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. 

 

 

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.

.

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 💖✨

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?! 😂 

 

 

Comparing Recovery Isolation & Corona

We are now almost 3 weeks into being isolated at home. My husband and I both started feeling ill on 16th March, spent the next day in bed. No it wasn't romantic, we both were feeling full of flu aches, with temperature, headache, nausea, dizziness, fatigue and me constantly coughing.

Two or three days later our two older children then started feeling ill, mainly with headaches, body aches and a temperature, so I had to try and get drinks for everyone, cook dinner etc while really not feeling up to it. I decided then that having a brain tumour was actually an advantage as it meant I was already used to cooking and doing chores when I felt dizzy and fatigued with more than a bit of brain fog! 🤔😬

A few days into our illness, the UK went into lock-down, so we couldn't go out anymore anyway. 

My husband was basically ill in bed, or the last few days dragged into the sun lounger in the garden to get some vitamin D, for 9 days. It took us both about 2 weeks to even start to feel normal again and cook without feeling totally exhausted after, even though we then lost our sense or taste and smell and still felt tired. 

At some point, or two, my husband complained about how slowly he was recovering, how fatigued he still felt, and how slow his brain was working... each time I laughed! I know I shouldn't but I did say to him, "Now do you understand?"

Almost 3 weeks later we are still a bit more fatigued than usual, I'm still coughing but otherwise things are back to 'normal'. Whatever that is now... 🤔

I know I have read someone else talking about there not being much difference being isolated after brain injury to Corona lock-down a couple of weeks ago, but now we have had 3 weeks of only going out twice to get food and I wonder ... 

Is getting over brain surgery any different to this forced isolation? 

The only more negative things now is it takes me ages to get a shopping slot online and it's not even guaranteed I will get one, half the products I want are out of stock, food costs me more money, some of the places I shop from are closed, or only open for short periods, and post is taking ages. I also can't go to visit my parents and the garden centre is closed. I am also missing my weekend escapes of going to my husband's gigs. 

It's also the same in that once again my family have no income. Last time it was as my self employed husband had to look after me, this time as all his work has been cancelled. We are used to living on tax credits. We have dealt with it before, we will do so again 💜 

On the positive side... I only felt ill for a week. I was able to walk the dog again after 9 days not 90. We have been able to tidy garden, plant seeds - all nicely growing me veggies, sort house, finish off building a recording studio for my son, put up shelves and make things and have even ordered paint to update the hallway. I have time to sort out and now need to list the 100s of books I want to sell. We have a pile of items to take to the tip or charity shops once they are open again.

And, most importantly, this time others (even those than have not been ill with Corona) UNDERSTAND how you are feeling. 

Isolated.

Thing is, 

I had already been forced to get used to it. 

Now its almost quite normal ...🤔😬

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It's a LONG Recovery...

It is now almost 3.5 years since my surgery to remove the tumour, yet I only just feel I am getting my health back.

I admit I have had for years a bit of an exercise phobia as well as health anxiety which had stopped me doing what I thought was 'too much' for many years. Then about 10 years ago I was diagnosed with chronic fatigue. Not really any answer or what to do about it, but it somewhat helped to have a label as a way of explaining to others. 

It never felt right though.

So in 2014-15 when I was really struggling with my health and energy and could barely manage more than basic tasks, it just seemed I was getting worse. I limited myself to one task a day. If I went shopping I didn't do it on a day I also took my son out. Everything was planned so I didn't run out of energy.

In 2015, after a meltdown, I decided not to help my husband with his self employed business as I just couldn't manage it all. Not that I was doing a lot to start with. 

That year gradually got worse. If I did too much I'd need to rest for a day or so after. Then gradually the feeling I was 'not quite right' started, quickly changing in 2016 into feeling a bit wobbly and off balance, then into feeling downright drunk (Even though I am teetotal) Not to mention the strange shooting pains in my neck, going into my head - like someone flicking an elastic band at me ...

By January 2016 I was almost sofa bound. I had been told by doctors, physiotherapists and osteopaths that I needed to rest my neck, that this should stop my dizziness. So as the headaches started I just stayed there more, to the point that some days I could barely get out of bed from the pain. Needing to have a routine just to be able to sit down without it feeling like my head would explode. 

Yet the doctors still didn't think there was anything seriously wrong. Although I did get referred as non urgent to a neurologist for in another few weeks time.

By the time we gave up with the NHS and I had my private MRI, I weighed 8 stone 7. I felt like I was too skinny and ill. This was the day I was told about my tumour. The chronic fatigue finally made sense! 

Just over 2 weeks later at my pre op appointment I weighed 7st 13. 

I was wasting away. 

I was told to fatten myself up. But as I didn't have much appetite I just ate loads of chocolate!  And I did get to a pound or so over 8 stone the day before my op. 

This picture was taken on the 15th May, 

the day before I went to hospital. 

Even though I only spent 4 nights in hospital in total (2 before and 2 after surgery) by the time I came home my legs were so thin that when I looked at them my shinbone was sticking out as the rest of my leg fell away from the bone. It was horrid.

I had so little energy.

It took me over 3 months to be able to walk a short lap around the park with the dog again. I couldn't even manage to carry a washing basket upstairs. When we went to the beach it was as much as I could do to walk through the sand to get to the sea. I was shattered after, needing to sleep.

For the rest of the year I still had to rest after I did anything, even just walking the dog. 

However in March 2017 I decided I needed to challenge myself to get fitter, plus also challenge my belief that I couldn't exercise. So I tentatively started to go in the outside gym as I finished the dog walk. I knew I looked pathetic so I tried to go there only when no-one else was there. Thankfully it often was!

 

One exercise machine I could barely even lift, as it hurt my neck so much. Well I managed to lift two! 😂 Three of the others I could only do between 10-15 repetitions and I was shattered, although I did manage 30 on the leg press! I could only manage this and then had to come back home to rest, feeling my brain was shattered as well as my body.

Anyway ... Despite wondering why I kept it up, hoping that at some point I would get the benefit of being fitter- and not just far more exhausted, I continued with using it whenever I could. Yes I missed whole weeks at a time, but even in the winter I tried by putting a plastic bag over the seats so I could use them when they were wet. 

The fact my collie dog Enzo is a creature of habit and walked into the gates of the gym each day without asking probably accounts for most of the reason I went! 😬

Anyway... This summer I have finally noticed the positive side effects. 😊 

I felt muscles in my arms!😂

Not only that I no longer get so shattered after doing almost anything - my body is fitter from the exercise and no longer constantly reducing my limited reserves. 

To some what I do is still useless and laughable, but I know how much better I am, and where I started from. I am now able to do 100 repetitions of each of the 3 arm exercises, and the one I could only 2 of I can now manage 20. 😁 A 10x increase is not bad! Plus I have almost a similar % increase with being able to use the various other weights, 'twisting' waist toner or my time and speed on the cycle machine.

I have for the first time in my life muscles that I can feel, and almost see, in my arms. The habit of making myself go there has finally become almost pleasurable! 

So many times it would have been FAR easier to stop...

But for someone with chronic fatigue for years, brain surgery and losing most of my muscle mass and weight from being stuck on the sofa for six months ... I am proud of myself. 😇









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What Do I Wish my Family and Friends Understood After I had Brain Surgery?

Being diagnosed with a brain tumour, only having one appointment my neurosugeon before surgery, not having any other information other than this meeting, yet being told I needed 'urgent' brain surgery and then having the operation brought forward as even more urgent... all within a month of finding out about I had a brain tumour. I had not had much time to register what was happening.

So when I left hospital (which was only 48 hours after the end of surgery) I was in shock.

I felt violated. 

Confused. 

Trying to work out 'why me'? 

Still terrified. 

Not quite believing it was over. 

Yet elated I had survived.

I felt extremely vulnerable and delicate. My head and neck felt so sore. I couldn’t lean on it, much less sleep comfortably, I needed propping up with pillows, but I could barely do it myself. I felt like a newborn. Everything felt slightly numb.

I couldn't cuddle my 9 year old son, I couldn't even have his weight on my shoulder as it hurt my head and neck so much. I desperately wanted to continue to mother him as before ... but I couldn't. I had to fix and put myself first. Not something that had happened since I started parenting.

I also had all three of my older kids taking qualifications (GCSE's, BTEC and a Degree) yet I could do nothing to support them. I knew I had to put me first. Anyone offering support for them was extremely appreciated.

Then there were the physical effects that I needed to get used to:

My vision was awful, everything was a bit blurry. Plus I felt my world was constantly spinning. I couldn't watch TV to relax as it made me nauseous, it was worse looking at a computer screen. I could manage to send a short text and that was it, I would have to stop and let the nausea subside.

After a week or so I was all but begging for the dizziness to stop, 

to be able to eat dinner and see the spoon go in a straight line to my mouth, not feel like I was eating on a fairground ride.

(I have written about the other side effects I had previously, please see The After Effects of Brain Surgery and Cerebellum Surgery Side Effects)

Household noises such as the washing machine were too much, even a games console whirring was too loud and constant. I couldn’t cope with too many people talking.

Lights also hurt, the light coming through Venetian blinds was in lines and felt like it was flashing! My brain couldn't handle any stimulation.

I spent ages with my eyes shut!

Doing anything was hard. Even walking to the toilet was tough. It hurt to move, I needed someone to walk with me.

I struggled to sit on the loo seat correctly, my body felt fuzzy and so I had to double check I was doing everything ok. Remembering to flush the loo, wash my hands and dry them seemed to be a lot to remember in order.

Trying not to wobble or trip over something, or even just navigate the corners and turning to shut the door.

Finding the right words was also hard, most of the time I could say what I felt relatively well (albeit a little slowly), but try and describe something or give instructions of any sort (where memory came into it) was awful. I knew the thoughts were in my head, I just had to access them and this wasn’t a fast response time.

I was terrified on feeling so ‘out of it’, especially when I got tired. Each time I needed to sleep I had to trust that I would be OK, and it was ‘just’ tiredness and not that I was getting ill or having a seizure or blacking out.

The first couple of nights after I came home, I made my husband just hold me as I kept dreaming of a horrid metal taste in my throat and the feeling that someone was putting a tube in it!

Waking up left me extremely groggy. It took a while for my brain to wake up, and even longer for my eyes to do the same.

I would often lie there with my eyes shut for a while after waking not even realising I hadn't opened them yet.





I wanted someone with me 24/7. To calm and reassure me when the pains were too much or I felt dizzy (I was so scared I would fall over or have a fit) … and also wanted someone to just listen.

Please just listen.

You cannot put it right or change things, 

but just listening and understanding helps SO much. 💜

It was great to see people visiting, but also, I couldn’t stay awake for too long. I needed a morning and afternoon nap (for an hour or so!) for months, if I didn’t then I felt awful and got really exhausted later.

For several days, even weeks, if I tried to do anything even as simple as ordering online shopping, going to an appointment to remove staples etc- it just wiped me out. Physically and mentally. Even months later going to one place a day was more than enough.

As I had barely been able to move off the sofa for months, my body strength and muscle mass was bad enough that even walking for a short distance was exhausting. I just had to build my strength up slowly. Very slowly!


Even months later I was still unable to think clearly, or for long:

 The brain fatigue lasts for not only for months, but years...

I finally feel I am seeing positive improvement three years after my surgery.

I am now able to stay awake for a full day and even go out for the day without having to 'pay for it' later with being extra fatigued.




Yet still, if I have got particularly tired or stressed, my brain starts to 'switch off' again.

I cannot find words, I stutter, I cannot think clearly or make decisions, and my balance and coordination goes with it.

I may act it... but... I am not drunk!!! 

Even though my surgery was in my cerebellum, it effected so many of even simple normal day to day tasks. I could barely read my own handwriting, and hardly anyone else could decipher it!

I struggled to help my son with 'school' work, I couldn't read things out loud correctly, I couldn't say them correctly either.

I felt like my brain was failing. 

I felt like a failure - to myself and my family.

And even three and a bit years later...probably the hardest thing to 'get over' is the fact that:

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