Advocacy

Published September 12, 2016 by helentastic67

advocacy-2

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 2nd 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!!!!

advocacy-1

From Ken Collins: Adapt, Improvise, Overcome and Move On!

Published September 9, 2016 by helentastic67

Basics are often the best!

brokenbrilliant's avatarBroken Brain - Brilliant Mind

Namibia Desert It can feel like you’re slogging through a desert, sometimes. But there’s an oasis in the distance… for sure.

Ken Collins shares his wisdom with us. Great stuff!

Some of the lessons I have learned after 39 years of living with a brain injury.

There are four major areas to work on during the brain injury recovery process:

Adapt, Improvise, Overcome and Move On!

Move on and try not to be critical of mistakes you make because in the early years of your recovery there will be too many to count.

Learn from these experiences and move on.

Keep stress and anxiety to a minimum everyday!

Stress and anxiety triggers the fight or flight response in the mid-brain. You don’t have any control of this response because it is part of the Emotional Nervous System.

When the fight or flight response is activated it will increase confusion and make it…

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12.30am

Published September 9, 2016 by helentastic67

Night Owl

12.30am

Wow, look at that! Got motivated early. I seem to get very creative after midnight and that is of course bedtime for most normal people. But we already all realize I’m not normal.

I don’t know when I started being a night owl. Probably in my late teens. Mum recently reminded me, I would come home from High School and go to bed for a nap. After dinner I would get stuck into my artwork and stick at it for hours.

night-owl-quote

 

When I was 16, I worked at a Supermarket part time, as well as High School on top of babysitting my baby sister. I moved away to study when I was 19. Continued to work also and started going to clubs in Melbourne. This became my social outlet.

And I guess the bad sleeping pattern continued. These days I’m lucky if I can skip the pre-dinner kip, but by 10pm I hit my second wind and become very productive, even if I’m just glued to the couch sorting admin and doing a little drawing.

night_owl-1

It is really hard for me to switch off.

I have a very busy brain, but I’ll get to that another day.

busy-brain

In the meantime, I’ve always got plenty of stuff that needs doing and I might be one handed but if I don’t do it, it doesn’t get done.

So I do it…

 

Black Dog

Published September 5, 2016 by helentastic67

depression-negative-feelings

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

2.10am

Published September 2, 2016 by helentastic67

 

 

night writing2.10am!

Let’s do a little experiment! Let’s see if I can successfully substitute the F Bomb! (Helen’s favourite word!) With a substitute. Also starts with ‘F’!

Keep in mind my GP will gauge how I am mentally by now many times I drop the Fudge word! When I’m frustrated I use the Fudge word a lot and when I see my GP I debrief him on all the things incompetent people aren’t doing. We kind of case manage my care together which works well.

GP

People with an ABI need a lot of sleep. I can’t recall when I last had a night of 8 hours undisturbed! Seriously, maybe never!

I go to bed late (or early) I think you can tell. Tonight I managed not to have my pre-dinner kip. It’s a miracle! And surprising considering the start to my day.

Went to sleep at 2 am.

Stupid neighbours think it’s OK to run their washer/dryer all night long disturbing my sleep!

So already on bad start!

Fudging asshat! Parks his Bogan car outside my bedroom window. Insists on warming his motor like it’s the 70’s and his car is vintage – it’s not! At 6.30am – Fudge!!!

Asshat! Goes back inside and comes back 5 minutes later.

Can’t believe I’ve put up with this 3 and a bit years!

Get back to sleep!

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8.30am – there is a chainsaw!

What the Fudge???

But wait! Then a wood chipper!

FUDGE!!!

30 minutes and it’s done.

Bet back to sleep after hitting the MEPACS ALARM!
(Diverting a 9.30 wake up)

Had put on my washing machine so again, disturbed sleep.

10.45am – my carer arrives early!

FUDGE!!!

Discussed today with my GP the lack of follow-up by a hospital Orthotists to get funding application for a 2nd pair of shoes.

shoes for afo 1

For say. If these ones get wet, get sweaty or die because they are my only shoes to wear with my AFO (Ankle Foot Orthotic)

“FUDGE ME!” I tell my GP when he asks how hard it is for the Orthotists to do it?

He smiles and I try to look a little repentant.

We already have a backup plan.

I have an appointment with a private Orthotists I’ve seen previously. He won’t have a problem doing the forms to get me the funding for both an AFO and a pair of shoes.

ankle+foot+orthotic+modification

It’s just going to take some time!

And I guess the NDIS kicks in on the 1st of July!

FUDGE!!!

Time for bed.

My first wake-up call is at 6.30am after all!

Strangely, my brain is all systems ‘GO’!

F off trying to sleep

 

 

2 am

Published August 29, 2016 by helentastic67

2 am 3

2am/Again!

I have written a million posts in my head today! Have a busy week and Melbourne is hot!

Not yet mentioned perhaps but I don’t cope in the heat!

 

2 am 1

Have a 4 day weekend at the end of this chaos – can’t wait!

Promise to catch up on some writing then.

Sweetdreams…

Grumpy cat

Hidden Pain

Published August 26, 2016 by helentastic67

hemiparesis-simulator_1

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…

 

You don’t HAVE to lose it as you age

Published August 24, 2016 by helentastic67

I confess I am just hearing drink more coffee and eat more chocolate! However, never stop learning!

Madelyn Griffith-Haynie, MCC, SCAC's avatarADD . . . and-so-much-more

Moving Past Mind-Blips and “Senior Moments”

Maintaining & improving your brain’s vitality as you age

by Madelyn Griffith-Haynie,CTP, CMC, A.C.T, MCC, SCAC
ReflectionsonCognitive Impairment and Dementia Protection

“A mind equipped with a wide range of
previously formed pattern recognition devices
can withstand the effects of neuroerosion
for a long time.”

~ Dr. Elkhonon Goldberg, PhD, from
The Wisdom Paradox 

Along with suggestions designed to help, this article begins to debunk the myth of “to be expected” age-related cognitive decline — as it explains the mechanics of memory and outlines the functional trajectory of the healthy brain as time marches on.

In the Memory Issues Series, anyone currently struggling to fit into a neurotypical mold, even if you are GenX or younger, will find a lot of information that will help you develop effective you-specific strategies to work around some of the…

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Waxing

Published August 22, 2016 by helentastic67

waxing

Waxing!

Wax on! Wax off! OK, this is not going to be a blog about the 80’s film Karate Kid, but life is short and I covered some intense replies yesterday.

If you forgot, didn’t realise and take it all in, recapping I have less sensation on my left side, generally looking like a stroke and referred to as a Hemi. Has a longer term, but let’s start with that.

(Hemiplegia: total or partial paralysis of one side of the body that results from disease of or injury to the motor centres of the brain)

hemiparesis-simulator_1

Every so often, I still like to get a leg wax. No one see’s my legs that count. But every now and again even my Carers will comment. They don’t get out of control, but word from the wise;

HEAT ENCOURAGES HAIR GROWTH!

I try to keep an eye on them and I gauge it as;

It’s not that bad yet!

A little longer!

Start saving!

And God damn it! It’s going to hurt!

So, Fun-Fact Ladies

Things that make waxing hurt more.

Crazy lady hormones, 1 week on either side – JUST DO IT!

Stimulants! COFFEE!!!!!

Save your coffee for after waxing…

So, you would think with my ‘Hemi’ that my left leg wouldn’t hurt as much?

I should be so lucky! They fucking hurt the same!!!!!!

Today my beautician actually asked which leg I wanted waxed first. To be clear, she does them both at the same time and you rotate like a chicken on a rotisserie “thing” in an over, but the reason she asked is because I’m right handed.

Therefore the left leg will hurt more. To be clear, it’s nice to get a leg wax every now and again, even if I don’t wear shorts out of the house and only my Carers all woman see them. It’s something I do for me.

But these days, I even self-medicate for a leg wax!

I find 10mg of Oxy normal is my ‘Happy Place’ for a level of tolerance! 3 hours of pain relief while my left leg twitches is about all I can deal with.

So, there you go, 1 F** Bomb and an amazing little ditty for something different.

waxed legs

Final result…