Brain Injury

All posts tagged Brain Injury

Update on a Few Things

Published July 18, 2022 by helentastic67

Update on a Few Things

So, I have been intending to follow up on a few things lately, but I’ve been slack in my efforts to use speech to text. Some things are hard to say out loud.

I’ve been meaning to follow up on the bullying I received from the not-for-profit self-advocacy group I’ve been volunteering at for over ten years. I’m letting the dust settle on that for a little bit longer, but the baseline is that my time with them is going to come to an end soon as they took my blog link off their website, making such statements as ‘it’s not even about brain injury’. Clearly, they didn’t look very hard because I’m sure I stated in my profile its brain injury done differently. It’s a lost cause and it’s time to find a new tribe.

Add to this the Gaslighting I’ve been receiving from my mental health care provider. They have done very well at the opposite of their job. Ever wonder why I don’t name and shame providers? Yeah, now you understand.


I’ll unpack both things another time in more detail.

I often hope how I teach organisations to respect and treat me, is how they will continue to treat all their clients or patients. Some are slow learners and if they don’t learn, I take my funding elsewhere.

I have been doing too much as last Thursday I had a migraine that whipped me out for a day and another four of feeling seedy. But I now have injectable Tramadol in my home and no, I do not intend to inject myself.

Reasons Why “Reply All” Should Be Banned

Published May 23, 2022 by helentastic67

Reasons why all “Reply All” should be Banned

Years ago, I attempted to dissuade a group I was part of to stop using “Reply-All” in their befuddled state, some asked “What? Why?” It was a brain injury group so there’s that.

I mentioned there’s always one Numbnut, that hits “Reply All” top ask the original sender “Hey XYZ that’s great font! What is it?”

I’m not a PC User and even I know how to work out the font style. But in the meeting the Numbnut in question will prick up their ears and insists “It was a really cool font!” Someone else, not getting the gist of the conversation enquires what was the font? I mutter “Wing dings!” and a few laughs. You’re Welcome and another Numbnut asks (you guessed it) “what’s Wing Dings?”

For Christs sake! Write it down. You just got homework.

If you don’t know what’s going on in those kinds of meetings you gotta make notes, go home and do some research. One Numbnut had never heard about “Ted Talks”. Homework!

Meetings shouldn’t take this much time and I’m trying to not be doing my email at 1AM! It’s gotta stop and it’s because that’s when all my other chores for the day are done.

Hot off the Press 17th May 2022

Published May 17, 2022 by helentastic67

Censorship – The Next Exciting Episode

This week, I am following up on last week’s post and asking for your support for my blog and my intention to do brain injury differently. My question is “Is bullying OK?”

So, had a very ordinary meeting last Tuesday, trying to convince people who had not bothered to read my blog, that the blog link remains on their website (that features a disclaimer) for the group I’ve volunteered for 10+ years. 

A fellow-member and friend suggested if I wanted to have my blog appeal to more people, I should change it. To be blunt, I could write about brain injury but it’s not sexy and people don’t want to know anything about brain injury until it’s absolutely relevant to them.

I could write about risk-taking behaviour but you don’t have to drink, take drugs and try to drive a car and potentially kill people while you nearly kill yourself to get a brain injury. I’ve done none of those things and I have a brain injury. 

I am probably only alive because I didn’t do drugs, I barely drank. I found alcohol used to make me feel like my head was swimming. Probably because alcohol thins your blood and my AVM once diagnosed was stated as being enormous. So, I suspect its why I was feeling unwell I just didn’t have an interest in doing something that made me feel so awful.

That I don’t ever mention companies or organisations good, bad or otherwise, should tell you I have some ethics.

That’s this NGO (Non-Government Organisation/Not for Profit) thinks to bully me to remaining quiet for the bullying they think to visit on its long standing members and that it’s acceptable. Other members have been destroyed by its poor behaviour and so, if you are still with me? You don’t have to love everything I write or stand for, but if you have any appreciation for what I stand for please Like, comment (positively please) and share through your networks. 

My deadline to have support in my corner is 14th June, 2022.

Thanking you in advance and with much love and predication.

Like, share and subscribe…

Perceived Personality

Published May 2, 2022 by helentastic67

Perceived Personality

There is an understanding within the ABI community, with the elders (if, ….) to that end, I say this in non-medical terms.

If someone has a life before they get their ABI/TBI, after this event and the fall out and dust settles, so to speak. They will retain that personality they had before the trauma. If someone was a player or a slut (I know, harsh words) or if they were funny, or love certain things. They will retain those traits after their ABI.

It is different when someone young, under-developed gets an ABI/TBI and even after an ABI/TBI etc, etc, the time often after the trauma improves. Five, ten, fifteen, twenty years, etc down the track.

I often wonder because I’ve had my AVM (my ABI) from before birth. How this has impacted my perceived personality. Because I think I’ve developed my personality and quirks around and despite my AVM.

ABI – Acquired Brain Injury

TBI – Traumatic Brain Injury

AVM – Arterial Venous Malformation

Normal Friends

Published September 27, 2021 by helentastic67

Normal Friends

In my earlier years of having case management, I mentioned as one of my goals that I wanted some normal friends and contact with the outside world that didn’t constantly throw me in with people with brain injuries or depression/mental health, etc.

I mentioned it specifically like this as my previous C.M. had a tendency to favour the ‘Clubhouse’ their organization ran. I would joke that they literally did a drive-by, push the door open and shove you out! Exclaiming “Have fun!”

My monthly meetings with my C.M. went on and while trying to maintain my independence, find funding for the different things, refer me to O. T’s and all the ‘other’, more attainable goals finding ‘normal’ friends was always pushed to the side for more important and pressing things.

This new potential friend was occasionally mentioned to me and because I insisted on more details, I was assured she was witty and smart. I confess, I don’t have much time for slow, dim-witted people. 

What? My brain doesn’t have much time for. C’mon! Hurry the fuck up! I can’t help it. My brain is busy and Stephen Hawking I am not. But, over time, I was volunteered more and more info about this new potential friend. I had not been terribly keen as she was living across town. I don’t have the energy to get to the people I already know and love to go across town.

Are your spidey senses going off yet?

Mine have been from day one. I should point out, C.M. works like this. I self-referred. They come see you or vice versa, you sign contract, they get paid.

Everything I said I wanted and needed, which they said they could do, they fuck all did.

They did the easy things.  They only met with me as often as I insisted because I pestered them and because I’m fun and cool and amusing. Imagine, if someone isn’t cool or fun or can’t implement Pester Power?

That part of me is still in that childlike era, I do exceptionally well at Pester Power. So C.M. tried to shake me loose. “Hey? We haven’t done all the things yet!”

You realise, you sign that contract, they get paid and if you don’t keep on them, they can get away with never seeing you again.

So, the C.M. let slip one day, could I help the client with her rostering of carers? She couldn’t manage her roster, didn’t return calls, couldn’t schedule, etc. Could I help her with that?

So, she wanted me to do her job now?

People often don’t even realise I have a disability. Well, several really. So, they see me upright and walking and talking and smiling until one day I make a BOLD statement and people are shocked into a different idea of Helen’s normal.

Tuesday

Published September 20, 2021 by helentastic67

Tuesday

Had a crazy Tuesday this week. Now it’s Friday and I’m sitting at my fave café for what has become my new normal day here to lunch and write. It’s the Covid normal.

In my early days of diagnosis, I felt the need to explain my life was less Brain Injury and more normal and my first specialist explained I was a high functioning ABI.

So, Tuesday was a bit more crazy than usual. This is probably a good example of me being high functioning. Keep in mind, Helen is not a morning person.

9:15am – Usual carer arrives for Personal Care. She does all her chores and I do mine.

I make breakfast and sit to eat. (Slam down my entrée of pills)

Turn my phone on. It starts, the bells and whistles, texts and calls and messages. I don’t know why I need to go off grid on the weekend.

I call and negotiate with my young John to get me to my first of two appointments. He can squeeze me in.

11.45am – I’m meeting my Neuro Physio. He sits on the floor trying to stretch out my left calf and front ligaments.

I have been diagnosed with a clunky ankle. It’s an official medical term. It’s causing and adding to my knee replacement one day. It’s already nice and crunchy! (My knee)

So, he’s doing him. I’m doing me. I’m checking texts, sending texts, then I’m required to stand favoring my left side and sit, twist my upper body towards my left to help my leg and foot do leg and foot. 

To be clear, all this teases my brain. It’s not super fun, because my right-side brain is saying “you want to do what? Get firetrucked!” (Trying not to swear!).

And I’m dealing with one of my two agencies to fill a shift, the following day on the Wednesday.

It’s a 6-hour shift where I get escorted out, I do the things, we have lunch either out or at home and I set them chores while I scooter out to other appointments, they don’t need to take me to. It’s also when I fit other things in where I need muscles and things that I can do by myself or on P.T.

It’s a 6-hour shift. The texts from my agency go back and forth. Eventually, I’m offered 3 hours which I later describe as like putting a band aid on a bullet wound. It’s a great image, isn’t it?

I was responding that I could offer their shift to my other agency, as in the whole shift 6 hours. What pretty band aids on either side of that 3 hour. I need the whole 6 hours.

I mention via text, I’m in the middle of something and I need to be present in my appointments, but then I get a rather long shitty text stating they had spent 4 hours messaging other carers and clients to find me someone. It sounds like they think I’m ungrateful. The grumpy text ends with an apology for the text. I am now getting busy – this is eight days after I started.

Hopefully I can do it justice. But otherwise, could be, I didn’t get to read her whole message. I got the gist and immediately texted my other agency and if the person was not in the office, I rang them directly. 

When I rang, I could even interpret the pause and inner office convo that happened in the background. A carer they have been wanting to send me for some time, they were just waiting on an NDIS checklist.

I confess it’s been two weeks since that fateful day. So, while this may not flow seamlessly from the previous post, I hope you can keep up?

So, I text the agency who is choosing to do their job the hard way, that in the middle of two appointments I need to be actively present at. I’ll get back to them.

It does already look like I’m covering the following days shift myself another way. I flick a text to my other agency. In case that staff member wasn’t in the office that day, I quickly call.

“What’s that?” I’m on the phone while my Occupational Therapist, (OT) who I’m just meeting for the first time is with me. “No, I told her she could absolutely go pee.” Respectfully, that makes us friends for life.

I call the agency and I can tell exactly the conversation that’s happening in their office.

“Oh, send X, Y, Z!”

“Is that Helen? Just fill that shift!”

There is no better motivation than me missing a specialist appointment because their afterhours staff member fucked up my Monday morning. My Botox appointment was rescheduled for two months further away. Botox keeps my left toes from curling (I know. What?). Yes! Botox in my leg.

Anyway, yes. The NDIA survey has been completed and X, Y, Z can cover my Wednesday shifts until my other agency can cover it again.

After my OT appointment, I head out and call my Heidelberg taxi driver. Young John is best at this time and so is Sean! 

I hoof it to my far local pide dealer. Pide is not code for anything. It’s just where I get my vegie pide from. Another taxi driver has arranged that I can wait around the corner to make life easier. 

On the drive home (10-15 mins) I text the first agency. I confess I was pretty grumpy earlier and wished to call my support coordinator to growl at the agency because I just didn’t have the bandwidth to give the polite diplomatic response.

Yet, I messaged something along the lines of, ‘I appreciate how hard it is to fill shifts when my regulars are away or don’t have a weekend. Then something that I genuinely did appreciate her efforts. Despite that, rather than ring me first to ask if she could wriggle things so she could cover three of the six hours of my shift. Would it be enough?

Sometimes it is but this particular day, I had placed other things in around and in between the appointments that required wheels and muscle.

I did all of this with a migraine.

So, that shift was moved for a month or so to another agency. 

The following Tuesday I received a message asking if I expected them to cover my Wednesday. I had to remind them I’d moved it temporarily. This is what happens when someone tries to cover a bullet wound with a band aid.

Today’s Lunch – 13th March 2020

Published March 12, 2020 by helentastic67

Today’s Lunch

Good Mental Health Day

Apologies my foodie post was delayed this week. My apologies. I had a really shitty migraine. So, have not been out much this week. Happily, had a three-day weekend! Always makes me happy! Had the brain injury self-advocacy group on Tuesday, so started the day with a migraine ended the day without dinner, some hard drugs (Tremadol) and finally nailed part of my New Year’s resolution, got to bed before 1am!

At the brain injury group there were new members present. Another newish member described me as ‘Caustic’ I asked what she meant? Not offended I offered ‘Bitchy’, was acceptable, or ‘blunt’ I just like to be effective. I provided an example. She had introduced me as ‘really friendly and warm but caustic’ and she is probably right. I also bring the funny. Now, let me touch on the Corona Virus. The media is not helping and people are stockpiling flour, long life milk, medications and most importantly Toilet paper (I will now refer to as T.P.)

People need to calm down! Because I need my T.P. because it turns out to be a terrible time to be doing a liver cleanse. Taking my St Mary’s Thistle for my fatty liver, I can’t even give up my closet drinking as I don’t. Add to this the HRT patches I started on Saturday to help calm some of my peri menopausal symptoms gave me an early shark week and a shittier migraine than normal. Couldn’t even get through my chiropractic adjustment without being sick. The rest of my normal Wednesday stuff was cancelled. Home to bed!

Started to improve Thursday and still with all my usual appointments and crazy, hellonwheels tune-up, visit from the vampire (blood test!) and a trip to my podiatrist. And now I’m smashing out this post Thursday evening, the night before it goes live. While I’ve skipped a few meals this week due to feeling seedy from my migraine. I’ve a musical treat. I’ve just gotta get through Friday and Friday night I’m going to see a band. I actually loved this band in the 80’s when I was a teenager and the horrible week, I let Jamima cross the rainbow bridge back in 2016, in my neighbourhood. This time I’m going to see him at the Forum in the city. Here is a clip you can check out…….

 

This is way too short! Here’s another sample.

And lastly, two stories of the extremes of the attitudes and fall out of the corona virus. A support worker told me both of these from one of her other clients. This about a month ago.
1) While at the butchers getting her clients cat its meat. Yes, fussy cats down here. An older gentleman complained he couldn’t get his muscles because of this Chinese Thing. This was about a month ago. But did you gasp? So wrong! So, so wrong!
2) This other client went to her doctor and while in the waiting room chatted to a Chinese woman sitting next to her about art. She loves art apparently. When her name was called the Chinese lady thanked her. It had been the first conversation anyone had had with her for three weeks. I guess, I’m suggesting we need to do better? Wash your hands. If you have any Symptoms stay home and don’t buy all the T.P. Helen’s doing a liver cleanse! Your welcome!

Cheers,
H

Efficient – Part 2

Published January 10, 2020 by helentastic67

Efficient 2

Now, you might imagine having carers or to use their current tittle “Support Workers” is so easy (said no one ever). But you really should imagine it’s like having “staff” or running a busy café where people come for short shifts and someone else off site manages their comings and goings and they might work for several agencies that give them clients/shifts. Now, I’ve been doing this ‘shit’ for about thirteen years and it’s still not perfect.

I like being very efficient to make my life work best and normally the less times I have to attend to something, the more efficient it is. However, the more times I have to touch something to have it run smoothly the way it should because, it’s the way I asked for it the first fucking time, it’s always getting moved.

Of course, I have an example for you!

My carer should arrive on a Sunday morning at 10am for a ninety-minute shift. My main agency that covers all my PC (Personal Care) morning shifts has a few carers who are prepared to do weekend work, so they have outsourced me to another agency. Now, we know from Japanese whispers, the more people involved in relaying a single message, the results or the goal sets diluted and altered when your shift gets outsourced, it works the same way.

Also, because I’m not in the office rostering, but I’m on the cold-face (receiving service) I know more about the big picture. Also, because I make conversation with the carers, because they are in my home.

This particular Sunday, it was my mum’s 70th and family were converging from two different directions at my place at 12pm. Are you doing the maths?

They arrive at 10am, leave by 11.30am, I may eat ‘something’ small to get me through to midday lunch. A call to my main agency (let’s call them MH) during the week, told me she would be coming at 11am.

 

What? NO!

I rang MH and told them it had to be 10am because of XYZ. They rang the agency (let’s call them MC) because I can. They locked it in for 10am. Bingo, right?

Um, don’t be fucking ridiculous. On the morning, I woke early, got back to sleep eventually and kept waking, stressed she would arrive on time.

10am – I woke, no carer, it’s cold, so I stayed in bed to wait. 10.30am, BUZZ. My carer had arrived, late. Yet her roster states 11am.

I am of the understanding she sometimes has a catering order that needs to be filled. It’s rather ad-hoc so not consistent and I know this because people come to my home, so I get to know them.

As I have a brain injury, I often find people underestimate how switched on I am. It’s a misconception all brain injured people must be stupid. We are not and I’m speaking for all people with brain injuries. You’re Welcome.

So, I know when this shit happens, I am fully aware of who did what, who didn’t and who just said they would fix the roster and never intended to and the fact that I know this is all very taxing too.

I’m an overthinker, I think its anxiety and I think part of it is being a high functioning ABI. And the majority is my need to be efficient, because why is it so fucking difficult?

So, every day, there are examples of this where I need to touch on something to get it running smoothly.

 

Groundhog Day

Published December 30, 2019 by helentastic67

Groundhog Day

It fucking happened again. I know I started with my favourite word, but you shouldn’t assume there will be lots in this blog post. I’m just emphasising the fact that it’s like a new round of people are coming into my sphere, (didn’t know I had one like I’m a planet, right) but every now and again, I’m somewhere I wouldn’t normally be and new people will ask me ‘what have you done to your arm?’ Every fucking day, I leave the house and I generally mention it’s because of my brain injury, because it’s the perfect way for people to learn sometimes Brain Injury walks and moves amongst them like a normal person.

Sometimes, brain injury looks like this hot mess that I look like. So, I tell people, depending on their response I might, no will follow it up with my standard follow-on that my brain injury is NOT SELF INFLICTED.

Because, the second assumption is that all brain injuries are and I will describe a little more info. So, it’s understood how I have had my AVM (Arteriovenous Malformation) all my life and didn’t know it until I was thirty-four.

Then there’s the next round of questions. Well intended, sometimes the way I respond, I hope they read my mood correctly and stop asking questions.

Maybe? No! Don’t be ridiculous.

A few weeks ago, at my favourite café where I go because, well I love it. The staff have gotten to know and I don’t get treated like a weirdo/freak and I don’t get the questions about ‘what have you done to yourself?’

I was in the room, I’m a permanent fixture. Two men came into the room and asked me straight away. The question, don’t ask me to repeat it. And I did in layers of –

  1. Brain Injury
  2. Not self-inflicted
  3. Had it all my life, just didn’t know
  4. Bullied in a stressful work environment

After he had taken all of this in, I realised I’d disclosed way more to a complete stranger than I normally would have and it had all happened so naturally, I hadn’t stopped (he didn’t look horrified), but I felt a little raw and vulnerable.

I had a moment of weakness and almost cried. He obviously realised and he leaned forward and grazed the back of his knuckle against my cheek and told me “You’ll be OK”

And I was really surprised. Now, I don’t want to need to remind people however, if you made it this far? Please hit “LIKE”

Hate feeling needy, but we all have needs and, in this case, we all need validation.

Failing

Published November 29, 2019 by helentastic67

Failing

I am part of a Brain Injury group (if you have followed special links and such you would be able to learn the things these groups have achieved) I feel a little like everything I’m trying to achieve is failing or falling short, because I’m being undermined or sabotaged by  people who do not understand the meaning or importance of returning a call, a message or email (is it just me?), is it that other people with Brain Injuries or one other people are not as efficient as I am?

Think I’ve worked this one out.

BUT, WHAT THE FUCK! (Feeling frustrated) happened to common decency that people are all so busy they can’t respond in a timely manner?

I’m fucking busy, they are winning at LIFE ONE HANDED! I’m nearly ready to give up on quality control and giving a fuck, aren’t I?

I just don’t want people to slip through the cracks and then have to be patient while they complain how bad life is.

When do I get to care less? Unfortunately, that will mean I will feel like I’m failing.

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