Showing posts with label Medical Failings. Show all posts
Showing posts with label Medical Failings. Show all posts

Tuesday, 1 July 2025

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/
 
 
 
 

Tuesday, 19 September 2023

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? 

 

.


Saturday, 12 March 2022

Trauma. Why don't Doctor's listen?

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

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

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

But... I saw this neuropsychologist, and while she was vaguely understanding and helpful at the start, once she started typing my history into her computer and realised I had previously been diagnosed with anxiety and depression her attitude changed. She then implied it was just this reoccurring again, and basically what did I expect as I had refused to take anti depressants for it. I was just causing my own problems!!! 🤬
 
I was livid. 
 
Yes I know I have had issues in the past  - because of TRAUMA!!! I had a boyfriend drown in an accident, a week after telling me he would be dead within a week 🤯 and past abuse that had caught up with me. But at the time they happened I was told to basically forget about my thoughts, never allowed to actually get help with processing them. 
 
However, in 2016 on dealing with the trauma of being told I was fine, when I wasn't,  then urgent brain surgery,  feeling dizzy and not with it for weeks... this subsequent trauma had brought to the surface all my past traumas.
 
So with this information, and the fact she thought I seemed OK at my appointment, she decided I didn't need any cognitive assessments that day as planned, and thought I had Functional Neurological Disorder -FND (where there is no physical cause for the issues, although they agree the symptoms are real) & I just needed psychiatric help.
 
Now if she had spoken to me and explained she thought that psychiatry sessions would help me - that they would help address the traumas, explained why she thought I had FND rather than brain injury from either the hydrocephalus, my tumour or the surgery; understood and accepted my reasons for refusing antidepressants and also said she would still test me for the cognitive assessments either as planned, or in time, I could have accepted it easier.  
 
But she didn't, she basically insulted me, laughed at me and then dismissed me.
 
Anyway.. a lot of fuck ups and time later (not helped by the covid bollocks of them stopping all but urgent medical treatment) I finally saw a neuropsychiatrist last year, had regular follow up psychiatry sessions (although again stopping with more silly covid restrictions over Christmas) and while he helped loads in that he validated my feelings that had previously been dismissed, reminded me of techniques to help with stress and to not feel so bad about myself when I simply have times I can't find the correct words and was a lovely, helpful person. We agreed that my hands, vision, speech etc hadn't changed much.

Then after going to a booked face to face appointment with the main neuropsychiatrist, I got to the hospital to find out it was changed to a phone conversation! (And they never notified me of the change in plans) So I sat in a hospital room to talk to her on the phone -  a 2 1/2  hour round trip to use the phone! 🙄
 
BUT.... she basically agreed the same. Yes, my psychology sessions had improved my being. (Why can't they understand that just someone listening and caring improves your being, much less an 'official' psychiatrist who confirmed that my feelings were right and that I had been treated badly... it wasn't just my failings or weakness.) Yet as my physical issues hadn't much changed she would be referring me back to the clinical neuropsychologist in the main part of the hospital's neurology department - that does assessments etc - rather than just the psychology I had been having in the mental health building on the outside of the main hospital. (This is a whole other conversation as to why one is hidden in the back of the hospital grounds?!😬) I now have my diagnoses changed to 'an element of FND', as well as 'delayed grief/adjustment disorder/PTSD component'.  

Could this not just be..?
 
 'Still struggling at times from the trauma of being ignored and then needing a life saving, but life changing, surgery'


Yet with this confirmation, I honestly didn't know whether to laugh, cry or scream.
 
 "Why don't you fucking listen to your patients?" 
 
 
No, it couldn't have been that my brain got injured!? 
 
 
... that having hydrocephalus before the op, needing my surgery to be brought forward as urgent due to this issue, taking a 3cm lump out of my brain along with the intermingled brain tissue, 6 hours of brain surgery, having 40 staples in my scalp to hold it all together, or that I was told would kill me if they didn't treat soon ... 
 
 
Of course these wouldn't cause any fucking issues would they? 🤯 
It had to all be me and my psychological issues, as I have been diagnosed with anxiety and depression in the past... 🤬
 
 
 
 
 
Then literally the day I was told that I am being referred back I saw this video from Dr Jessica Taylor on how women with mental health disorders are flagged up on their medical records. This might explain a lot.
 
Is this why over the years they have ignored me, tried to drug me and blame things on any other problem than what it is?
 
Trauma. 
 
 
Be it emotional trauma from situations that I couldn't cope with, ones I had tried to mentally block out so I could keep functioning, or physical trauma in that my brain had been actually opened up and pulled apart! 
 
Yet for the second time is as many months I have been given confirmation that I was right all along...
 
 
I have just got my letter for my assessment again in May, 2.5 years from the last time I was supposed to get this done. 
 
Before someone decided to not listen to me.
 
 
You'd think they'd listen as I know when the issues started and what I feel about them.
 
It would save a LOT of time.
 
 
I also have bought Dr Jessica Taylor's new book  Sexy But Psycho. I'm looking forwards to reading it.
 
"Angry, opinionated, mouthy, aggressive, hysterical, mad, disordered, crazy, psycho, delusional, borderline, hormonal . . . Women have long been pathologized, locked up and medicated for not conforming to whichever norms or stereotypes are expected of them in that time and space. Sexy But Psycho is a challenging and uncomfortable book which seeks to explore the way professionals and society at large pathologize and sexualise women and girls.

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