Let the Games Begin

Published June 25, 2018 by helentastic67

Let the Games Begin

I’ve been sitting and planning this post for about six months. Since I’ve been getting carers through an Agency, funding by the NDIA.

NDIS Carers

Dealing with HR (Human Resources) issues is super “NOT HOT” when getting and keeping good carers. The carers I’ve had the four years from my Council, through to HACC (Home and Community Care) which is state funded. They walk in, they ask “the normal” and they get to it and anything else they might choose to make their little project, when they leave, they might debrief me.

Choosing Carers

“I did the dishes, the stove, the benches, the kitty litter, the bins and xyz” by then, I’m nodding and shooing them out the door saying “I know, I trust you”.

They arrive, they leave, probably a little over the timeframe I am meant to have them but I know I can trust they did more than needed and they leave satisfied they will be happy with what they achieved and my cheek and personality has boosted them to get through the day. Sounds egotistical, but it’s a mutual thing.

Cheeky Personality

This is why despite having sufficient NDIS funding, I haven’t just opened the flood gate to get ‘God Knows’ how many new carers to cover 16 hours every week. I would go mental.

In six months, I’ve lost count how many carers I’ve had, but I’ve blocked three from returning for various reasons. Some have injured me, some we just had a personality clash (to be diplomatic) and some I just outright couldn’t deal with them anymore. There is one I really liked that I think cancer-wise she moved on.

So, there is a common thread that some act like I need them more than they need me because of me having a disability, is a little bit like I’m a commodity for them paying their bills.

Human Commodity

I get it that they do this job because they enjoy it and get some rewards from helping people and nobody would deny they don’t need the money, but I can tell when people work in this industry purely because they see it as a stress-free income.

I can tell when carers vie for my attention, asking coy questions to find out if I have other shifts they can utilise or if a carer must love coming to me because I’m friendly or chatty or (wait for it) YOUNG.

Love the work

I had one lady, I swear she arrived and she was old. I’m not ageist, however her face was very wrinkly and she looked ‘older than God’. She turned out to be younger than Aunty Christine, she has actually aged well. But this other lady, she was jumping up and down telling me all about how young and active she was because she wanted me to want more of her.

Older than God

I can also tell when carers prefer to spend time with clients who are intellectually handicapped, because they think they can do what they want, say what they want and they don’t get held accountable.

Intellectual Disability

It’s also challenging to keep or put boundaries in place because I am so friendly and independent. Who knew either of those things could ever be bad traits?

Bad Traits

So, carers sometimes come and go very quickly. You can have too much of a good carer and you burn out or get over a good thing and not enough of the awesomeness.

In recent years, if I rang my council and managed to get the ‘right’ person who knew my reasons and standards, I would be able to add someone to my ‘blocked list’ without questions.

Carer block list

Now, they require an Incident report and the first one was an embarrassing incident where I suffered a scraping type of injury about an inch above my “Chocolate Starfish”.

I don’t know why, since I generally dry there myself. But when I asked the trusted Aunty Christine, she swore black and blue (oh, how I love her) and that was that. No more ‘older than God’ carers.

Black and blue

The others, it seems to be, they come to work but would clearly prefer to be somewhere else. On their phones, arranging social activities with friends, doing parenting or maybe just filling in time. Since they don’t actually want to find ‘something’ to do. Having carers is a blessing and a hindrance and while I’m all about flexibility, there are limits.

I can’t arrange my needs around their lives, if it’s dark at 5.10pm – (Autumn currently) the washing comes in by then. So, no can’t have you come early at 2.45pm because it’s too early and the shift is at 5.30pm.

So, the games go both ways and I’m usually the one who puts up with more or goes without, which starts to feel like a human rights issue.

Human Rights

Selfish

Published June 1, 2018 by helentastic67

Selfish

I have dilly dallied about writing this post for some time because of the obvious slanderous nature (note title) of the message I want to shine the light on.

Shine a light

There are people who have a disability and they travel, they work, they shop, they enjoy life as a consumer of all good things. Yet, they will bitch, whinge and moan (maybe that should be the title) about how hard they have worked to appear ‘Normal’.

Normal

I know in many ways I appear normal and when I am forced to explain I actually have a brain injury, they are surprised.

I am normal

HellonWheels

Published May 21, 2018 by helentastic67

Hellonwheels

How she came to be? As you may already be aware Hellonwheels was a nickname a friend of my sisters gave me, way back when, even years before I got my license to drive and that wasn’t until my thirties.

Drivers licence

SHUDDUP. I will not take any criticism about how slow I was to learn to drive and get my license. I was a thing and then the other thing and then you will hear about getting it just in time later.

But, today I thought I’d give you the rules and regs of having a mobility scooter.

Rules for Mob Scooter

My process was when I was referred to the council, The City of Yarra a year or two after I developed my disability, it all started to happen.

I was referred to many people to act upon all the things I needed and wasn’t aware of. I thought I’d just start getting carers to help me dry and dress, make my bed and clean my home. An OT (Occupational Therapist) would come out to access how I manage, how I get around, transport etc and she had the brilliant idea to organise a mobility scooter.

Mobility Scooter

Some people just think you go to a shop and buy one and your good to go.

That’s not it at all…

The OT negotiated with my GP, had a copy of all my medical conditions etc. It was deemed I would be safe on a scooter and that the general public would also be safe on the streets and then the man with the van came out from Scooters’ Australia with three scooters.

Test Drive

The first one he told me all about it and I got on and they walked beside me as we did a block on the footpath, we went over some cobbled stones in the guttering, (difficulty rating: some) and along Hoddle Street past my favourite shop there. (It’s called Schotts) Past a laneway, which I did not stop for.

First test drive

Not stop for prompting him to tell me “I just got killed!” Prompting me to tell him cars never come out of there. My left foot drifts out of the footboard, all because of my Drop-foot and if I’m not putting weight on it, it just does what it likes. Back home, the man disappeared into the van and backed out on a second scooter, slightly bigger.

Second test

I got on that one and repeated the ride, being careful not to get myself killed in the same places I’d neglected my basic knowledge of road rules as the first time.

All went well, I can’t recall much about that scooter, it might have been too bouncy or rather big? Big can be a problem when it comes to storing a scooter.

But alas I almost forgot, the man disappeared into the van a third time and came out the biggest scooter. Good to have options and all but I confess I looked at the OT and told her ‘this one must be the big fat Elvis!’

Third test

I think I had a little ‘Go’ on the big fat Elvis, but didn’t bother going around the block like I did with the first one.

Now which to choose?

Choosing scooter

Choosing scooter 1 Choosing scooter 2

Let’s just tell you all the reasons why I chose the first one. It was the smallest, easier to store, the seat comes off, the front handle (part thing) folds down and the scooter (I’m told) fits into my car boot. Except and he rattled off several cars makes and models, so let’s just say most. Probably not a Porsche or Mini Minor or even…. I don’t know.

Mini Minor

My mum has a little Mazda and I don’t even know if it fits in her car boot as we’ve never tried. Point being, if you go to a shopping complex or a day away holiday, you can take Hellonwheels with you. The tyres are solid, so no worrying about flat tyres and I have a satchel on the back.

Mazda

My scooter was the cheapest at $4,000.00. Of which I obviously did not have and she was not at all fazed by this.

The OT got her letter writing hat on and started pounding the pavement to get me funding.

Now, you probably wonder where Hellonwheels lives? When I first got her, I lived in a single storey terrace house opposite Public Housing. I had a small backyard and no cover out the back. Again, no money, again more potential funding.

Shed for scooter

The gate at the front that gave us access was replaced and a power supply was required. The landlord also sorted the power supply in my backyard for the scooter.

Funding was sourced for a shed to go in my backyard. It ended up with the scooter and my gardening supplies. It took up half my backyard and because the clothes line was so loose it was able to stay up and I still had half to use for my washing.

Shed

The shed has been mine to keep, the next house I lived in, the scooter lived under a BBQ cover as there was not enough room for the shed to go up.

Hellonwheels now resides in my scooter shed under the building I moved to 6 months ago, with my gardening things. There is power to the scooter as it needs to be constantly on live power. Not a battery. Every outing on my scooter is a potential adventure. Also, a possibility of a way to engage the community in discussion about disability and hopefully not a chance to need to make a claim on my Insurance. I have up to $10,000 if I injure someone but I’m really not planning to need it. Fingers crossed.

Underground garage

Fat Furniture

Published May 18, 2018 by helentastic67

Fat Furniture

Who loves a good classic piece of furniture? But hates how disability makes us fat. Well, strap in you will love this post.

The early days of my disability I started to get just a tiny little jelly belly, yes, it’s how it starts.

I used to create a diamond shape around my belly button and push together so it resembled the buttons on a Chesterfield couch.

Then I got my disability and I could only do it one handed, not nearly as effective, clearly.

My belly has gotten bigger. Yeah, it’s the only word for it. Bigger, still jelly, but bigger. But there are rare moments I actually appreciate having a belly. I know right?

Last week I departed home on my Hellonwheels and halfway down the street, running late for my local appointment I heard the clown horn on my phone in the satchel bag, on the back of my scooter. Running late, couldn’t stop to check it, have to prioritize and get to where I’m going, then check it.

Around the corner on the High Street, to the pedestrian crossing, press the button for the lights to change and grab phone. The lovely Noelle, start to respond, we have an understanding we text when we can, but when we’re busy we let the other person know we are unavailable.

So, I tucked the phone on the top of my thigh under my belly. Not the safest option for an iPhone, I didn’t pay off on contract. The first and only phone I’ll probably ever get funded, but I don’t have any tummy muscles, so think I’m safe.

So, there you go, a bonus from having a disability.

One Word

Published May 7, 2018 by helentastic67

One Word 2

One Word

You know those things in life, I’ve managed to excel at and what I consider winning at life skills and yesterday I shared a piece of my Helen’s wisdom with my Case Manager over our lunch meeting and he managed to trump me with just one word.

One Word 1

It’s with his permission I share this story with you.

When I moved to my home four years ago, I had plenty (too many) of door-knockers, you know the ones, bible bashers, God bothers and since watching a show a few years back called “The Heart of Dixie” I’ve based how I deal with these situations, based on this particularly great, but grumpy character. In short, the character is the Mayor, he’s a retired sportsman of African American background and he’s seen as a tall black drink of water, so it’s very funny when he greets everyone with a strong and grumpy ‘No’ and he just repeats it. Until whoever is asking something of him, goes away.

Hart of Dixie

So, on a Saturday I’ll open the door in my PJ’s and encounter a sweet young Asian girl or two well dressed, clean faced boys (sorry men) and before they get a word out I start with the “NO!”

Answer door in pj

If the brochure in the hand comes out or they open their mouths, I just repeat “NO, NO, NO, NO!” you get the idea. A good head shake never goes away. Then I step it up by closing the door. Sometimes I’m peeking around the door with “NO, NO, NO” and the head shakes to see if they are still there. Why are they still there? Then I slam the door.

No no no

I must say, I thought I was nailing it, I really did until I met with my Case Manager yesterday and somehow this topic came up, he told me what he does in a word, trumped me. He opens the door, says one word and then slams it!

Ready?

Wondering what the word is?

“GAY!”

Gay

OMG! They win again, I could lie, I guess, but I just thought it was way too good.

Today I re-countered this story to my carer while she thought about it, I suggested I didn’t know if all religions had the same opinion about Gay and Lesbians and told her I didn’t care enough to research it.

Religion

But, I think sometimes life with a disability can be pretty depressing and sometimes it’s these amusing moments that we should share to make it all worthwhile.

Feel free to use either of these methods to dissuade annoying people from pestering you at home.

You’re Welcome.

You're Welcome

Why I Blog

Published January 26, 2018 by helentastic67

Why I Blog 1

Why I Blog?

If you have been wondering with a weird array of randomness, what Hellonwheels is all about? Wait no longer, this is why, here is the answer.

Since my diagnosis in 2007? (I don’t know! It’s been a blur) I’ve met many people with ABI/TBI/general fuckwit-ism and it has led me to query, what means what?

Brain injury

Example;

When I first started going to ABI groups socially, because society loves to put you in contact with people with the “same” issues you have. (Please note eye-roll!) I walked in and young men and old flocked towards me, I felt like a Spice Girl in the mid-90’s. One guy, let’s call him ‘Fred’ (because it’s been a while) made it clear to take me under his wing. We got chatting, as you do and as you do you talk about your life before the ABI.

Spice girls

I mentioned my Club years and that’s always a big topic. But, push came to shove and after a little young woman joined us and I was introduced. Lovely younger lady, also with an ABI. Make mental note; got to be careful or might end up ‘paired-up’ with another numpty like me before long if I’m not careful. I didn’t say this reason/story would be simple so stay with me.

Numty

Totally worth it, Promise.

Over time, I participated in activities at this group and I supported people and they supported me, so all is well. Became friends with Fred and others outside this group. (it’s inevitable: stuff sticks sometimes) Fred had gotten his TBI from pure fuckwitedness (as I like to consider it) his girlfriend was lucky to be alive having been hit by a car crossing the street. But, unlike her boyfriend, she had not had a typical young adult life, like he had, had before his TBI, because she had, had hers at 17 years-old.

Fuckwitedness

He also liked to bond with me because I had been ‘there’ (Clubs/parties) and I remember it. I wasn’t drunk and off my face like nearly everyone else.

Overtime, I became a bit more of a mentor to Fred. I was friendly to his girlfriend, also she was none the wiser. He was also finding excuses to visit socially. FYI: I don’t socialize at 11pm at night, that’s my time.

Mentor

He even had a gay friend drop him over for a coffee one afternoon on a weekend and I was told to ‘look’ after him.

I hope you are getting that he seemed to have told people, I might have been a potential ‘whatever/girlfriend’ when in reality it was always a HELL NO.

Hell No

I decided to discuss this situation with a friend who worked in the industry who was familiar with all of us and our past history etc, her advice to me was.

‘Oh, you should go out with him, because before his ABI, he had four or five girlfriends at a time. Now he’s only got one or two.’

WTF!

Um, I hope you realise, I would not have dated more than one guy at a time before my diagnosis, let alone date a guy who thought he could date more than one woman at a time, I certainly wouldn’t now.

I am also aware I am no longer some Jennifer Hawkins type, now or before my disability, however I’m still not prepared to lower my standards and just accept some broken bit of road kill.

Body

Make mental note: Explain Helen’s definition of Road Kill later.

Road kill

So, back to my point. Yes, apparently it is said, people retain their personality after their ABI/TBI what did I call it? That they had before their (as above).

Personality

Now, this is why I blog.

If I’ve always had my ABI (AVM), have I developed this personality, because of my AVM or despite my AVM?

BAM! There I’ve done it.

WRONG, WRONG, WRONG

Published November 3, 2017 by helentastic67

Wrong

WRONG, WRONG, WRONG

Every time I see some TV personality on TV, talking about when it’s acceptable behaviour to have sex in a public disability toilet, it sends the message that it’s acceptable.

Sex in bathroom

It’s really a culture of anyone who doesn’t have a disability to not use those toilets.

It’s particularly abhorrent to me when I’m trying to get to and use a disability friendly toilet in public, when people are inside it using it for their own selfish gratification.

Self gratification

Hear me when I say, choosing to be celibate doesn’t make me a prude. I just think it’s totally uncool. I mean, really, are you 14? (that being an age of childlike behaviour still) not acceptable, just ‘young’ I mean. GET A ROOM!

Get a room

Review

Published July 21, 2017 by helentastic67

Review time

Review

Because I don’t have enough on my plate! Remember all those things I was advocating? Well, shit just got more real!

Who wants the purest definition of a Permanent Disability? Well, Centrelink, the Government agency that pays my Disability Support Pension. They want to review my pension.

Centrelink

This also requires me to attend a JCA appointment. Sorry another acronym. The worlds in full of them. Job Capacity Assessment.

Firstly, they head up a staircase, I stay at the bottom and say to her (It’s generally a her) I don’t do stairs. She comes back down and we both go up in the lift. It’s like the first test to see if I’m really disabled. One point, Helen, JCA staff – zero.

Stairs

Hopefully they will assess my specialist reports and meet me so I can explain what it’s like just to sit in their office and they will be happy. Permanent is permanent.

Well, as reported recently that Stupidlink did decide I was still eligible for my DSP, it’s just that it took them 18 months to work this out? Maybe not quite that long but it felt that long.

As I like to explain Brain Injury. You can’t unscramble an egg!!!

Unscramble eggs

Irony

Published June 30, 2017 by helentastic67

Irony

I imagine Irony has taken on a whole new meaning since I’ve developed my disability and it’s going to require some explaining so hang tight and buckle in!

Buckle up

HACC Services provide my carers through State Funding. It subsidises the fees so instead of me paying $40.00 per hour, I only pay $2.00. I get a carer 3 – 4 days a week for an hour and on Fridays I have shopping or Homecare, it all starts to add up.

With the roll-out of the NDIS, the council still gets funding from that bucket of money, but because they will be expected to offer more hours to their clients, they would rather utilise that funding in other ways.

Like ‘Tourism’, apparently, I have no idea! Don’t ask!

tourism

That is another point for another day.

I digress, my council also has a DAC! Sorry, another acronym – Disability Advisory Committee.

It is very heavy on council staff, such as ‘Tourism’ and service providers. However, the irony is this: ‘My council loves people like me to go volunteer my time to share my opinion and input so they can better service their community.

A survey I participated in recently, tells me they are far more interested in not offending the LBTG community, than looking after the people with disabilities and when I say that I’m not meaning any disrespect to Gays (love them) Lesbians (Thespians as I like to call them), bi-sexual (yeah, I know, you just love people to work it out and when you decide, let me know), Transgenders.

LGBT

Be brave! Be who you want to be (anyone else has another opinion, you should do what’s right for you and let everyone else do what’s right for them)

Hope I adequately explain my opinion, quickly and succinctly on all those topics!

The bottom line is I don’t have time to give my time for meaningless surveys.

Survey

Mother

Published June 7, 2017 by helentastic67

Mother

How’s your mother? I always get asked by my carers… My mum who was here for less than 24 hours, last week to smash some appointments and things.

My mum is really the only family member to support me and she also manages to be my biggest critic.

So, it’s often somewhat tongue in cheek I reply with a smart mouth “she was alive when she left and so was I”.

Smart mouth

My mum and I have come a long way in the last ten years, in the early days of my disability, she was mid 50’s and she would come down often once a week just to take me across town to my physio and OT appointments.

Mum lives about 3 hours away in the country in a lovely isolated valley where there is NO MOBILE RECEPTION and when I go home for Christmas, mum and my younger sister cannot remember their internet password. So, for me THERE IS ALSO NO INTERNET!

No internet

Admittedly their internet is so little and so slow, it’s better to just let emails pile up. I’m less inclined to lose my mental ‘shit’ and want to kill people.

My internet is fast and reliable at home. My mum reminds me every time she visits when she claims “I just detected 400 emails”.

Fast internet

Yeah! She only visits for my fast internet, I don’t mess around with internet or computers when they don’t work, I have visual images of Jackson Pollack paintings. Anyway, I digress as per usual.

It is rather typical of family members when they are carers for people with brain injuries and disabilities to verbally spar with each other.

Most people with brain injuries I’m sure it’s like torture and torment because they lack the verbal skills or mental capacity to give as good as they get.

My mum probably doesn’t realise she should count herself blessed, I have a smart mouth and deliver her a sharp retort at times, despite it offending her. Because the early years I used to bite my tongue until I realised Passive/Aggressive didn’t help me.

Smart mouth 1