Caring and Sharing

Published June 3, 2016 by helentastic67

Caring and sharing

Caring and sharing…

So, part of needing carers a huge problem is rostering.

Over the years I’ve dealt with many, many people who have done the rostering and my expectations have moved a great deal to cater to the irregularity and unexpectedness of when and who will turn up!

I need a lot of sleep and like most of us, I don’t get nearly enough, I often do my ‘best work’ late at night and struggle to wake up and engage my brain!

Don’t worry, I can answer the phone if it wakes me and snap right into ‘work’ mode! But I really do try to sleep up to my carer arrives and rings the doorbell.

Or at times the office rings me to tell me my carer is at the front door.

Today, I had requested a carer for 9 am, because I didn’t have an appointment out until 12.30 pm and it was local and I could scooter there.

Lots of the carers are away at the moment so I was looking forward to seeing someone I haven’t seen in maybe 6 months. I was told she would arrive at 8.45 am. I know, it sounds positively pedantic but if you don’t sleep until 2 am, every minute counts!

I wish this could be a more interactive experience right now so I could say;

“Who wants to guess what time she came?’ And more importantly “Who wants to guess what time her roster said?”

That’s right! 8.20 am!!!! WTF!

So, it’s any wonder after an eventful day I couldn’t make it past 8.30 pm without a ‘kip’ on the couch. Had an hour which helped me power through the rest of the night of dinner, emails and chores. And despite this my left eye hurts.

Pills, I think and off to bed!

Stroke

Published May 30, 2016 by helentastic67

brain-stroke

Stroke!

Anyone can have a stroke. Young or old, unhealthy, healthy, smokers, non-smokers. You get the idea.

So we don’t say to young kids who have had a stroke, that they partied hard and took too many drugs do we?

I worked in pubs for all of my 20’s.

They were Alternative Clubs, by which I mean musically. I was a promoter/host/distributor.

Back in the day, before smart phones, when you went out to shops in retail shopping precincts to see posters of upcoming events/parties and get a nightclub ‘pass’.

I was the only promoter for the Alternative Club scene who had a retainer.

I spent several days and a week hitting the streets and sometimes up to 4-5 nights, all night out at clubs…

And I didn’t take drugs or drink, ok I barely drank. I drank Lemon, Lime and Bitters and occasionally at 4pm when my responsibilities were done, I had a Bailey’s on Ice.

I like to say, I was the most clean living person there with the exceptions of wearing leather and eating meat…

And despite writing this and explaining people still 1. Think I’m lying and 2. Presume I took drugs, even just once. NO, NO, I did not take drugs.

So you are probably wondering what happened?

Hopefully, by now you have Googled AVM. If not here is a link;

http://brainavm.oci.utoronto.ca/malformations/brain_avm_index.htm

Some AVM’s are small and operable. They are the ones that end up on those “real” medical shows. Example: Guy in his 20’s, studying hard, getting headaches, goes to hospital, they do a CAT scan.

Diagnose AVM, perform surgery.

Do touchy-feely tests in recovery.

Cured! Send home.

Helen’s commentary “um No!” Shaking head.

My AVM was large and deep (non-medical terms) mine had several arteries attached to it, feeding it and the nerve that works the left side of my body in the middle of the arteries.

They do say, if you can’t do something right, don’t bother.

So, yeah! Winning…

ABIAW

Published May 27, 2016 by helentastic67

North Melboure colours ABIAW

In Australia, were pretty organised in educating people about the dangers of causing one’s self injury.

Particularly when it comes to self-inflicted brain injuries or violence related Brain Injury.

Oh no! I used another acronym!

ABIAW stands for Acquired Brain Injury Awareness Week!

The first event I went to was about 5 or 6 years ago. The Service Provider hired a venue. The North Melbourne Football Club.

They arranged catering and a door prize. I won a North Melbourne Football Mug.

I do not do football – Grumpy face. And they invited some guest speakers and all of their clients and families (some anyway).

That day, rather than go up to people and say Hi!

Nice weather, I generally sought people out by asking what their ABI was…. I know sounds rude, but we all did it…

The only difference was I started by asking “so stroke” Partied hard and took too many drugs?”

Luckily they laughed and in turn asked me if I’d had a stroke, I then explain I’ve not had a stroke, it just looks that way…

I always decide ad hoc how much I bother to explain to people, because regardless of what I say, I know they are still thinking she partied too hard and took too many drugs…

Priorities

Published May 18, 2016 by helentastic67

Helens artwork Priorities!

So, these days I use a walking stick when I’m out of the house. There is a term for this. I am Ambulant!

And for those who are unfamiliar, I live in Melbourne Australia. Melbourne weather is known to be very erratic. I think crowded house was singing about Melbourne when they sang of ‘Four Seasons in one day!’

During the winter months, it helps to layer up with clothes because being Ambulant you really need to prioritise.

Walking stick or umbrella?

I sometimes after 8 years get a look of concern from the same people asking me if I have an umbrella.

Here is pretty easy, the answer is I GET WET…

The next one I think is pretty easy also.

Once a month I go to a committee meeting for a self-advocacy group I belong to. I cruise through Degreaves Street and pick up a coffee (medicine) to get me through the meetings.

So walking stick or Keep cup?

KEEP CUP!

Without my ‘medicine’ I don’t make it through those meetings. I often get a migraine just walking through the door and with a room full of people with an assortment of Brain Injuries I generally want to blow my brains out, pretty quickly…

Acquired Brain Injury

Published April 15, 2016 by helentastic67

Aquired brain injury 1

ABI

Okay, you have probably heard about it and even noticed I refer to having a brain injury, but have really not had me admit it or explain it. Until now…

This is it! If you don’t know for sure ABI stands for Acquired Brain Injury. There are others like TBI – Traumatic Brain Injury and I think there should be another acronym of which would be DDK – Doctors Don’t Know! More of that in just a second.

I have avoided doing the whole “Once upon a time, into my blog like most other blog’s for several reasons.

My story would start at the age of 34, when I found out about something I’d had for more than 34 years.
Many people get grumpy about how I now “Bang on” about Brain Injury, because I now know I have one! But they were always happy in the past when what I would “Bang on” about made them money. At least I have a Brain Injury to be Banging on” about.

But in reality I have a uniquely shitty ABI because DDK how it happens. There is no specific finding thrown at it to cure it!/Research it and the “cure” in my situation has left me looking like I’ve had a “stroke” without the funding and assistance.

But all the issues and negativity because people look at me like I did something to deserve the issue I now have.

I actually had a lifetime of some very subtle “things” that were easily dismissed until I was in a stressful work environment at 34 years of age where I was being bullied and when I was working with an older gentleman who had a son my age with MS (Multiple Sclerosis)..

He noticed I had a weakness in my left arm, I thought I was camouflaging and started to pester me to see my Doctor.

And so, I finally did go see my Doctor. The last thing on my list was that I had a slight weakness in my left arn.

His instant response was I needed a CAT Scan.

I got one and had my first experience of “Contrast” or Iodine” but again, more of that later. You will love that story!

So a few weeks later after my scan I returned to my GP’s office.

That next visit has become infamous. One of those days when you don’t remember anything else that happens except that one moment of clarity you will never forget.

My GP held my scan up to the window as though like a lightbox and pointed to one side of the scan stating “See this side?” “This is normal……” Oh how we love that term.

I could see the other side looked different, darker.

I kind of gave a “Yeah, what’s going on with…..?”

And he pointed at the area of the other side and described a cluster of arteries and called it an Arterio Venus Malformation or an AVM for short.

I confess to say, I had no idea what it meant or how it got there. But to say I’d had a pretty shitty week, having lost my job, I didn’t know what it meant or how it might affect my ability to get another job.

I also confess to say, I cried. Dr Chris made a move to comfort me (Lord love him) and I explained the shitty week I’d had.

Well this is not over, but I felt inspired and now it’s 3am so I really think it’s time for sleep.

Meanwhile, feel free to Google AVM, I always tell people it’s the medical one not the IT related one.

Dirty Old Lady

Published April 11, 2016 by helentastic67

Dirty Old Lady

A month ago, I realised I was a dirty old lady as the title suggest. I don’t know how this happened, but it was when I was watching a film. There was a scene where the male and female “leads” were together – Hello!

And she said to him “What is your tattoo of?”

I sat in my lounge on the couch and spoke to the room.

“Please God! Have to take something off!”

And off came the t-shirt!

So, either I’m a dirty old lady or I’m clairvoyant…

Administrator!

Published April 8, 2016 by helentastic67

Office-Administrator-Job-Description

Administrator!

So, sometimes I want to post a blog, just so I can tell people of my accomplishments. And I can but by the time you hear about them a month or more would have come to pass, but it’s the perfect Segway to me telling you about my process and intern my wonderful administrator.

My process starts with me trying to practice “mindfulness”.

Sometimes I’m waiting for the right thing to happen to trigger a post coming together, just right in my mind. I like to write with pen and paper. Old school.

Then, because of my many issues or deficits, whatever I have been stuck with that for about 5 years that I’ve been planning this blog and talking about it.

And I guess it’s taken a while for a few things to fall into place. Admittedly I was slow to get on the Social Media thing, and a bit longer to be introduced to the right person.

And that is how I met my Administrator!

She is my wizard who made my blog become a reality. More of this hero in a moment, but first I write long hand, copy and post about once a month. So far (Scanned once and emailed) and send to someone in Sydney who types my blog posts up, emails to me for final editing and then after she does some final searching for pictures and some networking “she posts”.

And she be my friend Noelle. And I’m not sure how much I’m allowed to tell you about her, so will pause here…..

Sometimes, I want to brag about the things I’ve just achieved, one-handed, but now there is no time.

I often debrief via text to check in with him.

Sometimes they go something like this;

“Had Chiro and Acupuncture today. And if I had a husband I’d be all over that as well!”

Over time I will tell you of my friends. I hope you will understand more about me and what I value by the friends I keep.

Also don’t be confused by the dates on my posts. I am a prolific writer and have been preparing and writing for this blog for years, so at times I will pull something out of my archives.

If and when I do it will be because it’s still current.

Or I’m still really angry about it….

The Horrors

Published April 4, 2016 by helentastic67

that-awkward-moment

The Horrors!!!

It’s Friday! Yeah!!!

In my house it means, wash my hair (it’s all grown back now!) and go out with my Young Janice and we go shopping.

So I took down my hair while my Personal Care (PC) carer started her chores and got undressed. Turned on the hot water and…….

NO HOT WATER!!!!

I had a day off yesterday. As in no appointments so no need to leave the house. I had lots of laundry to do so I did 4 loads.

I had notice my hot water service in the backyard had been leaking (from the top) and it seemed to get worse as the day went on.

I had finally sent a text to a friend to rate how bad this was from bad to worse?

The suggested broken thermostat, maybe. Which sounds not as bad (expensive) as having to convince my Property Manger it’s my God given right to have hot water and his job to take a yelling from my landlord if that’s what it took to have them part with the money.

I have those landlords who don’t want to maintain their properties, just want the money.

So, today my hair did not get washed and I had a bucket of water from the kettle and half shower.

Now, it’s the end of the day and a tradie ended up coming and he stated the Hot Water Service was Ka-put!

Glad he has to call my Property Manager, not me…

And the plumber is prepared to work on a Saturday morning because a weekend without a hot shower would just be a horror!

What is the Game?

Published April 1, 2016 by helentastic67

What is the Game

What is the game?

My favourite housemate ever and I used to have a game we used to love to play. Firstly, when I say ‘game’ don’t the wrong idea. And when I say ‘we’ loved to play, I mean I loved it and he dreaded it!

To give you some background this housemate, let’s call him “B”, and was very relaxed. He was a roadie and I considered him a pothead. He didn’t, but he smoked a spliff or 2 every night, but what do I know? I don’t smoke.

Ok, that’s the background out of the way.

Here’s how the game works. I would start at one end of the mantel piece in the lounge and touch a finger to the first ‘thing’ asking “What’s this and does it need to be here?”

“B” would pick up “this” item and we continued. Halfway along the mantle piece he would get ahead of me and remove all the things he knew didn’t belong there.

By the end of the game all that was left were the clean plates that sat in the middle and the Kuan Yin head.

My home is not always spotless, but I try to have a ‘home’ for everything. A tidy house is a tidy mind. I generally limit the amount of time I spend in environments that make me want to blow my brains out.

I can’t help trying to problem-solve and neaten things, because it gives me a migraine very easily.

More about my favourite housemate ever “B” another time.

Decisions

Published March 23, 2016 by helentastic67

decisions_mid[1]

Decision

To make a decision, I was given the mantra in my teenage years that if you couldn’t make a decision for yourself, the decision would be made for you and you may not always like the results.

The funny thing about being depressed is you might struggle to make even the most simplest of decisions.

Some people just on observation, get stuck in their own ‘shit’ so much they can’t make a decision to save themselves.

Start with small decisions, things you have to attend to everyday. Then build up to the bigger, harder stuff. If you have serious chronic Medical conditions, make a damn decision. If there are options to try to improve those conditions that will give you the possibility to return life to some form of normalcy try them!

Wait: TRY THEM!!!

You don’t know, if you don’t try them.

Sometimes, making a decision can snowball and if you can fix the things that have held you back some of the other problems are easier to deal with.

Depression can lesson and life can be easier and happier.