Acquired Brain Injury

All posts tagged Acquired Brain Injury

Mother

Published June 7, 2017 by helentastic67

Mother

Mother

How’s your mother? I always get asked by my carers… My mum who was here for less than 24 hours, last week to smash some appointments and things.

My mum is really the only family member to support me and she also manages to be my biggest critic.

So, it’s often somewhat tongue in cheek I reply with a smart mouth “she was alive when she left and so was I”.

Smart mouth

My mum and I have come a long way in the last ten years, in the early days of my disability, she was mid 50’s and she would come down often once a week just to take me across town to my physio and OT appointments.

Mum lives about 3 hours away in the country in a lovely isolated valley where there is NO MOBILE RECEPTION and when I go home for Christmas, mum and my younger sister cannot remember their internet password. So, for me THERE IS ALSO NO INTERNET!

No internet

Admittedly their internet is so little and so slow, it’s better to just let emails pile up. I’m less inclined to lose my mental ‘shit’ and want to kill people.

My internet is fast and reliable at home. My mum reminds me every time she visits when she claims “I just detected 400 emails”.

Fast internet

Yeah! She only visits for my fast internet, I don’t mess around with internet or computers when they don’t work, I have visual images of Jackson Pollack paintings. Anyway, I digress as per usual.

It is rather typical of family members when they are carers for people with brain injuries and disabilities to verbally spar with each other.

Most people with brain injuries I’m sure it’s like torture and torment because they lack the verbal skills or mental capacity to give as good as they get.

My mum probably doesn’t realise she should count herself blessed, I have a smart mouth and deliver her a sharp retort at times, despite it offending her. Because the early years I used to bite my tongue until I realised Passive/Aggressive didn’t help me.

Smart mouth 1

Nothing was going to change if I couldn’t let it be known. Clearly, we have had many opportunities for a difference of opinion, on this whole topic.

But what can you do?

Mum 1

 

Acquired Brain Injury Humour

Published February 10, 2017 by helentastic67

abi-humour

ABI Humour

I imagine most people with a serious medical condition or a disability will find some solace in humour.

I confess I love the term “Wrong”, because it adequately covers my type of humour.

I often have a quick wit that people don’t understand or appreciate.

The other times my humour is ABI related and completely “Wrong”, it’s how I like it.

Here’s an idea of wrong……….the one I’m okay with putting on my blog at least.

I sometime get hay fever. Luckily most years at Springtime I haven’t been getting hay fever, but the last time the conversation came up at an ABI Social group I was going to, I commented; “Yeah! Haven’t had hay fever for years, but this year I’ve blown my brains out!”

abi-humour-2

The facilitator looked at me a little startled as I am one of the less “Brain Injured people of the group.” So, I guess I’m saying I get held to different standards.

I stopped “What? I’ve been blowing my nose a lot!”

I give a frown and a bit of a shrug and move on.

There are times I refer to the other “thing” which also includes a reference to Jackson Pollock, but not today…

jackson-pollock

VATT/Commodity!

Published September 16, 2016 by helentastic67

vatt-2

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!

  1. Can they get their current businesses running properly first?
  2. 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.

group-home-1

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.

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!

Instagram-c5c344

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

 

 

Auditory

Published August 8, 2016 by helentastic67

Auditory 1

Auditory!

Have been having many auditory issues of late. While my stroke/not-stroke has affected the left side of my body from my toes to my face, my brain still functions very sharply. I manage my own appointments and day to day stuff, I pay my own rent and bills and I negotiate much of my own services and whatever! My home is clean and tidy (mostly) and I may be one handed, but I’m always moving around the unit with something in my hand keeping everything in its place.

I am considered a high-functioning ABI! It’s because I’ve had no trauma, which is rare! I’m not saying I’m special, but I am “she says tongue in cheek!” High functioning for me is because I’ve managed to avoid trauma to my brain. No surgery (cutting) and my memory has remained intact. I consider I have a very good memory, long and short term. My mum would disagree, but she would be wrong.

But lately my sensory issues have made me a little fuzzy and it’s starting to bug me.

auditory-training

I can go out and do my own shopping, pay my own bills, do that ‘stuff’ and even reschedule appointments ‘on the fly’ if I’ve got a busy schedule or am early for an appointment and have a little wriggle room but it can all go to shit when someone’s around re talking in my left ear or distracts me somehow.

My concentration becomes harder to keep on track, my self-processes and coping skills can all go to hell in a second.

And no matter how much I plan ahead to have things go smoothly at the end of the day from that moment on, I’m going to get a migraine.

 

Dear God

Published July 29, 2016 by helentastic67

 

stumbling_block_-_how_much

Dear God!

Dear God! And I could say ‘Dear Fred!’ but that might be confusing. Sometimes when life is too hard and you have thrown me one too many hurdles in life and I can’t take it anymore. And all I can do to make my point is to hold people to ransom until I am heard and someone helps me!

Anyway, this was not how I wanted my next post to start, but it seems the best way to tackle the topic of some ‘shit’ that went down today.

Some people may think my disability is not as bad as theirs or be irrelevant because it’s just a brain injury! Or because I don’t seem physically challenged by my disability! So to explain;

Monday, I found a new ‘fucked-up’ way to pull muscles in my back and all I was trying to do was lie down on a massage table face down! Yes! Really!

While I do manage to get out to appointments one way or another and I manage to get myself home usually in one piece, it comes at a price and can take its toll and definitely more of this “shit” later because right now this is not my point.

I still need to advocate for myself at times and when I’m smart enough to know I’m getting a raw deal from my ‘Service Provider’ and they should be doing better. I dread to think how they treat others and that’s when people like you ‘God!’ don’t have the ability to cope as well.

This is why I advocate for people with A.B.I’s.

Today, while at a Brain Injury Self Advocacy Group’s monthly committee meeting one of our new members ‘Fred’ (we will call him) burst into the room just as we were finishing.

Let me premise this by saying; Fred was having a much shittier day than I was up until that point and his multiple A.B.I’s proving to be far worse than mine. He was very angry and had been to court, hence missing the meeting.

He blasted us with random facts about his situation that we obviously needed to know. But, for all his many issues we work largely as a referral/networking service and while we tried to recommend some Advocacy groups. He told us they had been less than helpful and that is me paraphrasing what he actually had to say about them. What he should have said was they had been less than helpful to him and I imagine if he dealt with all his situations and troubles in life the same way, he informed us today that we were not of much use to him.

After about 15 minutes of dealing with Fred’s fury, I had to leave because I started to feel sick. I really respect Russell Brand when he has been known to say;

“I don’t have a drug problem; I have a dealing with life problem!”

And that is the problem with Mental Health and that is when dealing with Chronic Medical and Health issues, the thing, the thing & the thing that lead to the serious mental health issues it’s hard to cope with the shit that happens and how to deal with them, so the already fragile mental health doesn’t get worse.

Now lastly, I don’t know that everyone followed this post and while the intention, the meaning and the conclusion, my point or at least a little out of it.

Now for a cuppa T.

stumbling

Radiation

Published July 25, 2016 by helentastic67

Face mask 1

Radiation!

For me I’ve been aware of everything that
has ever happen or
been done to me. I’ve been part of the decision making and
conscious throughout
treatment etc. Some people don’t have that
luxury.

They might be in a car accident or have a
stroke and they
only become aware of this when they wake up in
hospital. Or even after they wake from a coma. That would be very ‘Ordinary’.

My treatment was only about 30 minutes every
day over the
course of about 2 ½ weeks.

Mum and I caught a bus across town to my
hospital and within
an hour mum and I were on the same bus heading
home.

Day one! Turned up to wait for my
appointment.

Think it was about 8am! And it wasn’t long
before a nice
nurse was standing in front of me with a medicine cup held up
with a little white pill in it.

I’ve never been one to just reach for
medications and
considered I wasn’t sick, I was here for
treatment. So, I questioned the need for this medication.

I looked toward my Specialist who was the
Radiologist/Oncologist
who just happened to be coming out of the consultation room
with other Neurosurgeons,
etc and I gave him an appropriate questioning look.

And that was the first dose of the steroid
‘Dexmethazone’ I’ve
ever had.

The treatment was delivered with me lying on
a table and my
head bolted to it with a mask.

This is someone else’s mask (mine was
destroyed) and after the
treatment the mask would leave an itchy honeycombed pattern
across my forehead. (Sexy)
that would take some time to go away. Making me very
self-conscious.

The first night I recall I didn’t sleep. I
may have managed to
get to sleep for an hour or 2 before the alarm went off and
I had to get up and
repeat the process…

Face mask 1a

Day two! Of my treatment the little pill was
presented to me
again. And I asked if I really needed
it?

I explained I hadn’t slept all night. It
was a precaution for if I suffered any brain
swelling. As I had not had a headache after my first treatment I managed to evade more steroids during my treatment faze.

That night, no steroids, slept like a baby.
Overall the
treatments were no drama what so ever. I was very
tired.

Didn’t notice anything unusual until a few
days after my
treatment ended.

At the time I had a boyfriend and some
weekends we has his
daughter stay with us. She was about 4 years
old!

My scalp had been itchy and as it was a Sunday
morning I took
my hair down to wash it and found some mattered bits at the
back of my neck. I
brushed my hair in the shower when I had conditioner in it.
This has been my
practice since I was about 16.

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