Hellonwheels – Catch-up

Hellonwheels Catch Up

And like sands through the hourglass, another week gone by, you might recall I mentioned a subliminal message would appear in my posts. Yeah, you didn’t miss anything because I failed to mention to my lovely administrator and she edited them out. Seriously, the patience of a Saint has Noelle. Will not forget again

You might also have noticed I mentioned despite all the broken medical system everywhere, I have had two surgeries this year, I mentioned the recent surgery, this is me circling back to the previous surgery.

Late January, I had carpel tunnel surgery, for those of you that might be new to HellOnWheels, I’ve been one-handed since 2007, after the fall-out from the radiation treatment to my AVM (Arterial Venus Malformation) and after a disc-bulge surgery in 2011, with the loss in half my eyesight making my left-sided Hemiplegic all but complete, I had managed to get to fifteen years before living independently one-handed, caused my next surgery to be far more pressing. Part of being naturally right-handed meant I just got on with getting on with life. It may have taken longer, having teased my brain causing migraines. Getting my brain around peeling a carrot one-handed, but you work it out. Try doing that one-handed. That can be this week’s challenge. After years of having osteo, often weekly, the pain in my right palm overnight that would wake me and I would need to get up and shake out my whole arm to release the pressure, so my hand would stop hurting and feeling would return. It was time, before I had nerve damage, a recommendation from my Mum and a call made, I had my referral.

After suggesting I would beg, borrow or steal the dollars required for my surgery, an appointment was booked for not long after. I managed to borrow the money from the Dad Bank. Later paying him $50. Every month and texting him each month when I’d transferred to him.

The actual surgery was only possible because I had it done privately. In his rooms in South Melbourne. His wife providing the reception duties. I had hoped to go through the public system even going back to the country town I’m from and my surgeon was also from. But, time was rather important, not wanting to risking any nerve damage. The surgery was performed with two local anaesthetics, while I was awake. I confess, I had my eyes closed. He was working on my right hand after all and my peripheral vision on my right is definitely my sharpest and I could see him over my hand. The tool was like a knitting needle where a blade came out from inside to cut the tendon in the top of my hand, that he had diagnosed from performing an ultrasound before the surgery. The worsts parts was actually the injections. I always forgot how much they sting. I was wondering if I would swear, but alas I made us all proud; I did not. The surgery was completed in thirty minutes. I will cover this in a bit more detail in a future post, the unexpected and the embarrassing and numerous, but today I’m trying to keep it short and sweet. But while the carpel tunnel issues have been solved, I am noticing little twingy pains and niggles telling me it’s not the end of my right hand issues, this will not stop any time soon.

Censorship

Censorship

When you read this post, please keep in mind I’ve had my brain injury over fifty years and I’m not even fifty yet. I know I only learned of my AVM (Arterio Venous Malformation) when I was thirty-four, but my diagnosis meant many symptoms I’d experienced all my life, finally I had some meaning.

So, I guess it was going to happen sooner or later. I just always imagined it might be a family member that thought to insist I edit my blog. But then, my family would need to read my blog. We all realise blogging is about sharing thoughts, ideas, theories, witty stories (I hope in my case), but thought-provoking stuff. If you don’t like one post or a word, think about why? Have a Conversation. It’s how we learn new things. Get educated.

I didn’t ever think it would be from an ungrateful group I’ve donated ten plus years of my life volunteering for. Talking members off a ledge, explaining and giving context to past endeavours and advocating for all the efforts of past volunteers so everything they have contributed isn’t burnt to the ground.

Seriously, so many emails.

People insisting on using “Reply-All!!!!!” Can people please stop doing that? Just stop it!
So, having been offered an ultimatum. I think nobody will end up thrilled with how this plays out.

I regret in my last post I used the word slut! Note, if you read the post, I was not suggesting sharing a brain injury made people have loose morals or ethics. I regret using this term. I also dislike the fact that a ‘Player’, usually a reference towards loose men as being something to celebrate and receive a pat on the back for perceived conquests and all the terms for a woman that may choose to live a similar lifestyle is ugly and offensive.

From Wikepedia – SlutWalk – Wikipedia Please read the whole article, before commenting.

SlutWalk is a transnational movement^[1] calling for an end to rape culture, including victim blaming and slut shaming of sexual assault victims.^[2] Specifically, participants protest against explaining or excusing rape by referring to any aspect of a woman’s appearance.^[3] The rallies began on April 3, 2011,^[4] in Toronto, Ontario, Canada, after a Toronto Police officer suggested that “women should avoid dressing like sluts”^[5][6] as a precaution against sexual assault. Subsequent rallies have occurred globally.^[7]

The protest takes the form of a march, mainly by young women, where some dress in clothes considered to be “slutty” such as short skirts, stockings and scanty tops. In the various Slutwalks around the world, there are usually speaker meetings and workshops, live music, sign-making sessions, leafleting, open microphones, chanting, dances, martial arts, and receptions or after-parties with refreshments.^[1][8] In many of the rallies and online, women speak publicly for the first time about their identity as rape survivors.^[9][10] The movement’s ideology has been questioned and its methodology criticized by some.

From the Washington Post – SlutWalks and the future of feminism – The Washington Post

While I choose to be single and celibate, as I have done most of my adult life since I was a young adult, when I wasn’t in a relationship. I have had a friend who chose a very different lifestyle. I never judged her and loved to have our catch-up brunches to hear all about them. So, I apologise if anyone was offended and I ask you read the rest of that particular post so you get the context of personalities living with brain injury and how I think I’ve developed my personality in spite of and around my brain injury.

Now, the fall-out to me not doing what I was asked to do (edit offensive words from my previous post) apparently could result in my blog link being removed from the website of the Not for Profit I’ve given my time to as explained above. You have no idea how much I had to negotiate to make that happen in the first place.

But if you know me? You know I don’t give in to such demands. It is MY BLOG after all and later this year I again need the support to remain a voting member on the board to help create change and support worthy projects, etc. and if I don’t get that maybe it’s my time to move on? Maybe I get a little selfish for a while, get it in my community more? Go do coffees and write. I have neglected my writing lately.

I do not know if people realise how busy I really am. But I DONT GOT TIME TO GO OVER SCORCHED EARTH! I’m not doing everything twice!

So lastly, I hope this explains some of the things and settles and calms any ruffled feathers from my previous post. Who knew right? And if you understand, empathise or appreciate what I’m trying to do? Please comment or hit Like!

Perceived Personality

Perceived Personality

There is an understanding within the ABI community, with the elders (if, ….) to that end, I say this in non-medical terms.

If someone has a life before they get their ABI/TBI, after this event and the fall out and dust settles, so to speak. They will retain that personality they had before the trauma. If someone was a player or a slut (I know, harsh words) or if they were funny, or love certain things. They will retain those traits after their ABI.

It is different when someone young, under-developed gets an ABI/TBI and even after an ABI/TBI etc, etc, the time often after the trauma improves. Five, ten, fifteen, twenty years, etc down the track.

I often wonder because I’ve had my AVM (my ABI) from before birth. How this has impacted my perceived personality. Because I think I’ve developed my personality and quirks around and despite my AVM.

ABI – Acquired Brain Injury

TBI – Traumatic Brain Injury

AVM – Arterial Venous Malformation

Different

Different

Was catching up on some of my data entry today when I realised how well I cope with my brain injury. So well, people often forget my AVM/ABI is not so much mental but physical.

I guess the point of my blog is to educate people that all brain injuries are different. While catching up on my data entry, which is a lovely excel spreadsheet where I record the carer hours and other services for future reference, I realised a date in November 2020 I had so much on at the same time it wasn’t funny. Yet I can cope. This particular day, I had my Personal Care (PC), carer for an hour. My community access carer, despite not going out arrived just ahead of the PC chick. All of which I can work with, as can they.

I still had to be presentable as I had a committee meeting via Zoom. While I don’t do make-up when I’m not out of my home (apartment!). I won’t do make-up to stay at home, but I do need to not do colour and then I remembered my MOTHER was here. It was not planned; it was very last minute the night before. But it is what it is.

My mum had gone out to her appointment and returned by the end of the Zoom meeting.
By which time my handyman had arrived. My handyman comes once yearly for a spring clean. Does windows on the inside, the fan covers in the bathroom, any areas on walls or floor that take a serious hit and it’s not the light cleaning my weekly HC (home care) carers need to do. Suddenly with too many warm bodies in my apartment, a complaint goes out that it’s too hot and can the A/C go on? Well, it’s set still too hot but here’s the remote, work it out.

Still three people are in my home and I’m to prioritise what everybody wants as the most important thing to solve first. At this point I get a bit grumpy. OK! We are working on it, if you can’t help, don’t be part of the problem my mum gets the heater to cool air.

There is a new calm. Mum makes her lunch and coffee and departs for her long drive home. What she was here for had been achieved.

Despite what she may think of how I feel about my mum. My mum is a ROCKSTAR! She really is.

The second carer gets her stuff done for me and departs. It’s just me and the handyman and a recently departed carer visits for a bit. She distracts the handyman briefly with talk of fruit trees and such. I’m meant to roll with the punches, it’s fine. The handyman goes, as does the visitor.

My brain is fried. But I coped with all the craziness. All these things, they wouldn’t normally happen ALL AT THE SAME TIME.

Busy

Busy

I have never known how to not be busy. I’ve always been busy. When I was 16 years old (yes! back when there were dinosaurs!). In the 1980’s, I was a full-time high school student, I worked part time as a checkout chick. I was doing hours of art folio preparation to get into college, I was a live-in babysitter to baby sister and I definitely didn’t have time for a social life or boyfriend. I did the household ironing and more than my share of the housework.

All while planning to be a poor art student, didn’t do a 4,000-word assignment until my first year of tertiary. I was still living at home then and it was all hand written. No computers, so many drafts, then only the battle of whiteout back then. You kids don’t know how good you have it.

So, it shouldn’t be a surprise that when I moved to Melbourne to be a poor art student when I was nineteen, that while being a full-time student, I transferred my supermarket job so I was working part time and being 100% responsible for my shopping and cooking. I introduced a little social outing in the form of going to clubs. I met one woman at college that went to a big commercial club very close to me. In simple terms, it was a very big wog club that was like a meat market. Huge dance floor in the middle of the room, upstairs, you spent much time going for a walk around the perimeter with a friend. As you travelled around a line forward and you just kept to the left. To your right was a line of people going the other way. As people passed on your right A guy’s face would loom into you to go for a kiss. Brushing them aside, all of a sudden, they would be pulled away by their girlfriend who had them by the hand and asking why they seemed to be holding them up. This is not why I stopped going to this kind if club.

The first few years I studied in Melbourne (two years actually) and I would go home long weekends and maybe a week of term break.

At Christmas, I’d transfer my supermarket job back to the country and also pick up seasonal work in the farm of blueberry packing. The last season I did some picking too, but while very stressful, packing paid better.

But to take a break from study and be at home in the country over Christmas meant I was literally working from 6am until 9pm with only a few hours off in the middle. Not even after college, I picked up some work in retail and clubs, which I literally set the hours according to what I considered it required to ‘get the job done’. So, my weeks, day and night were full.

I guess I’m saying life before my disability was always hectic, maybe why little symptoms I could later contribute to my AVM diagnosis went unchecked. So busy, my life has always been busy and I’m sure it’s not the last time I will cover this topic, or topics.

Who Am I?

Who am I?

My name is Helen, I started blogging in 2015. Since then, I’ve written over 600+ blog posts and acquired over 280 followers all around the world.

I’ve really let my blog speak for itself and not really marketed myself in any commercial way to gain a larger following.

Pre-Covid I was sharing three posts a week. Hellonwheels, is me doing brain injury differently. I’ve had my brain injury for over 48 years, only learning I even had my Arterial Venous Malformation (AVM) at aged 34 when I was really stressed, as a result of workplace bullying. After diagnosis and treatment, I have been left with stroke like symptoms.

It’s not easy being a high-functioning Acquired Brain Injury (ABI) and it’s even harder to explain. I have a good memory, a love for music and food – things some people with brain injuries can’t enjoy.

I’m a single-barren spinster, often including further descriptions, straight and fucking fussy!

I have strong opinions, which may or may not appeal to everyone. This is why I include stories of my past, little moments of life, foodie posts and beautiful things from nature. 

Life is short and often few moments or opportunities go past, so I try to share the ones that I have.

I hope you will take a moment to look up Like, Share and Follow. 

Emphasis On ‘A’

Emphasis on ‘A’

Then, for the first time really ever, I dated. I dated a guy, the emphasis on ’A’ and like usual, some bitch had gotten to him first and he was more Roadkill than anything else.

We did the date thing for whatever and I had, had my diagnosis of my AVM and didn’t know what life and treatment would bring, but I had hopes I meant something to him, more than nothing.

After a third date that was more about us being ‘friends’ and watching films at my house (because my house had a heater and a cat!) etc.

*Sidebar; Imagine watching ‘Blue Dress’ with a new boyfriend, awkward!

So, I set about solving the boyfriend’s issues, trying to be a supportive girlfriend, hoping he would do the same with my treatment and recovery.

Let’s do a stocktake: –

1. Alcoholic – fixed that. 🗸
2. Separated, not divorced. 🗸
3. Permanent Resident in Australia. 🗸
4. Support him parenting his daughter. 🗸

This is starting to sound really bitter, which I’m not. In reality, he had his plans and I had mine and his did not include me.

It wasn’t until after we broke up and he was moving out to interstate for work that I learnt his mother did not even know I existed.

So, lesson learned.

If he had loved me, he would have still been here, with me and lord love that child, but not being a co-parent with the family make-up of that family, I dodged a bullet. Really!

I would have given it a red-hot go but I’m lucky I didn’t have too.

 

 

Groundhog Day

Groundhog Day

It fucking happened again. I know I started with my favourite word, but you shouldn’t assume there will be lots in this blog post. I’m just emphasising the fact that it’s like a new round of people are coming into my sphere, (didn’t know I had one like I’m a planet, right) but every now and again, I’m somewhere I wouldn’t normally be and new people will ask me ‘what have you done to your arm?’ Every fucking day, I leave the house and I generally mention it’s because of my brain injury, because it’s the perfect way for people to learn sometimes Brain Injury walks and moves amongst them like a normal person.

Sometimes, brain injury looks like this hot mess that I look like. So, I tell people, depending on their response I might, no will follow it up with my standard follow-on that my brain injury is NOT SELF INFLICTED.

Because, the second assumption is that all brain injuries are and I will describe a little more info. So, it’s understood how I have had my AVM (Arteriovenous Malformation) all my life and didn’t know it until I was thirty-four.

Then there’s the next round of questions. Well intended, sometimes the way I respond, I hope they read my mood correctly and stop asking questions.

Maybe? No! Don’t be ridiculous.

A few weeks ago, at my favourite café where I go because, well I love it. The staff have gotten to know and I don’t get treated like a weirdo/freak and I don’t get the questions about ‘what have you done to yourself?’

I was in the room, I’m a permanent fixture. Two men came into the room and asked me straight away. The question, don’t ask me to repeat it. And I did in layers of –

1. Brain Injury
2. Not self-inflicted
3. Had it all my life, just didn’t know
4. Bullied in a stressful work environment

After he had taken all of this in, I realised I’d disclosed way more to a complete stranger than I normally would have and it had all happened so naturally, I hadn’t stopped (he didn’t look horrified), but I felt a little raw and vulnerable.

I had a moment of weakness and almost cried. He obviously realised and he leaned forward and grazed the back of his knuckle against my cheek and told me “You’ll be OK”

And I was really surprised. Now, I don’t want to need to remind people however, if you made it this far? Please hit “LIKE”

Hate feeling needy, but we all have needs and, in this case, we all need validation.

Twenty – Three

Twenty-Three

Today, I’m going to take everyone back in a time capsule or a time travelling machine to when I was about twenty-three.

Ah, good times, right? Well, we shall see. I’ll let you decide.

As you know, when I was younger in my twenties, I worked in nightclubs in Melbourne. Until recently, I thought I’d worked in clubs for a whole ten years, but when I did some ‘hard maths’ I realized it was only five years.

My club ‘work’ (it’s still the right team if my output of hours and efforts did not equal my income) was several day’s a week and as many night’s as 2-5 nights a week. Despite my best efforts, at one point I found myself without a roof over my head. I had been living with my older sister and when we finished the lease on a house, she found a place quickly and moved out and then I struggled.

Apparently, it’s really hard to imagine when I said ‘I don’t drink, so won’t becoming home drunk and vomiting’ and don’t lay around all day is not much of a sales pitch when promoting one’s self as a prospective housemate to strangers.

Having a good club network of friends, I managed to find a space on someone’s lounge floor for a small amount of money so I wasn’t out on the street.

These kids were younger than me and the meals I cooked and shared were the only meals I saw concocted from their kitchen. Needless to say, I maintained my day/night sleep deprived routine.

After a month or all of my house-hunting efforts and my day/night work routine, the kids I stayed with asked me to go stay elsewhere, as the landlord (one of the girl’s father) didn’t want me there.

On the Tuesday, my day routine of distributing night club passes, took me to Chapel Street South Yarra and Greville Street Prahan. I dropped into visit my sister, who worked in that area. She gave me a very hard time, that I hadn’t found anywhere to live.

I then ran into my cousin with her shopping bags of groceries. I was so happy to see a friendly face. I asked her to go get a coffee with me, as my sister had so upset me. When I saw her friendly face, I burst in to tears. When she went to put her groceries in the car and come back to me, the weirdest thing happened.

I got a splitting migraine and plus I peed my pants. What? I know!

Briefly, visited the café to use the toilet, then my cousin gave me a lift back to where I was staying. I made it inside feeling very seedy. I hadn’t eaten all day, other than my spirulina (for breakfast). The toilet was occupied, so I threw up on the carpet. What? Are you not meant to do it there?

Have you ever had a headache so bad you couldn’t make a simple decision not to throw up green spirulina on cream carpet? Yeah! It was that bad.

I made it into the toilet only to collapse on the floor, one of my temporary house-mates actually had to come into the small toilet to lift me and get me out, because I just couldn’t move.

Thankfully, they put me to bed, closed the blinds and turned off the light and with a little instruction from me they rang my mum.

To this day, when the shit hits the fan, I call my mum. Have I mentioned, I love my mum?

Mum was on the road within an hour to come get me. Back then, mum still living in my home town in the North East of Victoria. So it took her three hours to get to me and once I was bundled in the front seat with a bucket (that I don’t remember using) we headed back home for another three hours. I don’t recall having much to say all the way home.

Now, to be clear, at the time we put my migraine down to MSG food poisoning as it was and still to this day, THE WORST MIGRAINE I’VE EVER HAD.

I was bedridden for a week and I didn’t eat. I remember visits to a chiropractor most days and on one visit being muscle tested to work out what I could eat. One morning mum insisted I eat and she bought in some green grapes. Good, right?

Mmmmm, we arrived at the chiropractor’s office, not far from mum’s in time for me to fling open the car door and deliver those grapes onto his driveway. A woman was doing her gardening and commented I really needed to see the chiropractor.

One morning mum insisted I get in the shower, I remember getting into the small shower and just standing there unable to move. Eventually, mum came to help me. Did I mention I love my mum?

During that week, you might wonder whey my mum didn’t take me to a doctor or emergency room? Yu know, those moments when you realise a ‘higher power’ (I refer to it as The Universe looking after me. I have few Catholic types who follow my blog) they will think it was odd but anyway. Every time my mum went to call the hospital or the doctor, they were engaged, so we got the message not to go.

I did notice my head hurt less when I rested it on one side less than the other. Weird right? After a week, I all of a sudden felt a little better, at least good enough to eat something. What did I eat first? I’m such a wog, Salami, then Cabana, OMG I think mum thought I’d be sick, since I’d not eaten for a week.

I remember being very slow to get my energy back, all in all I stayed with mum and my younger sister a whole month. My older sister visited once, insisting I was being lazy and to get my arse back to Melbourne to get a job, so I could find a place to live.

While at home, you might wonder if I heard from any of my club friends, since I would normally be there from opening (10pm) until the end (5am), I was usually out in those days from anything from 2-5 nights a week. One night, I started to my ‘good-byes’ to friends far earlier than normal and one guy asked me if I was dying. I’d had a cold, Ok. Can’t a girl go home early once in a while?

Correct! No one called me while I was sick to ask how I was. Admittedly, it was before the era of everyone having a mobile phone.

Interestingly, the Universe really was looking after me while at the time we thought it was MSG food poisoning, after my diagnosis, when I was thirty-four, one of the specialists I went to, was in Sydney and the young lady (who actually hailed from Melbourne) suggested back when I was twenty-three, I likely had a bleed or a leak from my AVM.

My mother and I agree if I’d been diagnosed back when I was twenty-three, the hospital I was born at in the country, would have had the attitude of ‘No Worries, we can fix that’ and it would have been the worst experience of a guinea pig ever.

Ironically, when I collapsed that day back in Prahan when I was twenty-three, I wasn’t very far from ‘The Alfred Hospital’ which is eventually where I had my radiation treatment. Mum and I both agree that I was diagnosed at the right time, because the early treatment options that were available to me came to the Alfred and was covered by Medicare.

So, all in all, I think I was really lucky and my sister, to this day has no idea how serious it was.

Confession

Confession

Now, this may come as a bit of a surprise and I realise I’ve yet to do the ‘everyday person’s’ explanation of the difference between TBI/ABI/MY ABI/AVM so presuming I can keep it short and sweet (when have I ever).

 

 

 

 

 

 

 

 

 

I’m lucky I’ve not had trauma to my brain, I’ve not been cut into (not my brain anyway). This has allowed me the ability to retain a great many things. Memories from before breakfast today, my greater independence financially and my ability to plan and execute. All to which helps me stay independently living by myself. Kapish (I think that is Italian for ‘understand’)

However, I think all of the above might work against me sometimes, when dealing with (is there a polite word for this? Anyone?)

INCOMPETENCE

Sweet Jesus!

No really, this week I’ve been asked at a train station if I was staff, and a staff member in uniform had just been talking to me and then this incompetent woman came up to me claiming to be doing a ‘survey’. FARK

What? I’ve gotta do your job too now?

I didn’t get enough sleep last night and by the time I left my chiropractor, my left eye was hurting (that’s my version of a migraine these days, hurts like hell, but allows me to keep getting around to do all my “things”) WHERE ARE MY DRUGS? I left asking the receptionist who was on over the weekend. Most good chiro’s if they don’t fix the problem in that visit and you still have symptoms the following day, they will see you again ‘free of charge.’

I was told the two girls (who own the practice) are away for Easter. I enquired who was covering? The Associate? The Associate, is a lovely younger guy I can bond with over “The Walking Dead” and GOT (Game of Thrones) Her reply – “Oh, I don’t know, I haven’t asked him yet.

Do I have to do everything?