The Worst

Published March 17, 2016 by helentastic67

The worst 3

The Worst!

Think I worked it out!

Haven’t ‘unpacked’ my whole story for you yet, but people often need to compete “my disability is worse than yours……”

I may have mentioned or not, but I always say, all disabilities SUCK!

Just in different ways. And it’s not a competition, but today I found a young lady on the tram in “my seat” and she had a black Labrador tucked in between her legs.

So, the answer is ….. The worst disability is sitting opposite said cute black lab and knowing I can’t pat it!

If you don’t know, the rule is, if a guide dog has it collar on – it’s working and shouldn’t be touched.

And it’s the worst because they are so cute and I just want to hug them and squeeze them and love them!

And I’m a cat-person…

The end…

Christmas!!!

Published March 14, 2016 by helentastic67

Christmas lights 1

Christmas!!!

So our Christmas lights have several settings. My sister the lighting tech support recently described one of the settings as the Epileptic Fit Setting.

I’m really lucky I’ve NEVER had an Epileptic fit!

At least not a Clonic Tonic (Grand Mal) seizure.

I have things that give me a migraine, but no epilepsy. Not complaining……just saying.

I once had an appointment with a room full of Neuro type specialists and they couldn’t believe I’d never had a fit considering the size and location of my AVM.

I told the Doctors I had been to my share of dubs and dance parties back in the day and stared at enough strobe lights.

Consider this as a silver lining.

I’ve never had an epileptic fit!

Held Hostage

Published March 11, 2016 by helentastic67

Ginger Cat 1

Once upon a time our family had a cat which had kittens. There was a Ginger cat which was called “Ginger Biscuit”. It very briefly had a rather wry misname of ‘Crumb’ when Mum baked out of the drive way and it didn’t get out of the way. It sustained a broken leg and after a very expensive trip to the vets, came home with a metal rod in its leg. He survived to sun bath on our concrete for his vitamin D, but alas that’s just background. The temperament of this particular cat was really sweet. I once picked him up and sat with him on the couch. At the start he didn’t much go for my need to sit with him on the couch, so I had to hold him to my chest with both arms. Poor Biscuit didn’t have a chance really, however luckily within 2-4 minutes he was touched in and fast asleep purring…

There is something about having a disability and being taken away from your home where you can maintain some of your own independence that is like being held hostage.

When at home, I can pretty much fend for myself. I don’t leave the house every day of the week if I can help it and I prefer to have the help of a carer on the days I do leave the house, but when I’m out of my comfort zone I have to rely on the volunteer assistance from family or friends. I cannot do my own hair, trim my own fingernails or toenails or dry and dress in a timely manner and endeavour. Eventually, like Ginger Biscuit I just accept fate and take what I can get, make the most of it and go to sleep.

And this plays on the depression.

If you think it’s a 1^st world problem that I can’t do my own mani/pedi, I should be so lucky! My nails are soft these days and bend back causing pain, my left toenails if too long get stubbed and badly damaged. My left fingernails get in the way when I’m trying to exercise that hand and keep my fingers flexible. So, yes? My fingernails are an issue. But if you want a stronger example: try this.

Met a woman from the Barwon District, who had come to tell us of her experiences of the NDIS being piloted in her region.

She was in a wheelchair and probably in her late 40’s – early 50’s. She had a package to provide her carers and as she needed a Carer to go from bed to her wheelchair where she spent her day and to a toilet and back to her chair or bed, you might like to imagine the timing of her carers could be rather critical.

She gave the example that one particular day, she couldn’t wait to go to the toilet and her carer was some hours away, so she rang her service providers to request her carer earlier.

They could not provide it to her.

As she sat in her chair on the stage, she told us she couldn’t wait and in the best of spirits announced to us that when her carer did arrive at the rostered time she would have more of a mess to clean up!

Now, I’ve had some “shitty days!” But she was so brave to announce it to us like that and can you imagine it’s a way some people get held hostage to a situation far from their control…

Social Isolation

Published March 8, 2016 by helentastic67

Social Isolation

Sometimes, I try to socially engage with people wherever I go. I do this at the places I go for appointments or the supermarket for groceries. No lifetime friendships, but connecting all the same because it’s how I encourage people to get to know me and see that I’m “Normal!”

At my local supermarket, my favourite checkout chicks have gotten to know me over the years. Even from before my disability.

On Friday, I encountered a newish guy in the Deli/Freezer area. He was restocking the dairy case with milk.

Now, for those who don’t know – Melbourne has had a heatwave the last few days and being in the freezer section of the supermarket is the place to be.

This is the perfect example of how I try to engage with people and retain my sass!

This guy was wearing a big jacket to wear into the cool room. I asked if that jacket was really necessary in this weather.

He tells me it’s for when he’s in the cool room.

I inquire, “What’s a girl gotta do to get in that cool room? He didn’t really reply.

I grabbed my cream and as I moved away I told him,

“I wasn’t trying to sexually harass him in the work place”

I saw he had a big grin on his face and I did a circular motion towards his smile and told him “I was going for that!”

Old People

Published March 4, 2016 by helentastic67

Old lady

There are many things to love about old people! I know a few amazing older ladies. But I’ll tell you about them another time. But I love when older people ask me about my arm.

Usually, pre-empted with “What have you done to yourself?” to which I reply with – “I refuse to take responsibility for this!…….”

And I offer a brief explanation.

Then I ask them the same question. Today I asked this of a gentleman at a Medical Clinic I was at, who had a walking stick. His wife answered for him.

“He’s just gotten old.”

Priceless. Love that answer because then I can tell them I expected it to take years longer before I felt as old as I feel……

NDIS Rocky Road 3

Published February 29, 2016 by helentastic67

Invisible disability 1

NDIS It’s going to be a rocky road!

I’m giving a shout out to the lovely Monroe who works for my local council in the Aged & Disability service team. And I’m doing so for two reasons.

He has bothered to read my blog!
He is interested in my opinion of the upcoming NDIS.

This is my answer.

Some years ago, I was at a meeting with other leaders and advocates in my sector who were being asked some serious questions about the NDIS. Grassroots stuff.

Questions like, how quickly could people be covered by the NDIS? When they moved to an area/or even came to this country. (Couldn’t fathom they hadn’t worked these ones out without our help, however)

Obviously, they were really concerned people would flock to the pilot regions to get on board early. In Victoria the pilot region has been the Barwon District which is Geelong.

That of course would put more pressure on other services already in place. Service providers, HACC services, public housing, affordable private rental, etc, etc. Service providers have also moved into those area’s to cash-in on the ‘new’ business.

A year and a half later I was at a conference and service providers in attendance were saying the opposite was happening. People were actually relocating out of the area because they had decided “it was too hard!” They did however get to take their “funding” with them.

So I guess, I have many opinions about it already and this is just a start.

I’m going to be bold and say it will succeed and everyone with a disability will be taken care of however I’ll say that it’s been a long time coming and it will take time to perfect.

The changes I’ve noticed over the years leading up to its launch and it’s the level of disability I have now compared to 8 years ago,include the moving around of service providers funding and financial assistance. I suggest that funding I was once able to call on for say, seeing a private dentist of my choice has gone to other areas. And when I get the NDIS I will be choosing to return to those private businesses, rather than going public and wondering about the quality of the services I’m receiving.

I think the government don’t yet know what it will cost to fully implement the NDIS. I think staff, carers, whoever will be the NDIS will end up looking very different to what they think it Is going to look like. It’s going to be, or should be fluid until they get it sorted.

Right now there are many service providers struggling to find and keep their places in the industry because everyone is waiting for the NDIS to “fix all the problems”. No one wants to spend their own money and they expect their clients already in the system to wait for this big bandaid.

I have a great analogy for what this currently looks like on the ground, but it will have to wait. I have been hearing about this miracle the NDIS for about 9 years and it’s been like a white light at the end of the tunnel. And on the downside, I’ve had pretty shitty Case Management who dragged their feet on applying for a Package of Funding from DHS because they said it would never be approved for payment. Therefore, the felt the success rate did not warrant their effort.

You know the answers you get for the questions you never ask? No! So you might as well ask. Is what I say!

Think of all the things you need and just ASK for it! I don’t think they will be advertising all the things that might be covered by the NDIS, because they will be trying to save money. So I will suggest Networking & sharing information is going to be vital. Listen to what other users/consumers are applying for, you might be surprised. If it’s relevant for you apply for it also. And then tell your friends.

Lastly, I think there will be more control for us to choose who provides our services & sometimes competition is a good thing. It means those providers with bad history of poor case management will not survive.

To be continued for sure…

Jamima

Published February 29, 2016 by helentastic67

Jamima

Meet Jamima ‘Patch the Pirate Cat’ Puddleduck!
So called for my patchy left eye & my pen chance for sitting on shoulders(until Uncle B comes along, his shoulder h helps me get higher)
I’m the mental Healthcare Provider for a Crazy Cat-Lady. Housemates, boyfriends & even Uncle B have come & gone but my Mum keeps up with the Tuesday Tummy Rub’s!

Stay Tuned……….

Things to Miss: Fred!

Published February 19, 2016 by helentastic67

Things to miss 3

There are many things I miss from the era before I developed my disability and I’m not referring to the stuff you would miss because you can no longer do them, because sooner or later you can’t go clubbing all night and not feel like crap the next day even if you don’t drink. That shit happens because you have gotten older and I miss feeling like a valued member of society. I miss intellectual conversations with people.

Once upon a time, I worked for an N.G.O. as I will have mentioned and a supervisor came to me with a problem. I gave him the answer, he didn’t want. That was “NO!” Then he had a follow up question to circumvent the first answer. To which he got a further answer of “Yes, but NO!” then for safe keeping I answered his next 4 questions; something like this “Yes, no, no, no, yes, no!” I know I could tell you the scenario to help you better understand and while it was 10 years ago, I no-longer recall the clients name but let’s call him Fred!(was definitely not Fred) but recall the situation perfectly, it’s not going to help you to bore you with all the details.

His response to my answers was “What was that for?” And I told him they were the answers to his next 4 questions because I knew exactly where he was going with his line of questioning. The moral of the story was Fred had been lax in starting his obligation. He could not come back as a new referral for the outstanding hours he had missed before his contract ended. He could come back for a whole new obligation before he would be eligible for the allocated funding to go toward studies & further training. Hope you can tell from this that I knew my stuff, despite the terminology I’ve just used. (Obligation/contract,etc)

I do miss those days. I miss having people respect my knowledge and think to ask me for my wisdom.

FYI: My mum hates it when I do this even though I think it slightly amuses her…That is to predict her questions and answer them before she has had a chance to ask.

Piss or Blood

Published January 29, 2016 by helentastic67

Piss or Blood

I recently, (again!) had another handover from one Case Manager to another.

She was a good Case Manager, but she had been dragging her feet a little on my “goals” and it became obvious when there was a ‘new’ Case Manger and that she had been looking for work closer to home because she had a young daughter in Day care and she traveled an hour or so daily to get into Melbourne…

I’m quite over the process of getting a new Case Manager. I like to befriend them so they better understand who I am and what I’m about, so they can appreciate how much I do for myself and the importance of what I do actually ask of them. I like to treat them like my friends because I do want the best from them.

Anyway, I digress – On the last meeting the outgoing Case Manager was busy checking her phone.

She explained, she was concerned for a call from their Day care provider.

And she used the term ‘Piss or Blood!’

I look at my new Case Manager, a young fellow whom I like already. He refers to me as his favourite client, so he gets a K.P.I. ‘tick’ already.

This “Piss or Blood” comment needed explaining, so it goes like this:

If she gets a call and her daughter has had an “accident” that requires a change of underwear in the scheme of things it’s not a big thing. If there’s blood, that’s more worrying. But this is not yet the point.

So, there was once a time I would speak to my mum every day.

I don’t have family close by and I live alone. When I didn’t live alone, my housemates did my head ‘in’ and despite the extra expense of living alone, the upside to living alone are many…. To be continued.

I now only call home if I want or need something or something has gone particularly badly and I need some reassurance of how to fix it, because by that stage maybe simple decisions are beyond me.

But that doesn’t mean I get a timely response. If I call, text, email, please don’t ignore me. I shouldn’t need to tell you why for you to prioritize how swiftly to respond. Just do.

If I’m having a really shitty day with my mental health, I may not call you. I may send a cheeky emoji to a person not remotely related to me because they will respond and I won’t feel like I’m going through the “Blood” alone and no one cares.

It’s a really ordinary feeling to feel you are alone in the world.

Original Helen/New Helen

Published January 18, 2016 by helentastic67

old & new Helen

Original Helen/New Helen

Once upon a time, Helen worked in clubs! Actually it was all of my 20’s! And when I say ‘worked’ I mean I kept myself busy for drink cards, CD’s and pocket money.

I guess my 20’s was an era I had started discovering great music, friendly people and a way to go out and have fun and I had an excuse to break through the shyness.

Hear me when I say I was the most clean living person there! With the possible exception of eating meat and wearing leather! I barely drank, didn’t smoke and didn’t do drugs!

And really, your 20’s. I was still working out what I wanted to be when I grew up. I still am…

But I do like to be busy…

So, once upon a time, one of my promoters came up to me telling me his very pretty female friends were being ‘hit!’ By some seriously drunk guy!

I poised on the “suggestion” to security to remove this offensive human being. The security guy looked at me like what was he supposed to do about it?

Frustrated I let the situation ride for a little.

My promoter again reported the offensive behaviour was continuing…

Lesson #1 Here is; “sometimes the best fuck off line in a club is “FUCK OFF!” I’m just saying…

Lesson #2 I took care of my people and sometimes I did so rather, creatively because I looked after my people for the enjoyment of all our regulars and I suspect the people I worked for might have been a little grumpy about what I did, I imagine they were happy they got their cover charge and he was so drunk and he probably shouldn’t have been let in or served further alcohol…

So, here’s what I did;

I went up to this guy and said ‘hello’ I’m pretty sure I introduced myself and definitely certain he would not remember it because he was smashed… He spoke to me and I could barely understand a word he said. I took his hand and asked if he was there with friends or had a bag or jacket with him? He kept mumbling the same thing.

Finally worked out what he said “Hi! My name’s Simon! I just want to be with you!”

I took him by the hand and led him down the stairs.

Occasionally he tugged at my hand and I looked back to work out what was keeping him…

There were 4 flights of stairs. He kept stopping to chug back a beer…

WTF Simon! What good would he have been to me anyway?

Once down on the ground floor I walked him to the door. At the top of the last 3 steps the new security guy stood looking up at me….

I told Simon to go down the steps and wait.

What? He was too drunk to know I wasn’t going to follow…. And didn’t…

The security took his drink off him as is the law. The club exited onto an alley way off a laneway…

I told the security guy not to let him back in. Simon apparently returned several times with discarded bank ATM receipts and all kinds of rubbish try to get back in…

The following Friday night I worked reception for a different crowd and the same security guy was on.

He gave me the best compliment I have ever received!

He told me “That’s what clubs need. Some hot chick who just takes guys by the hand and walk them out.”

I was so underpaid at that job!

And despite it being a great story when you go for a ‘real job’ interview this is not the kind of story they want to hear, when giving an example of when you ‘took initiative’ at work. To which I never did.

Stay tuned for more stories about Original Helen!