Today’s Lunch – 10th October 2018

Published October 10, 2018 by helentastic67

Todays Lunch

Today’s Lunch

Good Mental Health Day

People often think people with disabilities don’t have a sense of humour, they would be wrong. Made the best disability joke yesterday and only two people were there to witness it. I was at Ross House where the self-advocacy group, I go to is located. All the resident organisations are not for profit (NGO’s) The lift is old and small and slow, there are stairs. I’ve never used them. There are four floors and with my young carer who normally escorts me shopping and cooking on Fridays in the lift and a complete stranger, the lift seemed to stop every floor on the way down yet there was no one there to get on the lift. I muttered to my carer as to why the lift kept stopping without anyone joining us? “Someone probably pressed the button and they got sick of waiting and took the stairs but, I can guarantee you it’s not someone in a wheelchair!” Yeah, I went there.

Disability humour

Wednesday has started a bit differently. No water in the whole apartment complex until after 1pm so lunch will be after my only appointment and I think it’s about time I put a myth to rest, I wrote in an earlier post how I dislike the “Like”. It may have been taken out of context. I love the “Like” I have only two ways to tell if people read or like my posts. I know it sounds needy, however, hit me with a “Like and comment” I need to be validated too. Oh, yeah! I just hit 200 followers. I know, it’s not that many to some of you. I still get excited by every single one. I go check out what you have to write about and hit you up with a “Like” so you know I dropped by. If you write about something I’m interested in or feel I can support you I will follow you also.

Like

Eventually I got out on Hellonwheels to get to my only appointment, which was to get stabbed, that being acupuncture. In true Melbourne style it’s spring. So, t-shirt weather if you are lucky to be in the sun but not catching the wind. I couldn’t wait to get home to put on some warmer clothes. I stopped to collect a little cannoli and a French donut (it’s got custard in it) and stop at the post office.

French donut

No photos today. But I can show you some cute toys I bought Mika last Friday. You have already shown more interest in her new toys by reading this. Except, well I think I don’t need to describe what obviously happened here.

Mika toys

Need more coffee, much more coffee! Medicine!

Coffee

Land of Funding

Published October 8, 2018 by helentastic67

Land of funding

Land of Funding

People may wonder how I’ve had my disability for 12 years, yet have not qualified for funding before the NDIS kicked in a few years ago.

NDIS is coming

Well, if I were to do it justice, I could write a book or this blog would be about nothing but ‘how the system failed me.’ But however, I don’t want to issue you all with warnings to go hide your razor blades or pills or any other dangerous self-harming implements’ (in America I guess that includes guns!)

Self Harm

So, allow me to do an abridged version. Ok, I’ll try.

If I was diagnosed early, say under twenty years of age, bingo. There would be FUNDING.

Under 20

If I was a mangled ‘thing’ in a nursing home under forty years old. BIG FUNDING.

Under 40

If I’d been in a car accident, even if I was off my face on drugs and smashed (drunk), I’d have TAC funding.

Car accident

That and all of the above means, I might not even need carers, I might be able to drive still, but I would have so much money I could get new computers, smart phones, iPads, Playstations (is that the gadget these days?) every other year and no one would stop me.

new equipment

However, I had to do it the hard way. When do I not?

After my treatment and the ‘fall-out’ that gave me my disability. Maybe because I was maintaining life independently and didn’t spend time as an inpatient in rehab, learning how to walk and talk (not complaining. Just stating facts) I started ringing around to see how this world I now had to navigate worked.

Navigate the new world 1

I rang DHS (Department of Human Services) they do Case Management, but are so overrun, they outsourced to other agencies and businesses that they then find.

DHS

I was given two names that I followed up. The first sounded reliable, but had a huge waiting list. I rode them like a kid on a bicycle. I rang so much staff turned over and eventually I was given short-term Case Management to achieve some goals.

I’m sure I mentioned how GOAL AND OUTCOME DRIVEN the land of funding is.

Goal and Outcome

Because apparently, anything less is not worth doing. Please not sarcasm.

I digress. I have dealt with two different Case Management companies (they say they are organisations but they work on a business model “to make money”) so they are companies.

Make money

The first I had an Advocate and made a complaint to the Disability Commissioners office. Case Management companies literally can sign you up, give you the ‘YES, YES, YES’ go back to the office and never speak to you again.

Yes

Both companies always said “YES, YES, YES” we will do an application for an ISP (Individual Support Package) and it never fucking happened. One company gave me the excuse that they are rarely fucked. It’s not good enough reason not to do one though is it?

I really could go on and on about this topic and Helen’s lack thereof, but it is likely almost enough now.

I guess also that the system failed me because while there were whispers of the impending upcoming NDIS, everyone thought it would solve my problems. It was painted as a light at the end of a very dark tunnel. So, everyone let me wait.

Problem solver

So, I’ve struggled, I’ve had to move house four times since my diagnosis, not always because next was outrageously high or lack of decent housemates not wanting to deal with shitty, stressful housemate drama anymore or even that I’ve used every dollar I had on renting and much from my father and lastly is the constant reminder from others, who don’t have any money issues or funding issues, trying to give me their opinions on the thing, the thing, the thing and the thing, when they really know not a God damn thing about it.

Dad money

Advocacy

Published October 5, 2018 by helentastic67

Advocacy

Someone gave me the most brilliant analogy for advocacy and the success felt when achieving anything major.

Advocacy success

For example, I’m currently wearing my new shoes and have been for about a month. The shoes are referred to as Custom, not custom by NDIS.

New Shoes

They weren’t made by hand to specifically fit my feet, but you get fitted in the shop and there are layers in the bottom of the shoe that come out to make room for my AFO (Ankle, Foot Orthotics) and the overall effect is, I can walk better, my AFO does what it’s designed to do, my hips won’t be uneven and the most important thing is, I won’t need a knee replacement one day, because I have a habit of hyper-extending my knee.

AFO 1

The shoes actually come from the States (as in America) and are the most expensive shoes I’ve ever owned. They are not yet PAID FOR.

Expensive shoes

I know, sounds ridiculous that I’m currently wearing $350.00 pair of shoes that weren’t paid for by the NDIA (National Disability Insurance Agency – who manage and deliver the scheme)

NDIS

So, the analogy I was given (no, I didn’t forget) was that Advocacy is like trying to climb Mount Everest. Then her advice was to stay at Base Camp. I suggested that was likely wise, since the air is thicker there.

Mt Everest

When Disability Becomes Embarrassing – Part 4

Published September 28, 2018 by helentastic67

When disability becomes embarrassing 4

When Disability Becomes Embarrassing – Part 4

Fred Gets Taught a Lesson

The final day of the conference everyone was tired, but content they had gone, conquered and achieved what they had gone there to do.

End of conference

I came across Fred and in a casual setting he approached me to apologise for the previous night at the dinner and throwing me under the bus in front of everyone.

Fred apologizes

I told him “It’s OK, because I had been about to tell him to go outside and call all his friends and family and loved ones and tell them how much he loved them!” because I was going to kill him.

Im going to kill you

He seemed to sober immediately and to confirm he wouldn’t do it again. I told him it would be OK because I could always claim brain injury to “get off”.

Blame brain injury

I left him with a friendly pat on the side of his arm, but I think he also knew not to do it again. It should be a warning to others.

Dont mess with me

DO NOT MESS WITH HELEN.

Yet to kill anybody, but there’s always the first.

Always a first time

Today’s Lunch – 26th September 2018

Published September 26, 2018 by helentastic67

Todays Lunch

Today’s Lunch

Good Mental Health Day!

Life has been way too chaotic lately. What is going on? Is it just me?

Chaotic

Last Thursday, my young carer and I went over to the west. My artist friend Larissa had organised a huge Fringe event called Disability Pride. Here is a little taste. You can see photos of the event on my Facebook page. https://www.facebook.com/helen.caligiuri

Disability Pride 1

Disability Pride 2

And if you can share the posts already on fb for this event. I’m still struggling to share to that page. I’m doing it wrong, obviously. https://www.facebook.com/larissa.macfarlane

Disability Pride

And like my sleep isn’t challenged enough? Enter this scenario. Late Monday night far, far away in the country. My mum chases in Two cats (One likes to stay out later than the other prompting me to tie them together.) I can’t believe she bothered to tell me why she couldn’t do that. Then she drove to Melbourne (3.5 hours) to arrive at 2.10am, I was in bed around 3am and my younger sister was returning from her first overseas trip. I woke at 7.30am, to wonder where they both were? I had expected to wake to an extra body snuggled down asleep in my bed. Did I need to give her intensive border control training? Doubtful. Getting luggage took for ever apparently. So overall, four hours sleep. Not good at all.

Sleep

My one appointment Tuesday was cancelled without anyone bothering to tell me so after my family departed I had a kip and I finished the day with a friend coming for dinner and a film. I had managed to convince my friend Susanne (her real name) to watch Deadpool with me.

Forgive the irony, I told her she could hit me if it was too violent. I forget, I find the violence so highly stylised and the humour for me wiped my memory of the violence. I gotta hand d it to her, the moments she closed her eyes and blocked her ears, I stroked her leg (more of a pat) and told her “butterfly kisses!” And reminding her of Ryan Reynolds rack, eighteen minutes from the end she waved the white flag, she had, had enough and I didn’t get my slap.

Deadpool

It’s now very early Wednesday morning as I tap out this blog and another crazy day is ahead.

Crazy day

So, today’s lunch, Spanakopita with a side-salad and medicine. Nom! Nom!

Spanakopita

Latte

Cheers

H

Happy Wednesday

When Disability Becomes Embarrassing – Part 3

Published September 24, 2018 by helentastic67

When Disability become Embarrassing 3

When Disability Becomes Embarrassing – Part 3

Stacey

The following day, I went looking for a particular speaker and topic at the conference, that others in my group were looking for.

It was something about “sex after ABI” for example. I find the right room and joined some fellow guys I already knew. This won’t be awkward right? Since he had given me his business card, the night before.

Sex after ABI

The guys I knew and I looked around thinking we were in the wrong place because it seemed everybody else in there were “industry-types” service providers, whatever.

Industry Types

Then in came the presenter.

That’s right, Stacey!

She started by recognising there were more industry-types there than she expected. I suspect she had wanted to empower people with ABI’s that sex could still be a natural part of life post ABI.

Sex is natural

Here’s an example:

Stacey2 (not related to Stacey) had, had a stroke. She had her stroke while having sex (a little rumpy, humpy) with her husband.

Stroke during sex

There was a moment of sadness in the room when we heard this. Apparently, the married couple had a very healthy sex life before the stroke.

Healthy Sex Life

So, when in hospital, when she was able to get up and move around, they attempted to have sex in the hospital.

Sex in the hospital

Must put this one on the bucket list.

Bucket List

We were made to understand it was perfectly normal and for them vitally important to be able to continue and maintain a normal sex life for them as part of her rehab and existence.

Sex in Rehab

You might ask how they did this?

Stacey informed us they did it standing in the bathroom with her holding onto the handrails. And success apparently.

Sex in the Bathroom

Now, Stacey 1, asked us a question. She asked us, what happens when we reach climax? (or orgasm). The room was dead silent.

What happens when you orgasm

I piped up,

“What? Your muscles tighten?”

Stacey was impressed and said I was correct. The industry-type people checked me out wondering how I knew.

How do you know

Exactly!

So, I struggled a little and said,

“It’s been a while, but……”

It's been a while

The following day, at the end I walked Stacey out because I had enjoyed spending time with someone ‘normal’ as you do surrounded by numpties all the time. She thanked me for being her “Conference Friend” Sad face…

Sad face

Stay tuned for the lesson I gave Fred.

When Disability Becomes Embarrassing – Part 1

Published September 17, 2018 by helentastic67

When Disability Becomes Embarrassing

When Disability Becomes Embarrassing – Part 1

There are many times my disability has been embarrassing or humiliating. However, this is one of those occasions where I was standing in front of a large room of people with a microphone shoved into my hand and all I could think was – “FARRRRKKKK” (you will forgive me for that shortly)

Microphone in hand

Then I was thinking, rather swiftly I might add. “What just happened? Who did that? Where did they go? Help! Now what? How do I get myself out of this situation?”

What just happened

Now, to back up a second, I will put this situation into perspective. I was in Bendigo a few years ago at the ABIAW (Again: Acquired Brain Injury Awareness) week event. I had travelled to Bendigo from Melbourne with my mum, who had driven three and half hours to get to Melbourne, so she could carpool others around also from the ABI Group in Melbourne, I was part of.

Carpooling

So, mum was there also and we shared a room in the hotel we all stayed at.

The first day was a long one, lack of sleep and we went to sessions and heard people speak, we mingled, we ate, we collectively drank bad coffee and the first night we gathered at a dinner to mingle and socialize.

Mingle and Socialize

Now, mum and I retired to our room, like many others for a break before we went to the location for the dinner. Needless to say, my mum and I are both on a different page when it comes to tiredness.

Stubborn

I like to be early to be on time. My mum is much more lenient and we are both very stubborn on this.

By the time we arrived, the people we knew there from our group in Melbourne were spread over two big tables and there were NO SPARE SEATS and no one had thought to save us any.

Crowded table

The guy upon entering, suggested we could join another table to make some friends or sit at another empty table on one side and that table would likely fill up soon enough.

Single Girls Table

I dubbed it the single ‘girls table’. Oh, hell why not?

Here’s where mum and I differ. I was completely okay sitting there out in the bitter lonely cold, but mum wanted to join another table. Soon enough a younger ‘normal’ woman joined us and I enquired if she was single or not.

Matchmaker

Sometimes, I can be such a Nona. Nona’s very prone to want to match you up with someone’s son/nephew, whoever.

She claimed to be single (turns out that was a lie), she soon decided to find secure and encourage us to abandon our single girls table and join another table with conveniently three empty seats. This table was front and centre.

Front Row Seats

I had already had a comment about the man facilitating and Master of Ceremonies. While it wasn’t bordering on sexual harassment, it might have been a bit wrong.

Master of Ceremonies

“Let’s give single girl a name, Stacey and let’s call him Fred. Again, Fred gets such a bashing, doesn’t he? So, Stacey spoke to Fred and as she returned to her seat Fred came up to me and…

Deep Breath 2

Wait… Deep breathe,

Deep Breath

He announced to the room there were single ladies at the front table and were there any men looking?

To be continued

To Be Continued

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