Family – Part 2

Published March 13, 2017 by helentastic67

Family Pt 2

Family Part 2

I’ve been procrastinating this topic, because it’s not an easy topic to cover. I don’t know how other bloggers deal with this however, maybe I should be able to say what I like and if family can’t cope, they can start their own blog. However, what generally would happen would be that any assistance I currently have from family would quickly dry up.

We like to imagine that if someone is sick, has a disability or is dying (I’m not dying in case you’re wondering) empathy would kick in and any other ‘issues’ you have had with that person or family member, you would be the bigger person and put it aside, get over it or just move one.

I luckily, have both parents still on this plain, they are 66 and 67 which is younger than most of my friend’s parents. And they have not been together for the last twenty years.

I also have two surviving siblings. My family was rocked by severe grief when I was only 9 years old, when a younger sister died from cancer.

People don’t know how to deal with grief, so they stay away. Apparently ignoring a situation that makes people uncomfortable, makes it easier. So, our family pulled through and when I was a month shy of my 16^th birthday there was another baby in the house.

There I was at 16, a full-time student, working a supermarket job, 15 hours a week (Yes! I was a checkout chick) and changing nappies and babysitting. And preparing (like there was any time) to spread my wings to move to study.

I should point out over Christmas, I had several jobs to help save for College.

This sister is now 28 and living back at home with my mum in the country.

It’s hard to bond with this sister as she has been raised by mum only from the age of 7 and while she moved out of home to study for a few years, she’s now back at home, working and saving for the things in your 20’s. Like travel.

I attempted to bond with her over GOT (Game of Thrones).

Game of Thrones

She watched the 1^st season and decided she wanted to read the books, then mum decided to read the books before they would watch it together. And I’m out…

My older sister actually lives closest to me, about an hour away and I see her less than 5 times a year.

She and I lived together twice in my 20’s and to say it didn’t go well, would be an understatement. Other than I didn’t get a real job, I’m not completely sure what I did wrong to offend her, but when we are together, it’s hard…

Sisters

Where Was I?

Published February 24, 2017 by helentastic67

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Where Was I?

I gather you have noticed my departure from my main message, which was to educate about ABI (Acquired Brain Injury) and disability. There has been a perfectly sound reason for that. And that is two things, if it were to be all about being popular, brain injury/disability is not popular!

education

Brain injury and disability and these 2 things for which I qualify will never make me a million dollars. I will try to prove that statement somewhat incorrect because as I see it, I need at least a million to afford a home in a suburb I would like to live in. I live to prove people wrong – You Know It!

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And because ABI/Disability are not Sexy!

I’ve had several ‘lives’ in terms of my ‘Poor Art Student’ years, then the poor but busy and happy club years, then my “Oh My God” Real money admin years when I’d go home and be happy to not pick up a phone era. And mostly people think I’m only banging on about brain injury now because I have one!

To this I say, “FUCK YOU!” At least I have what I’m selling…

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And number two! When I was about 8 or 9, I did the MS Readathon like many Aussie kids. I have never had MS, I’ve never been diagnosed with MS! MS is that “thing” I like to suggest is worse than ‘my’ ABI. Apart from all the other ABI’s that seem worse than mine. I know, don’t ask me to grade a crappier ‘ABI’ than what I have…

I would suggest having most my independence, lost my ability to manage my own money, pay my bills, speak for myself (ever) that would SUCK!

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So, for a while, I’ll return to my original aim of educating people about ABI.

I’m not going to tell you an ABI can easily be avoided. Some can, come can’t.

If I told you to not drink or smoke, and you could avoid a stroke, that would be a lie.

Do I suggest never getting in a car or on a motorbike and therefore you can avoid a TBI? (Traumatic Brain Injury), apart from it’s too late, it’s very unrealistic.

You won’t get hit by a bus if your never leave the house, but you can die just as likely by not leaving the house.

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You are damned if you do and damned if you don’t.

If you want further information about ABI/TBI, this is not the right blog for you. Luckily, there is someone who does that already, does the appropriate research and you can find his blog here www.brilliantminds.com

I, on the other hand do simple stuff about ABI for the common person.

Brain Injury – bad!
Not all brain injuries are avoidable.
Every ABI/TBI is different. Not all ABI’s get funding.

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The Good, The Bad

Published December 26, 2016 by helentastic67

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The Good/The Bad

There is a children’s book I recall reading as a child. I can’t at all remember what it was called but the story line and message stuck with me. It is literally a story about a little boy who gets into an aeroplane and flies up into the sky, then the aeroplane runs out of fuel. He flies it upside down and he falls out. And he falls out of the aeroplane and he falls in the direction of a haystack. But the haystack has a pitchfork sticking up in it. But it’s OK because he misses the pitchfork, but he misses the haystack also. But it’s all okay! Because he lands in a pond.

aeroplane

The message is obviously to teach the young impressionable minded reader that life is good and bad in equal measures.

Sometimes, it feels like only bad things happen and not enough good. In recent years, I’ve developed a disability, on the upside, I’ve maintained my ability to speak for myself (when people listen) and I can manage my own finances. I might not be rich, but I’m not starving and I’ve kept a roof over my head.

Sometimes, the good isn’t completely blow you away, amazing it’s little things. But those little things all add up to.

Here are a few good things;

Winter in my house is a little brutal, however I can keep the butter on the bench and it doesn’t melt or go mouldy.
I am not reliant on a man in my life! I might be single however, I’m not bad at being single. I can survive without a male presence in my life.

ONWARDS…

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The Fall

Published October 30, 2016 by helentastic67

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The Fall

Several years after developing my disability, I had a fall on the front veranda of my home. Unless, you’re a stunt man or woman there is never a ‘good’ fall. When you have a disability, there are only ‘bad’ falls. Falls in general, is one of those things that Doctors, will ask about to gauge your ability to be mobile and therefore independent. Those kinds of powers and abilities is in simple terms about getting to the toilet and moving around inside your home, not just about if you can leave your home and go to appointments and do things.

So, this particular fall I caught my left foot on a metal bar that protrudes from the fence at the front of the Terrace House I lived in at the time. The post was designed to stabilize the fence.

And this is when I fell, I managed to land hitting the left front of my head and my left shoulder. To say it was unexpected is an understatement. And that brick wall was hard. LUCKILY, there was no blood or piss for that matter however, I cannot tell you how much it hurt!

I actually whimpered. My mum was staying at the time and was 3 rooms away. By the time I got up using the fence for support mum was there. Of course, she scolded me with that usual ‘What the hell did you do?’

Yeah, but she was genuinely concerned. Of course, never mistake it!

As I had gotten up I had looked out across the street to see if anyone had witnessed my spill.

At the time, I lived opposite some low-level Public Housing.

A guy who lived on the ground floor who, saw me fall and I knew and waved ‘Hello’ to as he was always on his front balcony smoking and generally keeping an eye on the neighbourhood. He had gotten up with a concerned look on his face.

When he saw my mum, I gave him a wave to let him know I was OK.

Again, don’t ask me to define OK.

FYI, if you think that neighbourhood watch dog was a nice guy, think again! He broke his cats neck because (his neighbour told me) he thought the cat was listening to his conversations.

He did have Schizophrenia. But there is no excuse for killing an animal. And people wonder why I try so hard to stay out of Public Housing.

What remains of any good mental headspace would quickly vanish surrounded by that.

Anyway, back to the fall. Really don’t know what it did to my noggin. We queried my Doctor at the time if my brain had received any damage, however an MRI taken at the time were only aimed at the AVM site. (The opposite side of my head)

bandaged-head

My left shoulder on the other hand remains a problem to this day. In so many ways including a constant and repetitive disagreement with my Mother. Did I dislocate my left shoulder, or didn’t I?

Had I hit my right shoulder, it would have become dislocated! Without doubt!

Because my left arm doesn’t work, my shoulder has reduced muscle tone. When I hit, the brick wall my muscles in my shoulder just stretched like an old rubber band and the bones just moved.

After some time, I did go to an emergency room and get it x-rayed.

Officially, it’s dislocated but NOT!

drs-office

I did pay ‘out-of-pocket’ to see a private shoulder specialist. Partly to see how bad it really was and part to alleviate my mum’s stress. Yes, that’s what you do in these circumstances.

I distinctly remember meeting the specialist. Because he mostly saw sporting injuries and his opening question to me was ‘Now, what’s wrong with you?’

“How long have you got?” is how I responded. I of course gave him the brief rundown of my medical situation and disability.

He told me he could fuse my shoulder together which would guarantee it would never work again, but would put the arm bone (note – very simple terms) back into the shoulder socket but he told me it would lead to secondary issues across my upper back.

Still, many years later, I wear my arm in a collar and cuff when out of the house so I’m not carrying around dead weight and putting more stress on my shoulder.

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If I sleep on that side, my shoulder clicks when I sit up in the morning. Sexy right?

Not to mention the pins and needles I get in my good hand.

This is a new/old thing I’m currently looking into. One thing worse than being one-handed, would be having 2 arms and legs and not being able to use either arms or legs.

Not wanting to give ‘power-to-words’ Let’s move on!

First World Problem

Published September 19, 2016 by helentastic67

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First World Problems

You ask anyone with a disability what they encounter on a day to day basis, they will take most things in their stride after a while.

Early last year, someone I knew was banging-on Social Media about having some elective surgery to a sports injury (OK, elective is debatable).

sports-injury

But, he had surgery, a short stint in hospital, then inpatient rehab for a few weeks, then home to continue rehab as an out-patient with a boot, what-not.

Where normal life of work, study, family would continue pretty close to normal.

Really, what annoyed me about this was he really wanted sympathy and I didn’t have it for him because at the same time I was upstairs in the same rehab facility.

And in my room of 4 beds, I was the Neuro (Neurology) patient in the room. And I was there because I’d had Botox in my calf and my leg put in a cast!

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Have you ever heard of such a thing?

And no, Botox. Not just for young and old to make them look younger!

I will explain Botox in my next post.

Guess, I’m writing that one now too!

VATT/Commodity!

Published September 16, 2016 by helentastic67

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VATT!/Commodity!

Seriously, I didn’t make up this acronym! It stands for Voice At the Table Training. For which I’ve only been able to attend 2 of the 6 days. Don’t worry, people’s lives will not be at risk for not attending the other 4 days and there is no competency needed. The training is about how to be a useful “voice” when on an Executive Committee or a member of a board and NOT A TOKEN MEMBER!

I find I have great idea’s but no one wants to hear them. Anyway, more of that another day.

vatt-1

More important points to make right now. While at this training I was informed an American company (who shall remain unnamed because conveniently I can’t remember) is going to be getting in on making money from the NDIS and offering services etc, in Australia.

This company currently runs Prisons and Detention Centres in the States.

prison

WHAT THE FUCK!

Sorry, had to swear! You have to give me that one!

Can they get their current businesses running properly first?
Why are foreign businesses tendering for our services?

And then I recall Australian Government has already sold off land to foreign countries to grow crops!

And then (not in this order) they sold Australian Government owned companies like Telstra!

Yeah! That’s really paying off now isn’t it?

Which government party do we blame that on? I don’t know enough about Australian political parties to continue really.

So in the middle of my rant. I hope you get that I don’t want to be a commodity just because I’m a minority in the disability sector.

I am single.

I do not have family close by.

I cannot live with my family members.

At this rate, I will never be a homeowner.

We already worked out I will never have kids, right?

I will never drive again? That one is not in doubt…………………

But I care about the environment, I care about the elderly. Since, I will soon be expected to live in an Aged Care Facility!

Oh yeah! And while people with disabilities are no longer institutionalized these days in Australia. You knew, these ‘places’ known to house people with severe Autism or Mental Health issues that rather than deal with the behaviour of the ‘tenants’ (seems the wrong word) Too soft somehow, they put bike helmets on them so when they bash their heads against walls/floors, they no longer hurt themselves.

https://www.myskills.gov.au/courses/details?Code=UEE20711

SO, NO! THE AUSTRALIAN GOVERNMENT NEEDS TO HEAR ME ROAR!

I WILL NOT BE A COMMODITY TO BE SOLD!

Group homes exist for people with some disabilities.

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And of one I’ve heard of, it houses 11 people who will attest to it sounding exactly like a prison or institution.

Recreational space under lock and key. The office not open to tenants to enter and lights on the outside all night.

Advocacy

Published September 12, 2016 by helentastic67

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Advocacy

People don’t realise how much self-advocacy is involved in having a disability and remaining independent.

People would think I have everything in the whole damn world thrown at me because I have a disability.

However, in reality, I’m forever pushing about 5 different issues and at any given time.

You probably wouldn’t believe me but on my limited income I live in private rental. Yes this means I qualify for Rent Assistance, but it hasn’t increased since 2007 when I first qualified for my pension and while rent has continued to increase, Rent Assistance has never increased in line with the market.

The reality? THREE times I’ve moved since 2007, I’ve had to move further from my supports and comfort zone, further from the city. Let’s not forget, I have to compromise, quality of my home and size.

advocacy

(I went to an open for inspection on Saturday as I’m having to contemplate moving) and the kitchen was crappy 70’s! Not even nice or retro 70’s! We’re talking three kinds of BROWN TILE where there was already BROWN CUPBOARDS! In a really small space, I can’t do it!

I grew up in a brown 70’s house (my dad still lives there) and a BROWN SCHOOL UNIFORM. I’ve suffered enough!

NUMBER 2! My second issue I’m dealing with right now , I’m dealing with the Government and my 2^nd appeal so my pension is not reduced every fortnight for the rest of my natural born life!

I’m not being melodramatic, they really want to reduce my allowance at a small amount per fortnight for the next 24 years!

Keep in mind, they harass me every 3 months threatening to take a significantly larger portion that would see me not pay my rent or eat!

Also keep in mind, I’ve previously stated eat Salami to shorten my life and if this keeps up I won’t be able to afford Salami either.

Perhaps, if I’m feeling a Part 2 to this, so stay tuned….. NEXT!!!!

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Black Dog

Published September 5, 2016 by helentastic67

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Black Dog

There is a thing that happens consistently, I think its DEPRESSION related where everything gets too hard and shit is stacked on top of shit and we get overwhelmed.

So, when if you broke things down to one problem at a time and someone give you some contacts or solutions you would generally think they could move/motivate themselves to take that first step, but what really happens is by then they can’t see beyond the overwhelming DEPRESSION to help themselves.

Poem depression

But they can’t!

I think it’s okay to be DEPRESSED. It happens. It’s OK to admit you are and definitely to ask for help.

RU OK

It’s not okay to sit and wallow too long and when given the tools to wait to be rescued.

There is a great sense of achievement to take the first step and make a call.

It’s hard to make decisions when you are DEPRESSED. But when you do, it makes it easier to do the next thing.

I highly recommend not just the method of putting out ‘spot-fires’ but picking the quickest and easiest solution to help boost morale.

I know I make it sound so easy. And it’s not, but onward and upwards.

Grumpy Cat

Hidden Pain

Published August 26, 2016 by helentastic67

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Hidden Pain

So, I know I get a little backlash out there. My disability has managed to leave me with the ability to walk with the aid of a walking stick (Not complaining).

And therefore I have a level of independence to go out and do things.

Yesterday was Monday, I had my Carer at 9am. We were done an hour later. I made my own breakfast and light lunch. I actually ate my breakfast on the couch for a change. I often eat it in a hurry on the train to the city on the days I go out. Ridiculous!

My appointment wasn’t until 3pm and while I really wanted to go back to bed and to sleep I figured my Landlord was due to mow the lawns. I’ve been watching it get long and overgrown the last two weeks. And let’s face it, I had to get to Medicare to claim two receipts. Medicare is my ‘Other Bank’ and I don’t claim much these days.

So, off I went to the city. That translates like this;

Text my Young John (will tell you about him another time; get your tissues ready) Young John drives me to a train station closer to the city. It’s more convenient and a train goes through every 10 minutes.

Get on train and in the city in about 20 minutes. The train platform is an easy one for me, it is just on Platform 1 so right out onto Flinders Street and cross.

I crossed between 2 pedestrian crossings to save time. Traffic had stopped all the same.

I made a stop at the shop I used to visit to have a quick chat to Peter. He was the 3red stop for me, back in my Promoter days every Monday Peter runs a little independent Music/Clothing/Tattooist/Body art/Gothic shop that is literally down an alley and down in the basement. Awkward stairs. Handrails not on the right but I make it in one piece, because I won’t QUIT!!!

I once flew down the stairs and up again but after a little catch up.

No independent bands touring anytime soon either. Peter goes up and comes back down for me in the lift.

Still had to do about 10 steps down to street level. Anyway, I give a nice older lady some directions as she looks a little lost and confused (don’t we all?).

Walk several large blocks to Medicare. Feel good! Big strides, can see and most people respectfully move out of my way. Not everyone, but most!

Medicare a busy place. Don’t want to wait today so I fill in the forms. Very little information required. Staple and put in the post box.

They will process and by tomorrow, I’ll be $106. Richer!!

Anyway, cross two streets. And wait for a tram.

Catching trams in Melbourne

I’m only going halfway home as that’s where my appointment is. But the tram isn’t a flatbed tram. It’s not disability friendly! So, three big steps. Word from the wise, lead with the stronger leg and I always sit just inside the door. Commonly referred to and by other disabled friends as “My seat!” We each call it that and when we are together we prioritise who needs it more. Or this allows me to sit there because they are gentlemen…

Anyway, get to Collingwood and go into shop that requires a few steps. No handrail. Walk 15 minutes to appointment. Was warm as the last day of summer in Melbourne.

Time to sit for a bit before my appointment.

I see Gerry who does Shiatsu every 3-4 weeks for an hour, he works on my back, shoulders and arms and a little on my neck.

Afterwards, he gives me a lift up the street (it’s uphill) and I heave myself up onto the tram again for the 20 minute journey home.

Off tram at my stop and walk 10-15 minutes. Happy to get home, not too desperate for the loo. 5 steps up and inside!

So Tuesday. Got the day off today. No appointments! Just phone calls to make sure my Carers are sorted for the next 10 days and any transport needs.

Struggle to get it together! Things hurt! For once my head doesn’t hurt but my thighs hurt and my right shoulder and arm. And it hurts to walk. Want to make reference to feel like, I’ve been on a horse for a week, but don’t know what that’s like. Dragging my left foot a little today.

Lastly, while my transport yesterday was all fine and Gerry volunteers his time today I’m paying for it!

Every step, every curb I negotiated I’m feeling it today! And tomorrow we do it all again.

Closer to home this time, but Wednesday is my pinchy/stabby day.

Chiropractor followed by Acupuncture. Two appointments I have weekly to help me maintain my independence. Having a disability really is a full time job…

Finding a Housemate

Published August 15, 2016 by helentastic67

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Finding a Housemate

So, finding a housemate is crap at the best of times. I wish I’d counted how many people I’d do the song and dance for to present myself as a normal person, just so I could find a responsible adult to share the rent and expenses.

I just found this description of someone I had look through that 1^st house. Because sometimes it’s now you re call people not by name of how they look.

Here goes;

“Horror/Action/Gemini/Butcher/Maids outfit while cleaning/Cross dresser/Porn!

Also think this was a guy who said he would be happy to be my Carer. (help me after a shower etc)

To be clear that was never going to happen!

I don’t require my housemate to help me EVER that requires them to see me naked! Boundaries people.

Briefly, I had a woman move in who told me one thing and did another.

Then had a tall Frenchman move in who stayed a year. He paid the rent and worked away at times giving the place to myself – Bliss!

He was not, I repeat, NOT my favourite ever housemate. He wasn’t my least favourite either. But he wasn’t my favourite and I now try hard not to judge other French tourists and such by my year or so co-habituating with him.

Some woman would ask “Oh, French, so sexy!”

To which I would reply “Um?, No!” Bon!

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