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. 

 

 

Cerebellum Survey Results

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

When I copied these results 54 people had responded.

Q1

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

Q2

Do you struggle with these issues?

The answers to 'other' were:

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

 

Q3

Do you have any of these functional issues?

Q4

Are you affected by any of these?

Q5

Have your symptoms changed over the time since your surgery?

Q6

Do you class yourself as having a disability?

Q7

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

Other :

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

 

Q8

Do your issues affect you…

Other:

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

 

Q9

Are you?

Q10

What is your age group?

Q11

In general, are your issues…

My first thought on seeing these results was 

'Its not just me!', 

combined with almost instantly with the sadness and anger of 

'Why dont they believe us?'

 

From Q 2:

73% struggle with fatigue.

49% have brain fog

49% have issues with concentration and attention

45% have memory issues

43% struggle to find the correct words

37% forgetful

35% confusion/ decreased clarity of thought

24% struggle to type/write words

23% say the wrong words 

17% spelling has got worse

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

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

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

 

From Q3:

55% balance issues/ataxia

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

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

32% weakness

32% whole body coordination/clumsy

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

28% tremor/twitching/shaking

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

23% vision that changes

20% sensitive to lights/flickering

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

15% double vision 

4% nystagmus /eyes flicker

13% have none

Q4

63% Anxiety

34% easily overwhelmed

34% depression

34% no patience/short tempered

32% fight or flight/startle response exaggerated

28% nerve issues in head

26% nerve issues in body

24% nausea

20% sexual dysfunction/loss of libido

19% insomnia

19% motion sickness 

4% psychiatric issues

8% have none 

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

 

Q11

61% worse when tired

50% worse when stressed

43% worse when anxious

28% variable for no clear reason

20% constantly the same 

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

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

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

 

Things need to change. 

 

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

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

 

.

Cerebellum - it isn't just about balance!

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

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

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

 

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

 

 

Are they the actual experts? 

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

 

Or could actually asking the patients 

 

'What things do you struggle with now?'

 

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

 

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

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

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

 

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

 

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

 

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

Cerebellum Brain Damage: What Causes It & How Rehabilitation Works 

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

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

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

Dealing with Sensory Overload After Brain Injury

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

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

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

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

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

Missing area in cerebellum

The outside is missing!

Showing how messed up my neck is too!

Empty Inside

How can I explain to you,

What I can't even understand myself.

That I just feel empty inside.

Or that a part of me feels broken.

Just following the motions in living,

but half of me just feels dead.

I don't want to die, 

just not too sure I want to live either.

Well at least not like this.

I feel useless.

Worthless as I am.

Constantly a burden to you all.

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

I can't cope with my body.

Don't want the constant struggle.

Aches, pains, brain fog, fatigue, 

always fucking hurting or needing to rest.

Having to take 5 minutes.

Trying to switch off.

Yet.

Never feeling rested.

Not able to fully relax.

My body pounding or exhausted.

Tingling, itching, sore or just plain numb.

That invisible itch in my skull.

constantly reminding me of that scene in Harry Potter -  

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

I have to be distracted to be happy.

Get myself out of my head. 

Switch off my negative feelings. 

But what the fuck can switch them off?

 

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

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

forget what I'm doing while doing it.

Before someone notices that I'm not talking properly. 

That I can't pronounce something, 

Or said the wrong word.

Start dropping things.

My hands forgetting how to work correctly.

Can't see right.

Blurriness descending.

Hand eye coordination gone wrong.

Unable to move out the way.

 

While my head starts buzzing and pulling, 

Like its twisting inside.

Feeling all its weaknesses instantly. 

The physical and the mental scars start to breakdown.

And sleep tries to smother me.

Again...

 

Go to sleep.

Start again later.

Again.

Again.

Is it me just being weak?

Do I need to just get on with it?

Yet, if I try, I just fail.

I just don't know what to do.

The world is overwhelming. 

I don't know where to start.

There's just so much I need to do.

That I want to do.

But I just can't remember what. 

 

So I do nothing,

just scroll on my phone.

Until something reminds me.

Or I just want to cry.

Sink into the bedsheets forever.

Forever. 

Their tests say I'm fine

Because adrenaline hits well when faced with a challenge.

Something to make my life worthwhile.

A meaning.

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

No I'm not, 

And just maybe, just fucking maybe, 

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

That's,why I'm struggling now. 

Not that I've always been average,

but because my brain has changed.

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

The constant, drip feeding of the nudge team.

The 'stop you thinking' media.

The glaringly obvious manipulation and agendas.

The lies, the puppets, the distractions.

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

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

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

That of their children.

People I love.

I don't want to be part of that.

It breaks me to think of it.

I don't want to know.

I can't agree.

Exhausted even more from the pain of that division.

My babies...

I try and make plans. 

It works for a while.

Then exhaustion returns and I have to stop.

For a day, or a week.

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

But I can't cope.

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

So when, or if, I ever catch up.

(When others help out)

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

Over and over.

Books are half read.

Clothes are half sewn.

Jewellery never finished.

The crochet needle still with wool on it.

Letters never written.

Survey results never published.

Blog posts in draft.

So many to do lists.

Their reminders silenced long ago.

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

But it's too much.

So I just don't start.

And once again.

Tears just roll down my face. 

As I'm sitting there blankly.

Empty inside.

Until a customer knocks at our door,

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

It feels like an act.

It's not me.

 

Or we go out.

Escape the reality 

Drowning in natures beauty instead.

Silence.

So healing.

So, so healing...

At gigs, I'm a different person.

The hidden me appears.

I even look different. 

I know I do.

I can feel it.

The switch has flipped.

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

Helping them, 

Being of use.

Being needed.

Being appreciated.

On top of it all for a while. 

Hyper focused and organised.

Content.

Happy.

Even joyous!

 

And then we get home.

The energy vampire in this house haunts me.

Tiredness returns.

My brain starts switching off.

My face changes.

A part of me disappears again.

It's been used up.

Washed away with the make up.

And the crap part returns.

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

 

Empty.

 

Empty inside.

.

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 

..

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?! 😂 

 

 

Medical Cannabis

I posted a link to my blog post  'Scanxiety and Medical Cannabis' on a few other Facebook pages for either brain tumour or traumatic brain injury (TBI) patients last year. I was astonished with the sheer amount of others who openly admitted there that the also used medical cannabis for their brain injury.

 

Why is it not openly spoken about that cannabis is helping

 brain injury patients?

I actually copied down four A4 pages from just the comments! (excluding any names)

Here are a few of the replies:

"I swear my cannabis has worked wonders for me. I have taken no prescription drugs, only self medicate with smoke. Great for depression, anxiety, pains overall, keeps me on a normal level - but most won't understand a brain injury and just think we are druggies😐"

"Totally agree, I hate taking prescription drugs and not a massive drinker. I’m not ashamed of how it massively helped me. I used a vape version along with more CBD drops for most of before and after my treatment, it helped with my nausea and anxiety! It also helped switch my brain off so I could sleep!"

"I agree! I would recommend the vape pen version!, I’ve tried many edible versions but because they take a few hours to properly get into your system, its hard to judge how much you need, I much prefer my vape pen as its a more instant relief, especially when my anxiety is high or I'm too overwhelmed! I really only micro dose with it as I dont use it to get ‘high’ and I just take 1 or 2 puffs and instantly my head stops being frantic, (A vape also means I can take it out with me and no one is the wiser 🤷🏼‍️)"

"I made sure I spoke with my neuro team quite openly about it and of course they are not at liberty to say to use it but they had no reservations about it!"

"I never used to use it before my ‘terry’ appeared and I made sure I did my research before hand 👍🏻👍🏻
If speaking out about using it can help someone else with crippling anxiety and PTSD then its totally worth it! Thank you Jo for talking so openly about it!! 💕💕"

"I use cannabis regularly and while I have no medical proof to share, I am 4 years living with a GBM4 where my prognosis was originally 15 months. I believe there was a big study in Madrid University on the subject, google that for more info."

"I take the CBD form of cannabis. I take no meds for my brain tumour and I do believe that its helps to keep it stable. No shame to taking it as I do believe or works. Irrespective to other think if you feel it does something for you then do it."

"I agree with this, but I would suggest to start slowly... Think 'micro-dose', until you find your level."

"I take CBD and it has kept my tumour stable since starting to take it."

"I use cannabis for the migraines that no pain med can touch. It usually clears it up fast."

"Yes, it's the cure 💚 that and magic mushrooms 🙏💐 it repaired my brain damage from being unable to work or even hold a conversation to applying as a background extra in a Hollywood movie (and I got the part!😍) I would recommend cannabis in any form to anyone 💚"

"I smoke some every night to get out of pain and to sleep. It is a God given miracle herb."

 "Use it nightly. Have been for past 20yrs."

"THC with CBD helps my severe seizures tremendously. Nothing else works as well."

"I use it twice a day and do pretty well...( Sometimes more). It just depends on what your need is. For some people it does not take much at all. For me I have mental health and pain management issues. But I can tell you I have not had a migraine in two years."

"Cannabis is my primary source of medication, and has been for 11 years."

"Edibles are the ONLY thing that helps me sleep."

"I’m in NY and have my medical card.... life saver for pain and sleep."

"My dad is a massive stroke survivor, he gets his to avoid a seizure. It also helps the awful pain he gets in his “bad” side."

"I use it all day everyday. Helps with the all over body pain and with the anxiety I have every day."

"I have had my medical card since 2014. Best thing to happen."

"I used to drink alcohol a lot before my TBI but since I got hurt I dont drink anymore. My doctor's told me to stay away from booze because its not good for brain injury rehabilitation. I do use cannabis medically. I used to use it to just get hi before my TBI but now I use it instead of taking the pharmaceuticals the doctors were trying to get me hooked on."

"There are two types, Sativa and Indica. Both with vastly different outcomes. Before you invest heavily, you will need to try different varieties that are prescribed to you. My mom needs Indica for her stroke injury and husband needs Sativa for his bike accident coma 35 years ago.  I use CBD pain cream for my bad knees, but I work for the state, so THC is a no-go. I love the CBD!"

"I use cannabis daily. My brain injury caused seizures and I'm still trying to stop the seizures and I'm trying to find the best strain for that."

 "I use high THC-V strains, helps with energy and focus."

"I use both CBD and a THC. I use indica for sleep or during a migraine to help me relax. CBD is a life changer....better than any other pain meds I have ever been given.2

"I use it daily. Helps to ground my flighty brain."

"🙋🏼‍daily user here.

Yes! high CBD low THC tinctures. 4 drops under the tongue. Highly recommend for settling/silencing body and mind for a full night's sleep. I especially love the fact that I can have a glass of wine with dinner and not worry about interaction if I find I can't get to sleep. Truthfully, it's a game changer."

"Yes, it's the only thing that makes my headaches go away."

"I have honestly, I find it brilliant for when I get really anxious or have bad symptoms, has to be done in moderation though as it can make me feel worse."

"I’m taking capsules best thing even if it’s for a decent sleep xx"

"I swear by it the THC and CBD oils x"

 

 

Planted in a raised bed in Ground

This book Medical Cannabis was also really helpful in reassuring me cannabis was safe to try, and I will look at these other books recommended in their further reading - The Cannabis Encyclopedia and The Cannabis Grow Bible, when I need to find more information on growing.

                

£30 = enough plants to last all year.

 

 

 

        If you are interested in growing your own... 

        Cannabis seeds are available from Seedsman where 

        you can search under various medical conditions 

        and what type of seeds you want. 

       They need to be brought soon if in the UK as to

        grow outside they need to be planted around April.

 

 

 

If you have ever grown vegetable plants and have a vague knowledge of growing, then planting the seeds in a tray on windowsill and moving outside (covered from slugs) when a few inches tall outside worked fine. I grew mine alongside my tomato plant seedlings!

 

You then need a tall greenhouse for when they move outside (that you may have to raise up even more as they grow TALL) and either very big plant pots or an area in the ground. I used a raised flower bed, filled with tomato compost on top off the garden soil. (as you can see above) Make sure you only fertilize them with edible plant foods, and keep them covered from slugs until they are about a foot tall, then they are pretty resilient. Just make sure you undo the greenhouse cover when your neighbours aren't around!!

 

Seedsman have plants both with and without THC (the part that makes you high) and CBD, they also have various conditions are listed under 'medical seeds', you can then chose if you want a low or high THC amount.

I personally stopped using just the THC plant after my nightmare episode I wrote about here. Once I stopped taking it (and I didn't ever take enough to make me feel high, except this one disastrous occasion) I also felt my anxiety reduced (although this could have been as I had my scan etc) so I totally stopped taking any THC plant for months. In February I did try adding a small amount in with my high CBD mix, but did not notice any benefits, in fact when I stopped I felt my anxiety reduce again. So I dont think my body tolerates the THC well.

Last year I ordered these Dinamed CBD plus which grew really well, but this year they were not in stock so I am trying Queen CBD 20:1 which suited many of the reasons I chose to take them including Anxiety, Fibromyalgia, PTSD and Stress. I will see how these grow this year!

I know that growing the plants is illegal in the UK, but my GP knows about it and says she could probably get me a medical cannabis prescription, but personally I'd rather use a plant that I have grown than a pharmaceutical type product any day... I know exactly whats in it and trust a plant more than a drug company. 

I am not taking it to get high, and have a far different reason to how many use it. In my eyes if the legal drug - alcohol - is available to all, so should cannabis. I fully believe if enough people start growing their own for medical reasons we can stop the criminalisation and make it a valid treatment for many. You can also chose to buy a CanCard if you want the extra reassurance.  

If all these brain injury patients above recommend it, then it should be available to all - a years supply for the price of 3 seeds, some compost and a greenhouse. 🌱

 

.