Acquired Brain Injury

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When Disability Becomes Embarrassing – Part 4

Published September 28, 2018 by helentastic67

When disability becomes embarrassing 4

When Disability Becomes Embarrassing – Part 4

Fred Gets Taught a Lesson

The final day of the conference everyone was tired, but content they had gone, conquered and achieved what they had gone there to do.

End of conference

I came across Fred and in a casual setting he approached me to apologise for the previous night at the dinner and throwing me under the bus in front of everyone.

Fred apologizes

I told him “It’s OK, because I had been about to tell him to go outside and call all his friends and family and loved ones and tell them how much he loved them!” because I was going to kill him.

Im going to kill you

He seemed to sober immediately and to confirm he wouldn’t do it again. I told him it would be OK because I could always claim brain injury to “get off”.

Blame brain injury

I left him with a friendly pat on the side of his arm, but I think he also knew not to do it again. It should be a warning to others.

Dont mess with me

DO NOT MESS WITH HELEN.

Yet to kill anybody, but there’s always the first.

Always a first time

When Disability Becomes Embarrassing – Part 3

Published September 24, 2018 by helentastic67

When Disability become Embarrassing 3

When Disability Becomes Embarrassing – Part 3

Stacey

The following day, I went looking for a particular speaker and topic at the conference, that others in my group were looking for.

It was something about “sex after ABI” for example. I find the right room and joined some fellow guys I already knew. This won’t be awkward right? Since he had given me his business card, the night before.

Sex after ABI

The guys I knew and I looked around thinking we were in the wrong place because it seemed everybody else in there were “industry-types” service providers, whatever.

Industry Types

Then in came the presenter.

That’s right, Stacey!

She started by recognising there were more industry-types there than she expected. I suspect she had wanted to empower people with ABI’s that sex could still be a natural part of life post ABI.

Sex is natural

Here’s an example:

Stacey2 (not related to Stacey) had, had a stroke. She had her stroke while having sex (a little rumpy, humpy) with her husband.

Stroke during sex

There was a moment of sadness in the room when we heard this. Apparently, the married couple had a very healthy sex life before the stroke.

Healthy Sex Life

So, when in hospital, when she was able to get up and move around, they attempted to have sex in the hospital.

Sex in the hospital

Must put this one on the bucket list.

Bucket List

We were made to understand it was perfectly normal and for them vitally important to be able to continue and maintain a normal sex life for them as part of her rehab and existence.

Sex in Rehab

You might ask how they did this?

Stacey informed us they did it standing in the bathroom with her holding onto the handrails. And success apparently.

Sex in the Bathroom

Now, Stacey 1, asked us a question. She asked us, what happens when we reach climax? (or orgasm). The room was dead silent.

What happens when you orgasm

I piped up,

“What? Your muscles tighten?”

Stacey was impressed and said I was correct. The industry-type people checked me out wondering how I knew.

How do you know

Exactly!

So, I struggled a little and said,

“It’s been a while, but……”

It's been a while

The following day, at the end I walked Stacey out because I had enjoyed spending time with someone ‘normal’ as you do surrounded by numpties all the time. She thanked me for being her “Conference Friend” Sad face…

Sad face

Stay tuned for the lesson I gave Fred.

When Disability Becomes Embarrassing – Part 2

Published September 21, 2018 by helentastic67

When Disability Becomes Embarrassing Part 2

When Disability Becomes Embarrassing – Part 2

WTF!

And he thrust a microphone into my face and had sweet Jesus! What just happened?

I looked at Stacey and pointed a finger at her saying “I’ll kill you later!”

I'm gonna kill you

I think she already realised her error. Fred would learn later the following day. Sometimes I’m very grateful I think quickly on my feet, quite literally and despite my ABI I have not been slowed down too much.

Quick Wit

Oh, Fred had or myself, I can’t recall, had suggested all those single guys looking for love to stand up.

Looking for love

Are you feeling my pain right now?

I started to speak and address the room. I asked for all the guys with an ABI or anyone not with-in a stones throw of Melbourne to have a seat. I explained I have an ABI and I couldn’t for see two people with brain injuries residing under the same roof successfully as I have proven on more than one occasion and as I would eventually like to see a relationship, I am in the future to be.

Dating

I confess to say; many seats were taken and the room got rather still and quiet again. I finished my ‘forced’ situation by saying “being single and dating with an ABI/disability is not easy.”

Dating isn't easu

I think I thanked everyone for participating in the brief experiment. I handed back the microphone to Fred who looked a little deflated.

Deflated

He announced again, that there were single ladies at our table if anyone wanted to come and introduce themselves. Some did.

Introduce yourselves

And that someone was someone I knew from the ABI GROUP I WENT TO IN Melbourne. Now, he doesn’t live in Melbourne, he walked around the table and delivered all the hot chicks (OK that’s exaggerating) a business card.

Business cards

I looked up at him and growled ‘What are you doing?’ and while a bit older than I, I would not want him dating my mother.

Worst date

So, you might wonder about Stacey? Yeah, she wasn’t single, but the next day.

Stacey

When Disability Becomes Embarrassing – Part 1

Published September 17, 2018 by helentastic67

When Disability Becomes Embarrassing

When Disability Becomes Embarrassing – Part 1

There are many times my disability has been embarrassing or humiliating. However, this is one of those occasions where I was standing in front of a large room of people with a microphone shoved into my hand and all I could think was – “FARRRRKKKK” (you will forgive me for that shortly)

Microphone in hand

Then I was thinking, rather swiftly I might add. “What just happened? Who did that? Where did they go? Help! Now what? How do I get myself out of this situation?”

What just happened

Now, to back up a second, I will put this situation into perspective. I was in Bendigo a few years ago at the ABIAW (Again: Acquired Brain Injury Awareness) week event. I had travelled to Bendigo from Melbourne with my mum, who had driven three and half hours to get to Melbourne, so she could carpool others around also from the ABI Group in Melbourne, I was part of.

Carpooling

So, mum was there also and we shared a room in the hotel we all stayed at.

The first day was a long one, lack of sleep and we went to sessions and heard people speak, we mingled, we ate, we collectively drank bad coffee and the first night we gathered at a dinner to mingle and socialize.

Mingle and Socialize

Now, mum and I retired to our room, like many others for a break before we went to the location for the dinner. Needless to say, my mum and I are both on a different page when it comes to tiredness.

Stubborn

I like to be early to be on time. My mum is much more lenient and we are both very stubborn on this.

By the time we arrived, the people we knew there from our group in Melbourne were spread over two big tables and there were NO SPARE SEATS and no one had thought to save us any.

Crowded table

The guy upon entering, suggested we could join another table to make some friends or sit at another empty table on one side and that table would likely fill up soon enough.

Single Girls Table

I dubbed it the single ‘girls table’. Oh, hell why not?

Here’s where mum and I differ. I was completely okay sitting there out in the bitter lonely cold, but mum wanted to join another table. Soon enough a younger ‘normal’ woman joined us and I enquired if she was single or not.

Matchmaker

Sometimes, I can be such a Nona. Nona’s very prone to want to match you up with someone’s son/nephew, whoever.

She claimed to be single (turns out that was a lie), she soon decided to find secure and encourage us to abandon our single girls table and join another table with conveniently three empty seats. This table was front and centre.

Front Row Seats

I had already had a comment about the man facilitating and Master of Ceremonies. While it wasn’t bordering on sexual harassment, it might have been a bit wrong.

Master of Ceremonies

“Let’s give single girl a name, Stacey and let’s call him Fred. Again, Fred gets such a bashing, doesn’t he? So, Stacey spoke to Fred and as she returned to her seat Fred came up to me and…

Deep Breath 2

Wait… Deep breathe,

Deep Breath

He announced to the room there were single ladies at the front table and were there any men looking?

To be continued

To Be Continued

Blame

Published January 29, 2018 by helentastic67

Blame

Blame

I’m not sure if it’s just Acquired Brain Injury (ABI) or the whole disability, but I find I get blamed for all kids in my family or even just my home. I’ve had some new carers of late and one is my new Saturday/Sunday lady. She wouldn’t come for less than 90 minutes, so I figured I could make it work by giving her some odd cleaning jobs.

Clean fridge

Nothing major, but on a Saturday, I’ve asked her to clean a shelf in the fridge (it will be all clean eventually) and other things that rarely get done (cleaning the cutlery drawer or cleaning the front of the kitchen cupboards). The second Saturday, after washing went on the line, I know she didn’t do any of the other tasks as she had found the new foodie magazine on the dining room table.

Magazine on table

She commented to me I really liked cooking and Donna Hay’s recipes were easy. When I remarked to my mum, she said it was my fault, I left the magazine out on the table.

Donna Hay

The message was rather scathing, I didn’t know where else I was to have put it, in my own home…

It’s my home, I don’t leave out bills, cash, bank statements. I’m wondering if anyone else experiences this?

I can’t wait until I get my next Neuro psych, I’ve had countless, but my mum is insisting on being there next time. (pointless/counterproductive) and she wants to be there for the debrief.

Psych

She says it’s so she can better understand my ABI, but I know it’s going to lead to me better understanding my behaviour and then changing it to suit the family.

Behaviour

Nearly fell over on the tram today, Yes! It was the day I was carrying that darn cool-bag, but still number 1.

Why do people who don’t fit the criteria to take up those seats with signage stating they are for people who are elderly, disabled or pregnant. While I’m here, can pregnant ladies not sit in my seat in their first trimester. Please! You just look a little fat, sorry. Save it until you’re nine months pregnant.

Disability seating

Today, I wriggled up by asking a young woman to hold my walking stick, being weighed down by both my bags. It took an effort to push myself up.

I put my hand on the wall behind the driver’s cabin and had to balance so as not to fall backwards when the tram lurched forward. I stumbled and a woman behind me to the right, screamed out that I had trodden on her foot.

Stepping on toes

She dropped the F* Bomb to describe how much it hurt. I muttered an apology, but I had struggled to remain upright and had thrown my right hand up and grabbled the headrail. The woman holding my stick looked at me concerned, I think she wondered when to give me the stick and I had to wait for the tram to stop. I will often lean my shoulder or hip against that wall of the driver’s cabin to get my balance.

Falling over

I had to ignore the woman who complained I’d hurt her foot. I had apologised and I think her feet weren’t anywhere near her seat and she hadn’t realised how precarious my situation had been nor did she care.

I did notice she didn’t look like she had any of the pre-requisites of taking up those seats.

I don’t know how I’m supposed to fix this situation…

fixing it

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.

 

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