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.

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(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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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.

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It is really hard for me to switch off.

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

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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

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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

2.10am

Published September 2, 2016 by helentastic67

night writing 2.10am!

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.

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 2^nd 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 1^st 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!

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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

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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…

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)

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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…

2011

Published August 19, 2016 by helentastic67

Kitten lying down 2011

Remembrance Day! Let’s come back to that!

Don’t get excited, not in the way we would wish!

I also learned about Morphine as a form of pain relief!

On the 6^th January I lifted a heavy suit case one handed!

My OT’s had been very impressed with my maintaining a level of independence often carrying a 10 kg bag of Kitty Litter through the house to save my Carers doing it or my ex, before he left.

But that suitcase was the straw that broke the camel’s back. First, I think it just hurt to sit! It was pure agony, pain shooting down my good leg…

I has some tests, x-rays and muscle relaxants and after a period of time trying to find the right drug for pain relief and the right tests. I found myself spending a year on my bed waiting for surgery to a bulging disc.

Bulging disc

While working my way through enough Oxy to drug a horse.

While in hindsight, I’ve spent a lot of time with a headache, I’ve likely said, I wasn’t one to reach for pills. I wasn’t anti-pills however, there was always other ways to treat it. An Osteo (Osteopath) or a Chiropractor!

A migraine always meant a trip to the Chiropractors to put my Atlas Bone in or adjust it! (http://simpleascension.com/out-of-alignment-atlas-bone-now-known-to-cause-dozens-of-health-issues/ )

Good night sleep, back to normal!

Where was I? So after a period of time found the perfect balance of drugs for maintaining a prone existence that year was;

20mg’s Oxy Contin during the day. That’s the slow release!

10mg’s Oxy Contin at night.

And if I had a brief taxi ride to my chiropractors twice a week, I would take 5mg’s Oxy Norm. (Fast release, but really only 3 hours!)

Chiropractor joke

I didn’t see much of the world that year!

I would taxi to my GP and see him while lying on his table (bed)…

And your likely wondering what the significance to Remembrance Day is? Keeping in mind I lifted that heavy suitcase on January 6th. Remembrance Day is November 11. that was the day I finally had surgery. I’d had 2 Nerve Root injections. Which were not my favourite and hurt like a needle being rammed into my spine without anesthetic. No wait. That’s literally exactly what it was. Twice!
And that comment about the horse? Oh, yeah. At the end of the year I saw my dentist for a small filling. He gave me an injection and even after a few minutes I could still feel him drilling. After a second injection, I could still feel him drilling. Now, I hate to repeat myself but after the second injection I could still feel him drilling. But after the third I was all good to go!
My dentist who knew I’d spent the year on opiates for pain relief likened me to a horse because I’d build up a tolerance and the average dose wasn’t enough.
Ironically, my filling was on my right side. And I had to go to my GP afterwards. With my facial droop on my left I already slur a little when I speak and if I’m particularly tired. So, that day I really did sound as if I’d had a stroke. Luckily my GP is fluent in several languages including stroke. Winning!

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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Then I had to move and find a new housemate!

Moving is annoying at the best of times!

Moving with a disability is a pain in the ASS!!!

Retrograde

Published August 12, 2016 by helentastic67

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Retrograde

Have a very bad case of procrastination now! And it’s partly because I just want to write about what’s happening in life now and partly because in order to have any of it make sense you need to know about what happened in the past. And as far as the post, I’m up to telling about some of the “hard parts”! So I guess were going RETROGRADE! Just for a little while!

And I might start by mentioning how important a woman’s hair is to her self-worth and her identity. And I mention this, perhaps (again) because it’s important…

My treatment, literally 20 (?) day’s ended on a Friday. On the weekend my partner (sorry, boyfriend) had his daughter with us and on the Sunday morning I got in the shower to wash my hair, so I could be presentable for an outing. We went to some typical ‘family’ adventure in Carlton and my scalp had been a little itchy around the hairline around the back.

I took my hair down, usually worn in a bun and I had matted bits. I pulled them out and got in the shower. I would normally brush it with conditioner in it. There was a corner part of the bath (shower over bath) where I could sit and as I brushed it, it kept coming out in my hands.

I don’t recall crying that day. I didn’t know how bad it was. I got out of the shower dried, dressed and put my hair up (wet).

Then I looked in the mirror!

No hair Helen

It was bad!

It was so obvious how much hair I’d lost, I had my boyfriend bring me my phone and I rang a friend. An old lady who lived in an old people’s village in the same suburb.

I had waited in the bathroom not wanting to scare my boyfriend’s daughter as she was about 4 years old!

I also didn’t know how to fashion/style the scarf, so she helped me with that also.

We went out and someone’s young daughter was looking at me oddly. I felt very self-conscious and I felt a little like the young girl thought I was a Muslim woman. (Not that there’s anything wrong with that!)

The Monday morning, I washed my hair again and this time I did cry. I also had the time to cry as well. And I got how Samantha from (SATC) had felt!

I wept!

That day, I texted my boyfriend and said simply ‘Hey Honey, can you buzz my hair off tonight?’ to which he simply replied ‘sure’ or ‘yes’ or whatever! And that is how I came to lean forward over the bathroom sink about once a month for six months until it started to grow back evenly.

When we had this routine our conversations went something like this;

Keeping in mind my boyfriend wore his hair as a Number one and was from the States and yet to get his permanent residency.

‘I wonder where the local recruitment office is’

To which I would answer;

They will take you before they take me!’

Oh, how we laughed!

What follows is a series of photos of my hair, or lack of and stages of it growing back.

I had pretty much stuck to the same hairstyle since I grew my hair out at about 16, so I really never thought to keep it short.

My bun and long hair had been my style ever since. I have curlier hair when it’s short and that translates to I hate curls!

Now about 8 years later I’m back to a once yearly haircut even if it means I have 4 inches off. I’m OK with that. Its reasonable low maintenance and I wash it on a Monday and Friday, my carers brushing it for me as I stand in the shower then they put it up for me. Sunday and Thursday being my messy hair days.

There are short bits around my temple and the back that drives me crazy another reason I don’t think short hair is for me…

Bad hair day

My anxiety would make me play with it a lot and I don’t need that. So, I figure.

Anyway, that’s enough about hair because when I complained about it to my nurse where I had my treatment she told me not to complain as I was ‘Lucky to have hair!’

I just wish I’d been told to get some hats! I was given a voucher of $50 for a wig and by the time that happened some of the side effects had kicked in and I didn’t have 2 working arms to put on a wig… If anyone has ever brought a wig or gone shopping for one, they would also tell you $50 is not going to help!

When I had no hair I really noticed old men sporting the comb-over hairdo! They really seemed to be more noticeable then. I wanted to go stand next to them and take off my hat and tell them;

comb-over