Brain Injury

All posts tagged Brain Injury

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.

Today’s Lunch – 9th October 2019

Published October 9, 2019 by helentastic67

Today’s Lunch

Good Mental Health Day

Full disclosure, day lights savings began this weekend past and Sunday around 3pm I was ready for the week to be over already. A busy week again ahead.

Tuesday, I was at the Brain Injury self-advocacy group again. Highlight for the day was when one hapless young man asked me “Are you PREGNANT?”
Yeah, he’s dead now!

Yeah, I then had the pleasure of explaining to him the effects of being this age! I’m referring to being peri-menopausal. I explained to him a side effect of being this age is either you lose weight or you gain weight. So, I actually told him I was not pregnant. I was just fat! I think that question is up there next to asking a woman how old she is. You don’t!

FYI, I’m 46 now and by the end of the month I will be a year older. I’m fine with getting older, I’m just looking at things I should do so I’m another 25 years I don’t look back and have regrets of things I’ve not achieved.

Because Wednesday is meant to be my mid-week foodie post, let’s have some food, shall we? Today’s offering is an Arancini Bolognaise with side salad and medicine!

 

 

 

 

 

 

 

 

 

And here’s a nice sign in Clifton Hill I found yesterday in my travels. Your welcome!

I’m also going to start mentioning TV Shows I’m watching. I’m watching season 15 of Grey’s Bit’s. (Grey’s Anatomy). Season 3 of 13 Reasons Why and my I have to get out of the apartment and go do Person show has been The Kids are alright. A nice flashback to the 70’s! I do watch things way past they are released but it’s because I watch sooooo much TV.  Meredith Grey is my Spirit Animal.

Family – Part 3

Published March 1, 2019 by helentastic67

Family Part 3

Family Part 3

Now, it’s a week later since I wrote the previous post, so having lost my train of thought, forgive me if this post seems disjointed. It seems that many people would claim their family is fucked. (had to be said) However, brain injury and disability brings out the worst in families.

Family and brain injury

You like to imagine, families can put aside their own issues to rally around the person with the shittier situation.

But, No! I have family members that don’t understand my brain injury, don’t want to, or just figure they will get on board ‘Team Helen’ when the only team player (my mum) on Team Helen is no longer here.

Not team Helen

My mum is almost seventy now, I love her so and I don’t think it’s fair my much younger sister be expected to take over one day.

My father, who I also love and respect because he’s my father. I only see once or twice a year because I make the effort when in the part of countryside near where he lives. I can never stay over at his house where he has plenty of room, because I’m not having my father help me after my shower. Seems a fair compromise.

Shower

If my father has been to Melbourne in the last fifteen years, it doesn’t occur to him to visit and I’m the only daughter of three that has regular contact with him.

I think my family are all in their own world and my mum is the only my family member to spend any significant time with me, to solve problems, do forms or paperwork and now she is older and because her memory has been affected by a rather lengthy medical procedure, if she starts something with me, but takes it home to complete it. It’s not getting done.

Problem solved

She will have every reason under the sun for why I can live with a half-baked solution even if it’s me being $30 short on my income for a debt I rightly don’t have, and she is happy to keep calling every 3 months when the government agency must be contacted to have them not take any more of this from me, but this is how it is. It’s easy for family to ignore what I need because they don’t need those things. They will offer solutions that don’t consider the big picture.

Family

I’m the only person who lives where I live full time and sees the situation in its whole. All the fall out if something is overlooked and the changes to my environment that may impact my health and home. (Referring to build up of moisture in my home from wet laundry or even just if I buy the wrong kind of clothes dryer that leaves more humidity and moisture into my environment) And just how exhausting it is every single night in the colder months to re-hang my washing inside on other racks so they can continue to air-dry inside.

Air Drying

Winter is approaching and it’s looking to be my second winter here without a clothes dryer still having not recovered from buying my front-loader washer a year ago outright.

Not recovered

Now, I’m sure this subject is far from covered, but I’m sure to circle back at another time.

Today’s Lunch – 5th December 2018

Published December 5, 2018 by helentastic67

Todays Lunch

Today’s Lunch

Good Mental Health Day

As per usual, just when my Wednesday settles back into a comfortable routine there is a spanner thrown into the works. If you need a reminder, my Wednesday used to completely revolve around lunch at my favourite cafe followed by a short walk to chiropractor then tramming it back to acupuncture close to home then a hearty walk home. But because one of those things relocated from Clifton hill away from the tram route that I rely on. I would catch taxi’s however I am lucky young John fits me into his schedule and doesn’t charge me, in his words because he says he’s a “decent human being”, and I otherwise cannot afford to do taxis and the NDIS expects me to Uber. Hell NO! So, I started getting a carer for a rather lengthy shift just to get me to my standard Wednesday appointments.

Normal Plan

Just pointing out I don’t need handholding for 4 hours but here we are and you may wonder about this “red-tape” I’ve mentioned previously in regards to funding for disability? I learned yesterday the NDIS has decided I can’t use core supports (fancy word for carer hours) to cover the mileage for my carers. I will now be billed for that separately. Only .80cents a kilometre, but if you add it up for the year? Ouch! After consulting the lovely Noelle, my blog administrator and the person solely responsible for my memes, her son also a client of the NDIS recommended I have mileage written into my service provider agreements.

Red Tape

My other solution is to only use the providers who don’t charge for mileage. My Friday chick who takes me shopping claims hers I believe on her tax, which makes me favour her for community access shifts. Are you picking up my subliminal messages of all the new names and terms for things under the NDIS? Yes, let’s recap, shall we?

Service Providers – Companies that provide carers or other needs funded and registered with the NDIS.

Core Supports – The name given to funding allocated for hiring person carers or support Workers.

Subliminal – Like, how I’ve been sneaking it into your minds that not all brain injuries are the same.

The general consensus is that all people with brain injuries sit in a corner and drool without conscious thoughts and you are getting it that I don’t have that kind of brain injury. Nailed it!

Brain Injury

Also, today is different again and not getting to my favourite cafe at all. Instead going to a free screening of a film called Defiant Lives.

https://defiantlives.com/

Lucky for you I managed to get a quick coffee break last Friday in between missions and my Friday chicks, really should call her my Girl Friday. Had this delicious little treat. It’s half a lemon tart and medicine.

Lemon TartLatte 1

 

 

 

 

 

 

 

 

 

I may squeeze in a medicine at a more local cafe close to home before I get home. To be continued……….

Latte 2

Oh, and here is my first calla lily out on my balcony garden. Only planted them a few months ago.

Calla Lilly 1Calla Lilly 2

 

 

 

 

 

 

 

 

 

Cheers,
H

Wonderful Wednesday 1

Confession

Published November 19, 2018 by helentastic67

Confession

Confession

Now, this may come as a bit of a surprise and I realise I’ve yet to do the ‘everyday person’s’ explanation of the difference between TBI/ABI/MY ABI/AVM so presuming I can keep it short and sweet (when have I ever).

Difference

AVM

 

 

 

 

 

 

 

 

 

I’m lucky I’ve not had trauma to my brain, I’ve not been cut into (not my brain anyway). This has allowed me the ability to retain a great many things. Memories from before breakfast today, my greater independence financially and my ability to plan and execute. All to which helps me stay independently living by myself. Kapish (I think that is Italian for ‘understand’)

Kapish

However, I think all of the above might work against me sometimes, when dealing with (is there a polite word for this? Anyone?)

INCOMPETENCE

Incompetence

Sweet Jesus!

No really, this week I’ve been asked at a train station if I was staff, and a staff member in uniform had just been talking to me and then this incompetent woman came up to me claiming to be doing a ‘survey’. FARK

Incompetance

What? I’ve gotta do your job too now?

I didn’t get enough sleep last night and by the time I left my chiropractor, my left eye was hurting (that’s my version of a migraine these days, hurts like hell, but allows me to keep getting around to do all my “things”) WHERE ARE MY DRUGS? I left asking the receptionist who was on over the weekend. Most good chiro’s if they don’t fix the problem in that visit and you still have symptoms the following day, they will see you again ‘free of charge.’

Where are my drugs

I was told the two girls (who own the practice) are away for Easter. I enquired who was covering? The Associate? The Associate, is a lovely younger guy I can bond with over “The Walking Dead” and GOT (Game of Thrones) Her reply – “Oh, I don’t know, I haven’t asked him yet.

Receptionist

Do I have to do everything?

Do I have to do everything

Rehab – Part 4

Published October 29, 2018 by helentastic67

Rehab Part 4 2

Rehab – Part 4

Case Study – Part 2

In rolled the stretcher yet again and again the same transport guys. Number four was sitting up on the bed and she was an elderly lady and truly the poor thing. She had a black and redeye and a hand was all banged up and she needed help to move to a chair while they prepared her bed and the guys and nurses did their handover.

Roommate 4

If you had met this woman in the street, you would think by the look of her eye and hand, she had been mugged in the street for her handbag.

Now, you know I don’t normally mention names, but in this instance, I’m going to because I must. I greeted her warmly and sked her name, the transport guy said “this is Elizabeth” she scowled some and said “it’s Betty”. See, kinda had to.

Betty

I said hello and the guy mentioned the weirdness of the older generation having one name and going by another. I just said “That’s what they do.”

My grandfather was always Jack. He has gone to God now, but when I visited him in hospital years ago after his triple bypass, I was embarrassed to learn he was actually John. WFT people! I never knew.

Anyway, back to Betty.

The arrival of Betty really settled our room. We were a very sociable room. That was my fault apparently, but what can you do.

Betty as a case study (so, non-clinical/medical terms) goes like this. Early eighties, had been in hospital over Christmas for a hip replacement and as this all happened around February, she was just about to go home when she had a fall. She landed on her knee, her hand and obviously her face.

Falls over 1

I did comment to her when she first arrived that she looked like she had been through the wars. She had actually, the second World War, but that’s another story and not mine to tell. Anyway, Betty settled in, in the bed closest to the door next to mine.

I gave her the induction and introduction of the room and like everyone else, when she asked me what was wrong with me, (why does everyone ask me that?) I pointed to the cast on my left leg, but said “Brain Injury”. You know it led to a longer explanation, but that was later.

Brain injury

I should mention, the day I arrived in rehab I had more visitors (nurses and hospital staff) than I think I’ve had friends visit me since getting my disability. Which says much about both friends and hospitals.

The lovely Betty, had a finger she had mangled in her fall. It was her ‘bird finger’. Luckily, she had not broken it, but it was very swollen and sore. The doctors would do their rounds and ask her to straighten it. When she could she effectively gave the doctors The Bird.

Betty giving the bird

Now, my grandmothers died when I was young and while I’m the age of Betty’s daughters, I felt like she was a grandmother I never had.

Now, I think you all realise I’m very cheeky and being around Betty, I got to turn it up a notch. Betty had, had to move into a nursing home early, on account of her husband’s dementia that had gotten to the point where if not contained, he would wonder off.

Grandmotherly

She was living in a suburb called Sunbury, to which I told her my nickname for the suburb was Scumbury. I didn’t make it up, but I’m still using it. It’s the Australian way, I’ll do a post one day to explain. Again, another day.

The nasty bruise around her eye, they gave her some cream, which stung. So, I introduced a nurse and Betty to my Arnica. When the doctors commented the bruising was going away and they would continue their cream for treatment, Betty tried to tell them it was my cream that they were using. The friendly nurse joined in our secret by reporting they would use some more of ‘the bad cream’. We all knew the nurse would continue using my cream.

Arnica

When in hospital, your medication is kept in a locked drawer beside your bed. (not all of them, but most of them) They dish them out into little plastic cups and while I’m quite competent and manage my own medications at home, they weren’t familiar with any of the alternative brands and pills. Often relying on me to do the, one of those, one of each of those, two on those and that one. I collected the little cups, I didn’t have a reason, but they sure came in handy.

One night early on in Betty’s stay, I was sitting in bed with my curtains drawn (we all did) and I heard this weird “whooshing sound”, more than once and I couldn’t work it out. I asked Betty if she could hear it too? She said it was her, she was sending emails on her phone. See! Can you see why I disclosed this woman’s identity? She’s my kinda people. Very tech savvy.

Plastic medicine cups

Those cups started coming in handy also, as when she went to bed, I would go stand beside her curtain and piff one over at her. Yes, you heard me and another under her bed, I would get a giggle out of her and do another until she sternly said “stop that”. You know I followed that with another for good measure. Oh, good times.

A councillor/Social worker type visited Betty once and I saw her approach Betty who was sitting on the chair beside her bed. The young lady, half squatted in front of her, so it looked like they were on the same level. Now, she could have pulled up a chair or even sat on the edge of her bed. I later did an impersonation of her saying she could have even stood up to speak to her. It wouldn’t have meant she was talking down to her.

Falls over

I did hear part of the conversation they had, the Social Worker asked her where she lived and asked if it was good? I couldn’t help my shot, Betty had a little laugh. The curtains were pulled closed as if that helped. I did apologise, but I made myself scarce. I don’t know of any older person who looks forward to going to live in a nursing home. So, I had thought it a ridiculous question.

My last day, I was discharged around 10am, I had slept badly, my mum was late coming to collect me and I’d stripped my own bed. Betty let me snooze on her bed. She was a sweetheart.

Before I left, when Betty was out of the room, I snuck all the plastic cups I had collected into her bed. I swear to God, five minutes after I’d gone she messaged me to tell me I’d not done a very good job, she had found them straight away.

Discharge

 

Red Tape

Published October 12, 2018 by helentastic67

Red Tape 2

Red Tape

People who don’t work or live in a world of disability don’t understand what life is like without.

Able bodied

Last week I spent some time with a brain injury group and the moment I sat down, I felt the clawing hands of desperation to get at my funding, to benefit the place I was at.

Desperate for funding

I mean, I walked in and all the members were excited because they were all waiting patiently for “stuff to happen.” Then the staff started treating me like I worked there. How many people are coming? Where is Neil?

Treat like staff

Admittedly, I live closer than Neil (who is from the Peninsula and runs a group called ‘United Brains’) There weren’t enough chairs and I was informed  there were “staff” in the meeting room next door and they were using all the chairs.

Staff

Call me crazy, but I don’t think much success can come of a business model that doesn’t prioritise chairs for welcoming visitors. That’s not even the thing that made me completely livid last week.

Welcoming visitors

But the ‘thing’ that annoyed me the most was when one woman stated the staff at the NDIA don’t come from a disability background, because they want to treat us like we are NORMAL.

NDIS

Grrrrrrr….. this is why I’ve had to explain what my AFO does, why I had medically approved shoes and why I deal with migraines all the damn time.

I’m pretty certain, I’ve NEVER BEEN NORMAL!

Never Normal

Normal does sound pretty boring.

Normal is boring

 

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