surgery (I think on purpose) and as I spoke about it he said he could feel my muscle instantly tense right back up and go back to the same level of tension it was before he started.😲

So even thinking about the trauma of hospital and my surgery, despite not even talking about one of the times that was really tough or emotional, my body still physically reacted. I mean I know my fight or flight has never really gone down, but for it to be this clear was rather depressing, and it felt almost pointless me getting getting any treatment such as a massage to help if it just instantly goes back.

 

But a couple of times during the treatment I had just cried for what seemed like no apparent reason. I hadn't been thinking of anything that would make me cry, yet tears were just running down my face.  So I accepted these tears needed to be released and just sat there allowing them.

 

However to my surprise, after a couple of weeks and not really doing anything else too different to what I had been for a while, I suddenly realised my stress and anxiety levels had reduced considerably!  

Now, me being me, with the memory of a fish at times, after a few weeks I forgot to keep up the Vagus Nerve Exercises, I simply didn't remember to do them more than occasionally before I went to sleep.... but the anxiety, although not gone, had very much reduced. 

 As ever, it's a work in progress. Brain injuries and trauma take their time to improve! 😁

 

Accessing the Healing Power of the Vagus Nerve: Self-Help Exercises for Anxiety, Depression, Trauma, and Autism
Stanley Rosenberg

 
"Accessing the Healing Power of the Vagus Nerve is a practical guide to understanding the cranial nerves as the key to our psychological and physical wellbeing. Drawing from the polyvagal theory of Stephen Porges--one of the biggest new developments in human neurobiology--Rosenberg explains in easy-to-understand terms how the vagus nerve, in particular, has a strong role in determining our psychological and emotional state, especially when it comes to how we relate and react to other people. By understanding the physiology of the autonomic nervous system and practicing simple exercises to restore proper vagal functioning, we can learn how to improve our emotional state within minutes. Those suffering from anxiety, depression, panic, and trauma will find much that is useful here, as well as those with physical ailments such as chronic pain and digestive problems. Additionally, because the vagus nerve is a key regulator of social interaction, therapy for proper vagal functioning has great potential for helping those with autism spectrum disorders."

Brain Fog, Fatigue and Frustration

When I was in my 20s, the only time I felt exhausted after doing basic daily chores was if I was ill with flu or similar, or struggling with depression that took all my energy out of me. And as that included looking after 3 children under 6 at one point, one at school, one at nursery and a baby - it was pretty damn tiring. But I was back at the supermarket when baby no 3 was just days old with the other 2 in tow. I just kept going and got on with it.

In 2008, while in my early 30s, I got diagnosed with Chronic Fatigue Syndrome. I don't know if it was the added stress of a 4th pregnancy and child, trying to look after 4 kids who were always at different schools whilst I had no car during the day- which involved a timetable and a lot of walking, or the fact my anxiety and depression had never been addressed and my childhood and teenage traumas were catching up with me? Whatever the cause, I was often needing a rest, although I still did early mornings for schools, football early at weekends and all the shopping, meals, housework etc as well as helping Dave with our part time work from home business. 

 

By my late 30s I was struggling more, Dave was by then working from home most of the time and so cooked some of our dinners, but as various health issues appeared, I often felt run down or with a sore throat etc. So, I conserved my energy in only doing one tiring thing a day, changed my diet, took some homeopathy and supplements and I felt things slowly started improving.

 

For a while at least! Until in 2015 I just couldn't cope and wasn't able to do any extra work for Dave.  Even sitting on the PC doing simple data entry made me tired and stressed. He told me to stop and rest myself. 2016 was when I found out about the Hemangioblastoma in my cerebellum. 

 

Especially as the neurosurgeon thought my tumour had been there for years, 

if not decades, it might have explained a lot... 🤔

 

Those first few months after surgery were interesting... I was tired after walking to the garden at one point. Had to make sure I got everything I needed before I climbed the stairs. I still remember feeling happy I finally could walk my dog in the park alone after 3 months! In total, it's a 15 minute walk.

I have mentioned the fatigue a few times in the immediate years after, as well as the reality and understanding of what neurofatigue or brain fog actually meant to me here.

 

Roll on 6 years after I first really noticed I had something major going on with my body (I first saw the Dr's in January 2016, it took until April for a diagnosis) And yes, the fatigue is better and not as frequent, but it certainly hasn't gone either

I have managed to do things such as spend a couple of days landscaping the garden, or moving flowerpots and items around while re-potting plants, painting the lounge walls and redecorating for a week. However, each time I do something more major by the time the second day is ending, I am too tired to even think about cooking, or almost eating at some points. I struggle to find even the simplest words for either someone to help me with something such as help move some shelves, or to explain a task such as the dishwasher needs to go on. I often end up all but crying from tiredness and the frustration of being so exhausted from just doing what many could do easily. I need to go to bed at 9pm and just can't move anywhere. Plus I am certainly tired after, often for several days.

Last week I had a head cold, then my husband a flu type illness these last few days, and although he's not asked me too do much, a mix of me still feeling snotty, him fidgeting at night and so I'm waking up, plus having to more chores as he can't do them, and I'm exhausted again. I've fallen asleep in the day several times, gone to bed in the day as I cant think, even more. 

 

I have had a few days where my head feels like it's made of cotton wool that's simultaneously being pulled tight around the outside. My scar area aching and even the feeling of 'the wooden plank' down my head and neck comes back. Unable to think what I want to say easily, then saying the wrong words when I do. My vision is awful and my reactions slow and dulled. 

 

To everyone else this is what you feel like when you've got flu, or been on the piss all weekend (or Christmas!) ...to me it's just when I'm tired. Yes I don't feel like this every day, but frequently enough to say I have fatigue.

 

Not after doing something extremely draining, not after a really big emotional event... just a small daily task or event that has been a bit tougher than average, often one where you think it shouldn't really cause an issue.

 

Actually, talking about events, it was our sons wedding in November. It all went brilliantly and I enjoyed the day, albeit I was wanting to sit down alone by 6pm as I felt so tired! I could feel I was starting to say things that were a bit weird and didn't want to explain to every last stranger:

"Oh hey, sorry I'm talking odd, I'm not drunk,

 I just had a brain tumour" 

 

Sometimes it's easier to just let them think I might have had a few! 😬

 

I had to leave a bit early at just before 11pm as I could feel it was fully getting too much. But the next day... I went out in the car about 10.30 to get some bread. I could barely think. My head felt like mush, it almost felt like my brain was vibrating from the fact it didn't want to be working yet. I felt a bit wobbly and totally not with it. My vision not working properly even with my glasses on. It was just awful, and all from emotional, rather than physical tiredness. I often think that is far worse.

 

 If my body is tired, a sleep helps. If my brain is tired, not much helps. 

 

I rested as much as I could that week, tried to get out in nature and all the things that help, but it still lasted about 10 days before I felt I didn't have brain fog and wanted to cry anymore.

One of the things that gets to me most is when others seem to think its a competition in who's the most tired. Like that's a competition I want to win!!😬 People who say they have insomnia often saying they are tired, but (often) can still get on with things. They can work, still do most things people take for granted. I can't seem to explain that when I'm tired, I need to go to bed and physically rest. I can sleep for 9 hours and still feel exhausted and unable to think.

 

I can't go out again without a rest, nor walk to the pub, or see a friend, or even do a hobby. I can't even paint if tired, I just spill or drop things everywhere and cannot judge distances or see enough to do what I want to do. I ruin the work I have previously done. I can just about write, as long as its the basics of what I am thinking at that point, something I can edit later when I have more brain power. But I still have to deal with the frustration of making writing legible or correcting each word when I type. If you see me cooking and all the objects going flying you would wonder how I don't hurt myself more often!

 

If I want to go out late in the evening I need to have at least a 45 minute sleep in the afternoon, although it often takes me another 45 minutes to fully wake up again after! Yet people see me that evening and say I look and seem well, not realising that going out was the only thing I could plan for that day. On the few occasions I have not been able to sleep beforehand, I either really struggle talking or coordinating myself that night, or am just far too tired to do anything or go out the next day. Once the neurofatigue has hit, I can't read a book or plan things, or do a task such as organising the food shopping, well not without doing much of it wrong.

 

Then there have been some times that I have been physically exhausted, such as after painting the house and I am tired, but feel fine the next day after a sleep. I think it's as I actually enjoy doing that, it doesn't overwhelm me and am not finding anything too emotionally tough. I do know its worse when there is too much visual and audio stimulation or I've been talking to people who I dont know well - those I dont feel I can talk to without judgement from. I can sometimes almost feel my brain going sideways inside me at this point. Its hard to predict, what conversations and events will be good for the soul or simply too much for my brain.

This winter, which has been tough in so many ways, I decided to take up doing a lot of crochet. I am on my second Granny Square blanket. 😊 Making a simple square at a time is not taxing and I don't have to remember a pattern or where I was. I simply make lots and sew them together after. As well as being a useful item, its also relaxing and therapeutic. Anyone want a blanket?! 😂 

 

 

Trauma busting...!

Yesterday I had an interesting day. After months of not wanting to go to a venue Dave plays at due to the owner thinking it had been OK to first ridicule me for drinking water, then several months later, to screen shot one of my posts then publicly ridicule me on social media for being a 'conspiracy idiot' (although I will point out, one issue since became true🙄) Which combined with a bit of trauma from once feeling so wobbly and falling off a stool there, being pushed as I accidentally wobbled into someone, as well as going there with hydrocephalus and on hearing the music feeling my brain would explode... I had not wanted to step foot in that place.

But today Dave was going to a gig there, and I knew he was knackered (after a manic week and 2 gigs already this weekend) so I wanted to go and support him...

Suddenly  I had the realisation 'What am I doing?' , I don't like bullies and I actively stand up against them (bullying is happening everywhere atm and not many are standing up to the abusive and controlling behaviour) so why the hell am just letting another bully get control over me?

So with that I decided to go...

And you know what. 

I conquered my trauma.

I felt in control.

People who know me were kind and supportive.

I had a laugh.

And...

 

The bully didn't say a word.

Those who had supported her couldn't even look me in the eye.

But I didn't even care. It doesn't matter if people hate me or like me. 

I'm me.

I have nothing to be ashamed about.

I'd done nothing wrong 

I am sovereign and true to myself.

And the people who care will always be there. 💖

Plus I can listen to my husband playing some amazing songs🥰   

 

 

 

 

A psychological war?

I've been rather silent recently, I honestly feel I have nothing positive to say, nothing cheerful or inspiring to write.

I am stuck indoors most of the day, unable to go out and meet anyone, the activities I used to go stopped long ago, even my own parents have banned me from visiting. My life as it was before March just forgotten about. Unable to go to a gig to unwind and relax for a while - only once they stopped did I fully realise how much they used to help me both physically and mentally by keeping me active and also healing me in so many ways. From enjoying the music, to talking to people, to having to coordinate my body and brain in setting up the PA and guitars while not falling over wires. It challenged and helped strengthen and rewire my brain!

Last summer was bad enough, I had my garden to relax and sunbathe in, as well as growing and cutting back plants which also helped me coordinate myself and watching nature to relax. But since the weather means I am unable to relax outside, I have spent days at a time indoors, often in tears. Just wondering how much longer we can go on with barely any income, stuck in a small house all day and night. Some days if my family are in the front room and it's too much or I want to do something quiet I end up spending much of the day sitting on my bed. 😔

Then a couple of weeks ago I had just finished my dog walk round the park (the highlight of my day now!) and was sitting on 'my tree' at the exit, when I suddenly had this feeling of my Nan and Gran (who decades ago both used to live off the same road as me) and the simultaneous thought that:

 "This is what WW3 feels like, we are at war".

 

Was it was the same feeling of dread and unknowing that they had felt at the start of WW2..? Powerless ... Fear ... Propaganda ... Dividing others into 'them' and 'us' ... Not giving us facts and stopping those with an alternative viewpoint ... Not knowing what would happen ... Not knowing what would happen to our loved ones... 

WW3 is here but this time it's a silent psychological war.

People are literally attacking you for not following what they believe in, be it the wearing of a mask, social distancing or a vaccine. People are being divided into 'them' and 'us' no matter what view you have. They are idiots for following orders, they are idiots for not...

It seems many people are too terrified to listen to even the most basic of 'alternative information' (eg anything not from the BBC, or the mainstream media and newspapers.) Not even able to comprehend there may be another side to the story different to what is being shouted every day and night from the 5 differently run mainstream media groups. (Yes all TV and media is run by 5 different people)

Yet many have not even read the information from the 1000s of doctors, scientists and researchers who say the PCR tests are useless, the deaths shouldn't be recorded as Covid if, for example, they die of terminal cancer but they are within 28 days of a 'positive (faulty) test, that this is not a 'traditional vaccine' but an 'experimental medical treatment'. (Some listed on a previous blog post)

All the vaccines are still in trial stage. (Look on their inserts) Vaccines normally have between 5 and 20 years of testing, so clearly they have not been tested long term.Yes, more people may have been working on them, but they cannot speed up safety trials and what happens after a year, or 5. They were not tested in people with other medical conditions, the young or the old. There is no data on fertility - women were made to be taking contraception before starting the trial. They do not have the normal medicine marketing authorisation, but a temporary authorisation. What happens if they trigger cancer, or an enhanced immune response after a few months? Most people are not knowing that rna vaccines have never got past animal experiments before as the animals either died upon exposure to the real virus, had serious auto immunity issues, or were made infertile as the rna attacked the placenta causing miscarriage.

The Astrazeneca one instead having chimpanzee virus, mixed with aborted fetus cells by genetic engineering. (see here for the government website details) Sorry, but have you ever heard that SV40 - which has caused millions of deaths from cancer - was believed to have been given to people via polio vaccines that used monkeys in the manufacturing process? Or HIV is thought to be started from similar use of primates with SIV in vaccine manufacture? See the SV40 cancer foundation, The Lancet, the National Geographic. 

This was mentioned in even mainstream articles late last year, but have now been 'fact checked' as false ..! So even when scientists have genuine concerns about the vaccine, the media is not allowed to let you know these concerns. Make out you are an idiot for not trusting them as a (paid) 'fact checker' has proved otherwise!! 😬 Its far easier to not get someone to actually research for themselves when they are told they are listening to 'fake news' and must be an anti vax, conspiracy theorist to even question it. So as most don't want to appear stupid or believe our government is not purely trying its best, don't even question.

Yet despite many of these concerns or details being on the actual vaccine insert, or written in medical articles (such as a reviewed Pub Med articles) written by scientists, you cannot tell people. Videos from Doctors concerned with the vaccine are removed from the internet - free speech has gone. (This is here at the moment)

Social media bans or removes even your 100% 'factual' comments (such as info on the vaccine insert), people ridicule you without even doing a single piece of research of their own. (Although strangely as I have been following these issues for years I, like many others, have actually predicted many of these conspiracy theories which have since become conspiracy fact, or potential fact... like saying they wanted to introduce 'mandatory' vaccines (although its not legally mandatory, people have been told they will lose their job if they don't comply) or vaccine passports, saying vitamin c can cure all sorts of viruses and infections, autism is triggered by vaccines, that they want to stop cash...)

I feel that I am unable to even warn people as they go off to 'battle the virus' with their vaccination and yet feel they are now just playing Russian Roulette with their life, they are in a medical trial without even getting paid, and one that if it goes wrong they cannot do anything about. 😔 (You can't detox if some of the concerned scientists are correct and your DNA is changed)

I am now hearing from friends that they know people in care homes (who have been unable to see their family for 10 months) dying shortly after they had the vaccine. Apparently care homes are having a huge increase in deaths. This plan, whatever it is, clearly isn't working for their benefit. 

We are fed fear 24/7. The death stats are daily. A new strain. A more deadly strain. You will die, or kill Granny, if you don't wear your mask, if you dare meet up with someone else, even someone who is well... as you may be a spreader! 

 

Fear and stress = lowered immunity.

 

Plus there is the nocebo effect that no one even mentions... 

If you believe you will get ill, or have a positive test then you could well get sick, feel worse or even die 

- purely from this belief. 

 

I heard about this a few years ago when I heard David Hamilton talk about the nocebo effect, some of which is written here. Web MD and Psychology Today also have good info. Yet when was the last time you heard a positive mainstream media, or government article on Covid? One telling you to take high dose Vitamin C at the start of any signs. That combined with Vitamin D and |Zinc you can build your immunity up to lessen your chances of even getting it. Telling you to do things to reduce your fear and stress?

It's been a farce over the last 10 months or so, the government constantly changing its 'rules'. The outright lies. The twisted stats. The controlling. Making out you are a Granny killer if you don't do as you are told. (Almost all of them disputed by prominent virologists etc) Yet even psychopaths don't make their lies this obvious. 

 

How many have died from stress, depression, loneliness and the nocebo effect alone?

 

... So as I was sitting on my tree, I just sobbed with my Nan and Gran in this realisation. I felt them trying to give me strength 💜 While also hearing the comment from Hermione, in the Harry Potter books, when she fully realises that Voldemort is back "Everything's going to change now, isn't it?"

 

And yes I fully believe this is a psychological war...

...and one people need to wake up to if we are going to be able to win.

 

 

 

.

Balance after Cerebellar Surgery

When I left my neurosurgeons office after my 12 month scan and follow up, I was told I was ‘back to normal’. Now I fully understood and was enormously grateful that I was classed as ‘normal’ by the hospital, my tumour was gone, I was not needing any further treatment, I didn’t even need to take any medication. Yet I certainly was not back to the same position I was prior to my surgery. Well prior to the time my symptoms of feeling ‘drunk’ and wobbly started!

Many a time since then I have had to pull myself together to go for a walk with the dog as I was having a wobbly day and felt I was somehow buzzing inside, been extra careful not to drop cups, glasses or knives when in the kitchen, carrying an item with a very conscious thought about doing so, felt anxiety as my balance was not right when shopping and I felt a bit 'spaced', had to actively think and control how I was walking over steps, wires, uneven ground or even work out how to manoeuvre round people who were ‘in my way’. Sometimes just using a public toilet felt like a challenge as to if anyone would notice anything or dealing with the horrid feeling of being dizzy and wobbly simply from walking in a zig-zagging queue at a resort or the train station.

Yet I had no choice but to get on with it, never really knowing if it was a mental fear causing the physical issue or the physical issue causing my mental anxiety, or a nice combination of both! 😬

Yet part of me still struggled with the feeling that no one 

really believed me. 

‘My tumour was out, I should be better by now and back to normal’. 

It was certainly an invisible issue. 

Often I don't think even my family knew anything...

Frequently the balance issues were combined with the fear the feeling would go on forever. Then if I had a few good days, even weeks, when it returned I worried what was going on? Was this again the sign that my tumour could be returning?!

If having a chunk of brain missing caused this, then why does no one seem to really care, or even mention I might still struggle?

I guess I accepted it rather frustratedly. (My husband would probably say I whined through it!!😂)  I knew it was ‘my new normal’, and knew doing anything even the smallest bit stressful made it worse. – I knew that, but some days it was very much tougher to accept than others.

Balance, coordination and feeling dizzy (or wobbly) has been one of the main issues on my Hemangioblastoma Facebook group, not surprisingly since the majority of us have had a tumour on their cerebellum! Yet much of the time others say they are much better since before surgery, the symptoms are mild, infrequent, worse with stress and they have also accepted their ‘new normal’.

But a couple of weeks ago, someone posted they were still having coordination problems while walking and feel dizzy nearly 2 years after surgery, and asked “Is this normal?”

These were the replies from others who also had a cerebellar Hemangioblastoma and subsequent surgery:

"Coming up a year since op for me, wore boots with a small heel on Saturday and that threw my gyro off a wee bit. 😁"

"I am 1-year post surgery this week and I still get very dizzy especially after looking up or bending down."

"Yes, I have too. I find that I have to think about and plan my walking. It is tiresome, but you just have to try to adjust to the 'normal' that is today. I walk on the beach and uneven terrain a lot in order to 'relearn' - not easy."

"I occasionally have balance issues. Not all of the time. My wife says that I always lean to the left. 3 years post-surgery."

"I'm with you. And it is disturbing. I have been fortunate to now see a Neurologist and neuro physio. Not miracle workers but they do understand and give appropriate exercises to me. Some days worse than others".

"It's a very hidden disability."

And even after many years, others still struggle at times:

"I also have coordination issues (I'm almost 12 years post-surgery.) Like others I have gotten better at learning what makes it better or worse. For the first 2-3 years I would be more prone to get dizzy when walking in supermarkets or in crowds with all the movement in my peripheral (not sure if that makes sense but that is the best I can describe it.) That has gotten much better over the years and now only seems to be worse when I am dehydrated, or things are moving really fast past me - so things like amusement park rides are completely out of the question.  I also get dizzy if I am laying on my back and looking straight up or move my head too quickly from side to side. I also have had to change to a small heel but mostly stick to flats just because I feel more stable in them. I also have noticed that my brain gets tired a lot more quickly than it used to, so the more work it has to do the more tired I get and the more off balance I feel. This Zoom fatigue is a real deal for me! All and all I have been very luck and blessed to have recovered as well as I have but still have my days that I struggle with the new normal."

"I had occasional problems for 14 years after my surgery. My cerebellum had been squeezed by the tumour and didn't fully return to its original shape. I could correct most missteps without anyone noticing but when I walk with someone for a distance, I probably bump into them once or twice."

"I had my surgery 15 years ago and, in that time, I got probably 97% of my balance back. It should keep getting better but I'm not sure how much is better balance and how much is my adapting to my imperfect balance. Biggest problems: If I walk with someone for more than about 200 feet, I will probably bump into them at least once. If I'm in the shower, turning my head with my eyes closed is disorienting and I've learned to touch one of the walls when I do that. Uneven surfaces can be difficult, especially if they are uneven due to snow or ice."

"I've not had any scans since the initial one post-surgery, but similarly can have the odd 'mis-step' (21 years on). My brain was also very squeezed due to the cyst, and I tend to just put these things down to 'being me'. 
I don't think there is a 'normal', just a new normal for you.

There are balance exercises that may help, as might walking with a stick. I know it can certainly give confidence.

I can still get dizzy if I have to move my head from side to side fast, or look up, and get a head over heels sensation if I lie straight back. So I'm just careful / know to avoid doing these things. After all this time, I tend to forget what's happened (re tumour) and have just adjusted my ways accordingly.

2 years is still pretty early on. I know you've done a lot if walking, so you're doing the right things. Time will help, both with healing and with the way you do things / coping strategies, which just become 'normal'.🙂"

My own reply was: 

“My walking is OK. Unless I need to move out the way of something or someone. Then I am likely to wobble into them! 😬

Dizziness varies, some days I don’t notice it, days like today I feel I am having to control myself with every single thing I do. Make a conscious effort to walk straight and not trip, I find walking backwards and forwards such as in these insane lockdown queues makes me feel awful, plus the anger of having to be controlled like sheep angers me immensely 🤨 I've certainly had a few days this week of thinking will this go on forever? 😢

The frequency of struggling has definitely reduced over time, but getting stressed or doing too much makes it worse again. I’m honestly not sure if it’s at a better level or not when it does return...?

I think it probably seems worse when I have been feeling better to struggle again, as my patience is less and I am more sensitive to feeling 'off' from past experience and not knowing the cause of its return😕

I understand that you are frustrated not knowing if it will get better, but I don’t think the neuro team can ever tell you... it’s so variable on so much.

I think the more we challenge it (by walking on rough ground, or by turning head as we walk) it can reconnect the brains neurons - which help. I had to do this most times I walked for months, even years, after surgery, to get my balance back so that my brain didn’t react wrongly each time I moved.

Plus, we need to find our limits. My symptoms are FAR worse when stressed, tired or I feel pressured or need to do something else that I find tough.

Also, if someone listens to me it helps me in that they know I am struggling and just that in itself often seems to reduce any issues, knowing I won’t be judged. The more I focus on the negative and get worried about it, the more it seems to multiply...

I have definitely had to change some things I used to enjoy though, art and crafts being the main one - I just don’t have the coordination in my hands now. 😢"

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This week I challenged my balance by walking on the beach, yet feeling rather freed in the fact that walking on piles of stones isn't easy for anyone and enjoying the letting go in accepting the wobbling.

I have the gratitude and reassurance that my 4 year scan didn't show any issues. (apart from the known missing bits! 😬😄)

And from these comments from others, I've certainly been comforted that my "new normal" is indeed "normal" for when your cerebellum has had a tumour removed and been damaged.🎔

It may also help you to read my previous post 

10 Things My Doctor Didn’t Tell Me about the After Effects of Extracting a Benign Cerebellar Brain Tumour

 

 

 

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