NDIS

Published November 28, 2015 by helentastic67

NDIS

Some people are generally concerned the NDIS won’t help them. I have some concerns as for the 8-9 years I’ve had my more severe symptoms of my disability, I’ve been told by everyone I speak to that, the NDIS will help me!

So the NDIS has been like a light at the end of the tunnel. A promise, if you like that things/life will get easier. Because I’ve had no funding, I’ve had to do things that my carers have told me is tragic/sad so I can still enjoy the good things in life.

So, this is a good tip for all those people who have had funding and have been able to be comfortable with life. And who are now looking at having my reality.

The classic cup of tea.

You get 2 teabags and 3 mugs, you heard me!

Your first 2 cups of tea I recommend don’t make them so strong the teaspoon can stand up in and put both teabags into the third mug for your third cup of tea.

If you do it properly the third cup of tea, will be just as good as the two proceeding.

I like my tea strong with a tiny teaspoon of mild so it looks more like coffee, with just a smidge of sugar…

If I plan it just right I have that third cup of tea in the morning when any tea will do and you ain’t so fussy.

For me the little things have been important…

So after years of crappy housemates I prioritize living alone, I prioritize not living so far from the city.

I still prioritize eating, turning the light on and occasionally, I have someone walk into a room and announce that the NDIS won’t help them at all.

So I asked this woman “What do you mean?”

She repeated her first statement like that helped at all…………

God help me!

So I decided to unpack it for her…………

I informed her, she would still get her pension from Centrelink. It would not be one or the other.

Then I questioned her.

“Do you need any carers to live your life?”

“No.”

“Do you need any support?”

“No.”

“You don’t pay rent?”

I’m not sure I asked this but I presume her father doesn’t charge her rent.

“And you work right?”

She said she could work more, but her neuropsych stated she was unable.

And finally I put my old hat on from my days working for the NGO…..

Her next answer surprised me.

“Well I’ve got the investment property in Brunswick.”

To which I informed her the NDIS was not for her!

Confession Time

Published November 28, 2015 by helentastic67

Confession

Confession Time

OK! Something you should know about me. I’m grumpy! I admit it! I get really grumpy! It’s been coming on more and more in recent years. Since acquiring my disability, obviously, but every now and again the “Grumpiness” gets turned up a notch.

I have no patience for whiny – little – bitches. You know the ones, I can’t even watch some reality TV shows anymore.

“It’s too hard!”

“It hurts!”

“It hurts me to move!”

“I can’t wear what I want!”

“Take a deep breath sweetie!”

“Skinny jeans aren’t for everyone!”

I haven’t even tried to put on jeans for about 4 years. Doing jeans up one handed is a pain in the arse! Particularly if you need to get to the toilet in a hurry.

But it’s more a grumpiness because plenty of people with real problems don’t do enough to help themselves and they want everyone to rescue them.

Sometimes, it’s a conscious decision about accepting that I’ve been dealt a shitty situation and I’ve just got to deal with the consequences so how do I do that?

Oh and people don’t like to hear advice from me and when they complain about the same old things I reign in the obvious tips because they didn’t get it the last 3 times I suggested it!

I’m done!

Grumpy rant over!

My Left Arm Doesn’t Work

Published November 28, 2015 by helentastic67

Every day, there’s something new to detest about having a disability. There’s just different ways with how to deal (or not) with how it affects you mentally.

As yet, I haven’t told you what my disability is, I know Soz Bro (my carer gave me this one today) but to give you an idea. My left arm does not work. I’ve lost my eyesight and about 5 shitty things later, I also suffer anxiety and depression. They weren’t first but to be clear they don’t help!

So the situation looks like this, I work on my left arm and hand all the time. All the time, when I’m sitting on the couch, on the tram, lying in bed trying to sleep.

ALL THE TIME! When I’m anxious. I also out of habit use my nails too long so I do my absolute best to trim them so I don’t scratch my good hand while I try to exercise my bad hand…

My carer has recently commented I have very short nail beds on my left hand.

I thought about this overnight and realised sometimes when the beautician files those nails to clean up the mess I’ve created, they hurt and I realise I can feel them…

So this gets to my point – finally. I can’t tell that I’m hurting myself when I trim my own finger nails!

I was a nail biter for my first 34 years! And it’s another story for another day. But my point right now is back then I NEVER BITE MY NAILS SO BADLY I COULDN’T FEEL IT!

2.30am

Published November 28, 2015 by helentastic67

2.30am

There’s a really shitty thing about having a disability, there’s not lots of ‘good things that happen in your life. It’s just more shit things in varying degrees of more shit.

It’s not that I’m always being negative, it’s just really hard to put a positive spin on ‘shit!’

Example; A few weeks ago I had a review for my application for Public Housing. And it seemed that all of a sudden I might not even be eligible because I earn too much! WHAT THE FUDGE???

It seems I earn $12.30 too much per week. I’m not wealthy by any stretch of the imagination. I pay my rent, I pay my bills and I get no funding. I go shopping and while I’m not extravagant I’ve started to do what I call the ‘Povo-shop’ which is to only buy the things on the shopping list and to watch the total at the register with my heart in my throat.

So you can see it’s hard to sugar coat it! It’s hard to put a positive spin on living day to day this way.

And then often friends don’t know how to respond. Trust me, I know it’s horrible, which is why I mostly don’t say anything, but if I say something, I’m not telling you so will offer to fix my problems. I don’t know what would fix my problems.

Please just have some empathy.

It looks like this; don’t say nothing, say something. It might be something really simple like this:

“I’m really sorry, it sucks! I didn’t know it was that bad, let me know if I can do anything…..”

Just so you know, I rarely ask for help, so don’t be afraid I’ll call on you for anything but a chat…

Human Rights

Published November 28, 2015 by helentastic67

Human Rights

Human Rights

There are many examples, I will give where you would imagine, just because I have a disability and because someone collects a wage from a job where they provide a service to those with a disability that you would be treated with respect and provided the services they are entitled to.

I hope my blog over time will express my experience of this sector and that if it is challenging to give a client/patient/customer, what they need then, it’s ok to withhold a service, not delivered a service or just outright bully so you will stop asking.

There are times now, how I’m treated, is outright shocking! And I’m someone who knows what’s going on and how to organise my life and my needs and my services and I dread to think how the people who can’t self-advocate get treated.

I once received a call offering me Public Housing. I know these calls are often met with jubilation and great relief, but I often get a little grumpy and demand “Yes? Where is it?”

Even my friends no longer get excited anymore and demand to be told “Where is it?” On this occasion they building was a new apartment block and the gentleman on the phone after selling me the fact that it was fully functioning, disability friendly bathroom. He told me I couldn’t take my cat!

I am not one to smuggle my fur-baby into my home. People have to know I come with a cat!

I’ve had good house-mates and shitty house-mates. I’ve had shitty boyfriends. Shitty because they are not still here.

I’ve had shitty friends and good friends. All in the last 16 years. They have all come and gone and are no longer here.

The fur-baby is still here!

I often go days without seeing another human being. So my cat is not an optional housemate. I told the gentleman, my cat didn’t cope without me and I didn’t cope without her.

HE TOLD ME TO HAVE HER PUT DOWN!

Now I think you can now tell when I used the term ‘gentleman’ I was being very generous!

Acronyms Part 1

Published November 28, 2015 by helentastic67

Acromyms 1

ACRONYMS! Part 1

In the early naughty (2000’s) I got a job with an NGO. I started as a client, I was a considerably consistent client and then I was a very consistent staff member for 3 years, despite every 3 months being made to apply for my job again. And consistently being passed over so they could give someone else a much needed position, knowing another position would soon be available for me, so I could have some permanency.

On one occasion I was passed over for a job I was already doing and then I was left to be in the office to train that person. Anyway, I’ll let you guess what kind of job/industry it was with this clue.

The industry was rife with ACRONYM’S!

They had then for EVERYTHING!TAF

First, clients were REF (referred) to us.

Here’s some others –

ETS: Expected to start!

P: Placed!

DNS: Did not start!

PR: Participants Report!

Now, this might give you some ideas what industry I was in. If not here’s a few more – when the clients were finished with us. These were other codes such as:-

END: Contract ended

EX/PTW: Exited/Part time work

EX/FTW: Exited/Full time work

EX/RTW: Exited/Return to work

My very favourite exit code was “WUK”

It was a rare one but when it came someone would ask in the office. It was the kind of environment where there was little privacy. But you learnt by osmosis!

WUK: Stands for “Whereabouts Unknown!”

When I started in this job I was an Administrative Assistant, I never understood what it meant to be in “Admin” but basically means you do whatever needs doing.

Later, when the organisation/company (they ran like a company) restructured. I managed to keep a job and was kindly given the title of T.P.O. (Training Placement Officer) which was a job I had long been doing on the Admin salary. But they made me Part Time! Making it very challenging to do a full time job!

I was only paid to do 19 hours a week. I often stayed after the other girls left at 5pm, I would finally do my job, as I was training 2 Admin girls and a TPC (Training Placement Co-ordinator).

On Wednesday, I would arrive at work and announce to the girls, “Get your questions ready and line up at my desk!”

I’ve done the maths and I should be out of here by lunch!”

The papers would ruffle and there was panic in the air. And my boss would come out at midday and ask me to stay.

I would still be there at 4pm.

Apparently if I’d been doing full time hours for 2 weeks, company policy was that full time hours should have been made permanent.

One day I was walking through the Bourke Street Mall in the city of Melbourne. I had received a call from a new recruit back in the office. I kept walking so I could concentrate on training the Admin Assistant now to use a very graph-heavy government database system, it was very “it’s the thing, above the thing and the thing!”

In the end due to a HR issue I was restructured out of my job. Two incompetent women in office claimed I was bullying them. It was actually the other way round.

After I was gone, they soon followed Effectively, I got the shaft!

Unlike others I had no real presence in the industry as I’d always been in the office working.

I eventually found some work with a TAFE, doing the same job and while they all ran around like headless chooks, they had me “culling exited files.” I was under-utilised because they didn’t trust my ability to do a job.

Rather under-utilized. Sadly that job too ended. This was a job I had in my early 30’s for about 4 years. And because it was very stressful, my medical condition started to show, some odd symptoms and I was diagnosed in the same week, I was let go from the 2^nd employer.

That was a really shitty week.

So if you didn’t work out the industry from all those ACRONYMS. I’ll give you one last one to help.

W4D: Work for the dole

CWC: Community Work Co-Ordinator

And around the office we had many nicknames for it “Work for the coffee scroll” being one of them.

I used to think I was good at my job. I was nice to the people who needed it and I laid down the law and was the “hard-ass” to those that needed it! I was the only one in the office who knew how.

There is one big thing this job prepared me for and that was the understanding of ACRONYMS!

Please be prepared for Part 2 to this.

Hell’s Treats

Published November 27, 2015 by helentastic67

Ginger Kisses Hell’s Treats

So, for many years now I’ve made my ‘treats’ and given them away. I’ve done this because it motivated me and giving something yummy to people is a nice thing to do. For about 6 or 7 years I did this every month to some of the ABI groups I go to and to my neighbours where I live so I can introduce myself and they can know who I am and what I’m about.

About 2 years ago I made the decision I could no longer afford to give these treats away and that being generous was making me poor. Sorry poorer (is that even a word?) and I was told I would need to start listing my ingredients and to do a food handling certificate. The first, I said “Hell NO” and the second I said “find me some funding” and that never happened.

I assure you, I come from good CWA (Country Women’s Association) stock.

If you want to risk it, I suggest you get out an Epi pen and train a colleague and give it a try.

I really favour my favour my Ginger Kisses as even one-handed they are easy to make, even if I start the filling late on a Sunday night I can still find the energy at 1am to smash out 3 packets before going to bed.

Please help support my Independence!

Occasionally I’ll make a packet mix and when I do you will forgive me. I’ll not tell you it’s a packet mix, but when I make something from scratch I will definitely tell you.

There is a recipe I like to make that has a difficulty rating 20+.

Because it has many ingredients and they all require careful measuring. Tablespoon of vanilla essence, 1/4 teaspoon bicarb soda or baking powder.

Try doing that one handed!

Yes! ONE HANDED!

And you can get back to me with your grumpy attitude about occasionally smashing out a packet mix. This particular recipe I love to offer people – guess the secret ingredient?

No! Straight out. IT IS NOT POT! MARIJUANA OR MARY JANE. Not my thing, but I imagine if I could afford it I wouldn’t be giving it away.

I’m yet to cost these so that’s going to be a while.

And when I do make a packet mix if asked I will admit, this by muttering it out the corner of my mouth so it’s mostly indistinguishable. Such is my shame.

Hell on Wheels/Life One Handed

Published November 27, 2015 by helentastic67

Hell on wheels

So, you have probably worked out my blog is not like all the other blog’s you have read and you could fairly presume so far it’s a little on the dark side.

So I think I’ll take the time now to explain the title of my blog.

“HELL ON WHEELS/Not my Best!” (changed it to Life One Handed)

To be clear, my blog has nothing to do with the super awesome AMC TV show called Hell on Wheels. Yes! I watch it! It makes my list and I’m happy to report I’m actually up to date.

So Hell on Wheels is a nickname a friend of my sisters gave me about 20 years ago. I don’t know why, but he is the only one who calls me that and I always kind of liked it. About 8 years ago, I developed a disability that “someone” in their intimate wisdom decide to sort me out with a Mobility Scooter. Some might call them a Rascal! I’ve always called mine ‘Hell on Wheels!’

I’m still working getting the “stickers” to go on the Red plastic. Hell yes! I got red! Red things go faster!

Sensitivity

Published November 27, 2015 by helentastic67

Sensitivity

Best advice I can ever want to be a personal carer or anything that requires to go into someone’s home. Go easy on the perfume…

As in “Don’t wear any”

Once had a temp carer arrive at my door to take me shopping? As soon as I opened the door I was assaulted by the bouquet of perfume and cigarettes and I was about to get in a car with that. With the windows up because it was winter. So Help Me GOD!