Selfish

Published June 1, 2018 by helentastic67

Selfish

I have dilly dallied about writing this post for some time because of the obvious slanderous nature (note title) of the message I want to shine the light on.

Shine a light

There are people who have a disability and they travel, they work, they shop, they enjoy life as a consumer of all good things. Yet, they will bitch, whinge and moan (maybe that should be the title) about how hard they have worked to appear ‘Normal’.

Normal

I know in many ways I appear normal and when I am forced to explain I actually have a brain injury, they are surprised.

I am normal

Smart Arse

Published February 5, 2018 by helentastic67

Smart arse

Smart Arse

People who have known me over the past 10+ years, they have commented on my sharp wit and that I’ve got the quickest wit of anyone she knows.

Sharp wit

Hello! Compliment. Right here…

There are people who treat me like I’m an idiot because I have a brain injury. There are many ways people comment on my disability. One particular consistent ‘opening’ is – “You look like you’ve been through the wars!” Which I received most recently today. I was a little wet from having to walk a short distance in the rain. So everything else is my base-line already and I didn’t feel the need to comment.

Through the wars

First time ever I came up with the best response, but not on the spot.

So, here’s how I will respond to that line in the future.

“Not a war, a battle! I won!

I won

Yeah! This is what winning looks like and then imagine what loosing would have looked like.”

I generally follow comments like this with a sharp look and a smile. So they know I do mean it, but that I’ve also accepted it.

Smile

Another older lady sat in the waiting room to wait for her taxi. She also had a walking stick, now she commented to me; “That’s the thing with stroke, it takes your independence!” I’m sure I’ve encountered this woman before, her name is also Helen.

Independence

I respond swiftly with ‘Ah, but it doesn’t take our sense of humour.’

I think I even put a little Scottish brogue on it in the tone of “But they will never take our freedom.”

Sense of Humour

Hot off the Press – 21st August 2017

Published August 21, 2017 by helentastic67

Hot off the Press 2108

Hot off the Press

This week comes with an explanation, I guess. I write this post throughout the week and save it in my drafts folder in my email so I cannot miss stuff. Each day seems to bring lots of little details that are important and shouldn’t be neglected! So, enjoy.

Monday, had intended to go to the city and see a friend’s art instillation of handstands in the Arts Centre. A woman with a brain injury who is an artist and she does screen printing and a series of stickers of her doing handstands. She does her handstands to relieve stress and pain from her injuries. Having her work on display in the Arts Centre in Melbourne is an achievement in itself.
I have been trying to go see it for a month or more now and I don’t want to miss it. I try to get to all her exhibitions………..but I prefer company.

Art Centre

I had put out for a carer to accompany me so I could also pick up some things in the city and have my carer carry them. My disc bulge I had surgery to in 2011 has been giving me some warning that I should avoid lifting heavy things, or light things for that matter.

One of my agencies was more concerned I would injure my carer by carrying something heavy. I don’t know what she thought I had been intending to buy. I wasn’t planning on buying bricks or anything……… They couldn’t find a carer, so I changed my mind and had a lazy day off. So much for the NDIS being Life Changing!

Tuesday! Went to the city and participated in an art project. Creating something for a projection to happen down in Warrnambool. I won’t be going but Hellonwheels will make an appearance. Yes, yes. I’ll share footage when that happens!

Warrnambool

If I were to go, watching bright flickering lights while at night would be the kind of migraine inducing thing that would not just stay at the normal level of pain I can just deal with. I don’t want to be that girl who comes home from an adventure via a hospital.

Did some walking and collected 2 of the 3 things I had needed the pack-mule for. I had to collect my 3-monthly supply of comics. Thankfully only 8 making me think I might catch up soon? What will I read then? The comics were the lightest item I was carrying.

Pack mule

Tram home and then a lengthy walk. I arrived to visit the builders down the street and called quits. Matt gave my bag a lift home and I continued much lighter still trying to get some steps on the pedometer on my phone, managed 3,500+. Not bad, right? Except, I’ve a nasty callus on the side of my left foot. I suspect caused by not having the right shoes for this AFO and being fitted by a specialist in medically approved shoes. Have I mentioned I mostly can’t feel my left foot until I hurts?
Yeah, and I wear thick socks around the house as I scuff slippers. And it hurt to walk on any surface except carpet!

Yeah, and I repeat. Not Life Changing NDIS!

Really hoping I can get a carer to get me to my Botox specialist appointment on Friday! The Botox, the hinged AFO and shoes is all related. I’m hoping my mum doesn’t need to drive a 7-hour round trip just to take me!

Botox

By the end of this post you will know the answer to that! Finally, Tuesday. Like that isn’t enough, tore a fingernail into flesh, on my left hand. You might not recall, I can’t feel my left fingers until they hurt also? I can’t cut my own nails and I’m not allowed to have my carers do it for me. I definitely can’t afford to pay someone. Yet, I can’t not! It’s never ending!

Another Wednesday arrives and while very windy I was able to scooter and leave hellonwheels on the High Street near my usual final appointment of the day. I definitely couldn’t have made much of a dent on the pedometer. Left foot is rather painful right now. Maybe I’ll finally seem like someone should fund my new shoes!

It’s ridiculous that because it seems I’m doing everything for myself and doing OK so it seems that it’s considered sustainable and therefore don’t need help. So many things hurt tonight.
Possibly not helped by the lack of Osteo, Mio/Remedial of acupuncture the last few weeks.
Have really made excuses to not go out as much because Young John is away and I rely on him so much to get me places. (he has sent me pictures of plates of figs and such, so he’s obviously suffered greatly)

And the heavy lifting I’ve found myself doing today. I rearranged some unread comics this evening and discovered I’ve been reading them out of order. Who knew there was an order? Going to have to purchase a second storage box next time I’m at the comic shop. Can’t believe I’ve become that nerdy girl who sorts her comics. Not a terrible awful thing just don’t know how this came about.

Organise

Midnight Wednesday night. OK, officially Thursday morning got the message loud and clear. No! More! Technology! It was all not working for me in one way or another.
I quit!

Thursday, blessed Thursday. No appointments today! Luckily, it allowed me another afternoon Kip! I seem to get my best sleep in the afternoon and then after I’m up, I feel I’m good to go for another good 20 minutes…..(just kidding) still not getting through the constant build-up on my couch that’s eternal.

Mum arrived nice and early around 9.30pm, for a fun-filled 24-36 hours.

Friday! Completely smashed it! Had my Botox follow-up with the specialist. Was last injected St Valentine’s Day, best St V’s gift ever, despite it being in my calf muscle. They think I’m ready for the catwalk. (Kidding)

Then, as we had time before my next appointment we had a hit and run visit to the Swedish warehouse. Ironic that that particular post went live on the same day!

Stocked up on some tea light candles. And rescued a few plants, as I do every time. Hot footed it to my orthotist about the nice callus that has been giving me grief. Steven informed me I have been his first client to get my AFO funded and paid for by the NDIS! (The portal that you must navigate is monumentally difficult to understand what it requires of you or if the funds have been allocated and approved: Sounds awfully like they didn’t do a very good job and don’t want to spend the money!)
Hint: Steven rang at 10pm and must have gotten a staff member who couldn’t wait to finish for the night, so told him exactly what he needed to do so he could get paid and the guy could go home. Apparently, the call centre is open until 10pm.

Steven stretched out the side of the AFO so no more callus.

Drove back home from Richmond (not me, mum) and arrived in time to inhale lunch as my carer arrived to do my homecare and take me shopping. Ben managed to get the missing filter for my coffee percolator. Mum and her coffee needs are now sorted to her standards for the future. She left within 24 hours of her arriving in her little racing car. My mum makes an amazingly simple meal when she is here and I got to enjoy it late. Chilli’s and chips with a fried piece of white fish and thyme with a fried egg.
Pedometer tells me the day totalled 4,800+. Imagine what I could do every day if I had NDIA funded medically approved extra depth shoes that cost more than a week’s rent?

Now for the never-ending battle of clearing my couch and being off-grid for Saturday at least! Starting now at 11.59pm!

Saturday dawned with the realisation that GOT season 7 was finishing on Sunday night and it meant I had to binge the whole of the first 6 episodes before Sunday night.

Game of Thrones

So single girl date night again meant TV and not a film and still unable to completely be off-grid.
Sunday, looking at my couch and it’s looking much better. No! You can’t see a picture.
Also, 5 comics were read this week. So happy days here!

Also considering to add another tally to mention each week. How many people ask me in the average week: What have you done to your arm? Seriously, if I had a dollar!

If I had a dollar

It’s, already Monday morning, try early and still not interested in going to bed.
Already considering the many things I have to do tomorrow. Might just smash out a few emails now to make a start…….
1.30am……..
Have a great week!
Cheers,
H

Have a great week

Baby Brain

Published January 27, 2017 by helentastic67

mommybrain

Baby Brain

Once upon a time I sat at my GP’s office and while waiting a woman and her young baby sat outside the nurse’s room.

After she had been there for some minutes, she spoke to her baby and claimed “Mummy has a brain injury”.

lost-my-mind

Got up and left.

Now, I imagine the woman was suffering from something known as “Baby Brain”, where for some reason they are overloaded with a mixture of happy Mummy chemicals, a very busy schedule and likely a lack of sleep due to said adorable fashion statement baby. Looks like a baby, I suggest.

Perhaps you have a baby?

So, please feel free for having a baby brain.

I have a brain injury! I didn’t choose to have a brain injury. So, considering it’s all I have when it comes to blaming any of my weird moments so, please don’t steal it.

my-opinion

Competition – WTF

Published January 9, 2017 by helentastic67

competition

Competition – WTF

I don’t know what it is with some people and their Brain Injuries. They get very competitive.

“MY BRAIN INJURY IS WORSE THAN YOURS!”

competition-2

And I’m here to stay….. YES IT IS!

competition-1

Being part of a community of people with Brain Injuries and the community mentality that we can all be grouped together (socially and otherwise) means everyone thinks their Brain Injury is worse than the next person.

brain-injury-1

No one seems to have any appreciation for how the next person’s situation is completely different to everyone else.

we-are-not-all-the-same-2

I find it very frustrating that people are actually competing about who is getting the NDIS first. Let me tell you, the pilot regions got it first and in the scheme of things “took one for the Team” and ironed out all the kinks. (well most of them).

Ironing out the kinks.

I live in one of the 4 council districts in North/East Melbourne that are getting it on July 1^st 2016,

I have a friend (loose term) who loves to tell me he’s getting it before me!

Um! Let’s call him Fred! And remember, his name is not Fred and I really hope I don’t meet a Fred, be or have a Fred follow my blog because then I’ll be in trouble!

friend-fred

So, let me give you some background re-Fred. He owns his own home, he has family close by who include him in their lives, he can work and study.

He most importantly has a package (ISP Individual Support Package) which pays for carers, he chooses NOT to use because he finds them inconvenient and uses the funds for other purposes.

I know people who have TAC funding. (Funded because of car accident) who won their own home. Some are happy to brag about how poor they are while they have an excess. Some who have their own home because of TAC who are quiet and humble and very kind.

funding-2

To be clear, TAC funding and people on Workcover because they were injured on the way to work, there supports will end when the NDIS takes over.

Some people with TAC funding are getting on board to find out what to expect.

Others I’ve tried to tell them they need to catch up and learn about the NDIS because it will affect them. They are burying their heads in the sand.

Sink or swim right.

You can lead a horse to water, but you can’t make them drink it.

But in the meantime, let’s be a bit nicer to each other.

It that too much to ask?

be-kind

Botox

Published September 23, 2016 by helentastic67

botoks_allergan_ilac

Botox

I’ve had Botox! Four times for free! Ask me how!

Okay, this is how I like to break the news to people because the only thing people have heard of Botox being used for, is to pump in the lines on their faces to get rid of the wrinkles.

But people get it for other things.

They might get it injected into their scalp, armpits or even a woman’s bladder. http://www.webmd.com/urinary-incontinence-oab/news/20150515/botox-overactive-bladder

sweat-glands

The bladder, I’ve not heard much about, but the first two I hear it helps with perspiration problems.

Keep in mind, in no way, shape or form am I doing a sales pitch for Botox (botulinum Toxin)

https://en.wikipedia.org/wiki/Botulinum_toxin

Hear me when I say this; it is the MOST TOXIC THING YOU CAN PUT IN YOUR BODY.

But anyway, I haven’t been lucky enough to want/need it for vanities sake!

I’ve had it out of necessities sake.

Twice in my arm and twice in my calf for what’s called Spasticity!

bent-wrist

People who suffer ‘stroke’ or ‘stroke like symptoms’ like myself will have an arm that won’t relax and straighten. In extreme cases, some people will have a hand that will not open.

Imagine what happens if you can’t wash or dry your hand. It can lead to other problems, like a stroke is not enough. Broken skin conditions don’t help.

They are very careful with where and how to inject exactly the right muscle for the best effect…

In the correct muscle in the arm, it relaxes other muscles lower down in the arm and ideally the hand. It’s ideal to have a good STRETCH OF THE hand to be able to work on the hand.

It’s every important to do a lot of OT at this time to maximise the benefits of the Botox.

Because after 3-4 months the Botox wears off and hopefully when the muscles that were ‘relaxed’ by the Botox wake-up there is a better balance between those muscles and the ones exercise have been working on.

You generally don’t have Botox all the time because you can build up an immunity to it.

I always like to use the example that one day all those faces in Hollywood will simultaneously drop. Sad face?

I might do a You tube demo to show what Botox in the calf is for…………………………….

injection-sites

injection-calf-muscle

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!

DEPRESSION! THE FUCKING POINT!!

Published November 26, 2015 by helentastic67

Depression I may have written this before, but there are a set of questions that people ask to assess a client/patients/mental status. Usually when I get asked these questions by someone who is trying to help me; A doctor, a psychologist, case manager etc. And they are often embarrassed to ask. (I have been probed by many embarrassing questions) After a few questions, I rush in and answer the ‘rest’ of the questions. Let me lay them out for you. They go something like this:-

Have you ever tried to kill yourself?
Answer – No

Have you ever thought about it?
Answer – Yes

Have you ever planned way’s to kill yourself?
Answer – Yes

At some point I cut off the steady flow of questions with the rest of my answers, something like ‘Yes!’ ‘No!’, ‘No!’, ‘Yes!’, ‘Hell No!!’ ‘My mother would revive me to kill me herself!’

This usually confuses the person asking the questions. So the rest of the questions go along the lines of – ‘Will you attempt to take your life?’ ‘No!’ Are you sure (or something along those lines)?’ ‘You will not take your own life?’ This is the answer where I mention my mother.”

I am largely seen as someone with a happy disposition and to be clear, it’s a façade! I cover my sadness with humour. I do it very well. But to be clear sometimes, I think – ‘what is the fucking point?’

So you better appreciate the ‘Fucking Point!’I am a 41ish year old single woman who was born with a brain injury.

After a reasonably “normal” life with the usual ‘hopes and dreams and aspirations for a kind world, love, family, children, a career with some moral standing and happy outcomes, a home, friends, holidays to faraway lands and enough abundance to give generously to others in need.

I was diagnosed with said brain injury and treatment to which ‘cured any potential of a stroke or certain death, and left me with ironically a permanent disability, resembling a stroke!’ And some!

Painfully, people don’t understand my chronic medical conditions and doctors have no answers how someone is born with a brain injury.

So it’s completely inconceivable that what my reality today wasn’t self inflicted.

I don’t fit into any ‘boxes’ for funding and now it’s questionable even the NDIS (National Disability Insurance Scheme) will solve any of my current problems either. It’s been the only beam of light at the end of the tunnel in the last 5 years I’ve had, my permanent disability and NO FUNDING.

So should anyone ever stupidly ask the question, “Why?” She seems OK. She seems happy. She was coping.

Let me answer this now!

I was not happy! Even with a disability, I was barely hanging in there!

To all those people tendering for business and doing big money grab to work in the Disability Sector, you dropped the ball! It was all about helping yourselves. I am NOT AND NEVER HAVE BEEN A COMMODITY, in your game.

My disability and my struggle has not been for your entertainment and your resources to beg corporations for funding.

Give me a Solution NOT MORE PROBLEMS!

If you can’t – STOP HELPING

*And to the best mum in the world! We fought a good fight and there was nothing more you could have done. You don’t deserve another of your children to have perished. However the constant dealing with all the idiots just got too much.