Mum

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Different

Published January 17, 2022 by helentastic67

Different

Was catching up on some of my data entry today when I realised how well I cope with my brain injury. So well, people often forget my AVM/ABI is not so much mental but physical.

I guess the point of my blog is to educate people that all brain injuries are different. While catching up on my data entry, which is a lovely excel spreadsheet where I record the carer hours and other services for future reference, I realised a date in November 2020 I had so much on at the same time it wasn’t funny. Yet I can cope. This particular day, I had my Personal Care (PC), carer for an hour. My community access carer, despite not going out arrived just ahead of the PC chick. All of which I can work with, as can they.

I still had to be presentable as I had a committee meeting via Zoom. While I don’t do make-up when I’m not out of my home (apartment!). I won’t do make-up to stay at home, but I do need to not do colour and then I remembered my MOTHER was here. It was not planned; it was very last minute the night before. But it is what it is.

My mum had gone out to her appointment and returned by the end of the Zoom meeting.
By which time my handyman had arrived. My handyman comes once yearly for a spring clean. Does windows on the inside, the fan covers in the bathroom, any areas on walls or floor that take a serious hit and it’s not the light cleaning my weekly HC (home care) carers need to do. Suddenly with too many warm bodies in my apartment, a complaint goes out that it’s too hot and can the A/C go on? Well, it’s set still too hot but here’s the remote, work it out.

Still three people are in my home and I’m to prioritise what everybody wants as the most important thing to solve first. At this point I get a bit grumpy. OK! We are working on it, if you can’t help, don’t be part of the problem my mum gets the heater to cool air.

There is a new calm. Mum makes her lunch and coffee and departs for her long drive home. What she was here for had been achieved.

Despite what she may think of how I feel about my mum. My mum is a ROCKSTAR! She really is.

The second carer gets her stuff done for me and departs. It’s just me and the handyman and a recently departed carer visits for a bit. She distracts the handyman briefly with talk of fruit trees and such. I’m meant to roll with the punches, it’s fine. The handyman goes, as does the visitor.

My brain is fried. But I coped with all the craziness. All these things, they wouldn’t normally happen ALL AT THE SAME TIME.

Foil

Published January 13, 2020 by helentastic67

Foil

Pray tell, anybody? Please explain how this is still a thing? (rhetorical) Every now and again, someone is in my home using foil in the capacity to assist me. Lovely people that they are and I’m having a conversation with them, I thought their mum would have had. Or somebody. No?

Just thought perhaps I should Google this topic before foil-shaming everybody, but don’t want to lose my train of thought. So, alas I will forge on, finish then Google and share Google results. Sure!

Damn it, now I’m doubting myself and over thinking it. Forge on. Do you know, there is a right and a wrong side of foil? Well let me tell you. There is indeed.

You should always put the shiny side down over whatever you are baking or if wrapping something inside it? Shiny side up, put in contents and fold foil over food to seal in the goodness. Something to do with insulating it.

Every now and again, more often than you can imagine, I am explaining to someone, different race, religion, age, etc, etc, etc. This fact, how is this so?

Now Google. Got a little lost in the over thinking, however!

Google. God, I hope I’m right.

Well, itself propagated as a Google search, it has been so very popular. I’m just saying I was not the first person to ask. I didn’t read them all and there are varied opinions.

I’m just saying the shiny side retains heat better and doesn’t stick and I will finish by saying to all the Americans out there. You say Aluminum wrong too. OK, how about weird?

 

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.

 

Today’s Lunch – 24th July 2019

Published July 24, 2019 by helentastic67

Today’s Lunch

Good Mental Health Day

I’m writing this with a migraine so cut me some slack.

Have been the usual way too busy, last Friday I went to the launch of the first Changing Places in Darebin (that’s my council district) in Preston. It still had that fresh/never used smell which I imagine won’t last long. Thankfully, my mobility won’t mean I ever need to use it. Not complaining!

Sunday saw the arrival of the ladies in my family arrive for the celebration of my mums 70th! Logistically, I’m more in the middle so mum booked a Japanese banquet close to me and I did thousands more steps than I normally rack up! (It’s normally 26 steps, which is the distance from my bed to the couch a few times!)

I had a moment before mum arrived at the restaurant to seek my sisters’ partners advice. I did show the Aussie Slang card to mum and she did laugh but she would not have been pleased had I given it to her. I would never by the way.

 

 

 

 

 

 

 

 

 

 

I confess I’m not big on raw fish. At one point, my younger sister (30) commented to me “it’s tuna! It tastes like jello!” No, it didn’t. It felt like slime. I’m much more into tempura and definitely the green tea ice cream.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Now, today’s fine offering is panino Milanese with salad and medicine!

 

 

 

 

 

 

 

 

 

Lastly, a shout-out to my Young John and his wife Young Betty who are currently in Greece and to my lovely masseuse and friend Caroline who is in Italy with her husband! Where the rule of no pasta for health reasons sadly still applies. Speaking of pasta.

Young John & Betty

Italy

 

 

 

 

 

 

 

 

 

 

Last Friday my Girl Friday and I did pasta on Smith Street Collingwood. Here is a before and after picture.

Pasta Before

Pasta After

 

 

 

My Kitchen, My Way

Published June 17, 2019 by helentastic67

My Kitchen, My Way

One thing that is a particular challenge being one handed, is how my kitchen is set up. I think I’ve moved four times since my diagnosis and every time I’ve moved since my disability, my mum has been there for at least a week after helping me set up. It’s very important for my kitchen to be unpacked before she goes, she makes that a goal before she will depart, knowing I will get the rest sorted in time.

It’s equally important for me to be part of the sorting of the kitchen. Mum will shove all my oven trays in a cupboard to get them put away, but it’s some time before I get back to it, so I can see/feel/manage what’s in there. What I need to use regularly and put the items I rarely use somewhere else.

Last week I tasked one of my carers to get out a muffin tray and after she swore and carried on, I got up to help. As long as the carers aren’t swearing at me and I’m not swearing at them, it’s fine.

 

Miracle

Published May 17, 2019 by helentastic67

Miracle

The beauty of being in Australia is we have a long weekend, being part of the Commonwealth means we get to celebrate the Queen’s birthday and not just once a year, but twice. Don’t ask me when, but TWICE.

Although I don’t work, even I’m glad to have an extra day off around the weekend. But it comes with some consequences, the appointments, the carers and services I normally spread out over five days, I have to squash them into only four. There are always extra things cropping up I need to fit into the mix.

Last week was a short week and the extra things being, my mum arriving Tuesday morning at 2am to collect my sister from the airport at 6am. So, my sleep was already compromised. I’d had my Friday services of shopping and my only food prep shift with a carer that had to happen somewhere else. Add to that the services on the Thursday I had to move to accommodate the above and you have the perfect storm. I’m surprised by the Friday I didn’t have a migraine.

 

 

Thursday, I had three carers all of which overlapped and I even had the scooter guy to do a maintenance sorting me out with two new batteries and a charger. I returned home with my shopping carer to do the food prep shift, where we normally smash out three things at once, part of each I’ve generally started to get ahead of the ‘crazy’. I had the gas guy there to check the burners of my stove top and they had NEVER BEEN DONE.

I think the apartment block is four to five years old and the fact I made it through the week without a migraine now, makes me think it could have been a miracle.

I think we have another long weekend next month, Cup Day, great. Gotta plan now to get ahead of that. It’s a month away.

I’m More Than Just a Stroke

Published March 29, 2019 by helentastic67

More than just my stroke

I’m More Than Just a Stroke

There is so much judgement to having a stroke. Normally I get it by just a look sent my way from someone in passing. I usually notice it and go for the wry smile anyway. I prefer to kill with kindness.

The look

Sometimes others witness this judgement and they take care of it too. To be clear my mum personalises every single slight that happens to me. So, she reacts like it’s all happening to her. She can’t help herself.

Mum

But the carer while arranging her social engagements for the Sunday afternoon, she told her friend she had me in the morning. She described me as and in the context of “Helen’s forty-five and had a stroke.” Something about the tone she used, I responded with a “Yes?” with the end of the word lifted. Raised my eyebrows some. She sniggered a little and seemed reluctant to share.

Sniggering 1

Her friend’s judgement was swift “forty-five and had a stroke? That’s young for a stroke.”

I reminded her I’d been in my late thirties, but she informed me that he had put him (her friend) in his place, that I hadn’t been a drinker or a smoker.

Drinker and Smoker 1

Big love her way. Bless her cotton socks.

But I reassured her, I’m used to that level of judgement from complete strangers. I told her it was fine, I wasn’t even offended. I had a fairly thick skin in some ways these days and I will growl a questioning grumpy “What?” at someone who gives me a look of disrespect or I will give them a “FUCK YOU” if needed.

Fuck you

So, there are times, it’s just not worth it to need to advocate every single time someone disrespects me or I wouldn’t leave the house or answer the phone or deal with family. I would just stay home and wait to die.

Waiting to die

I do of course reward and thank people who take the time to simply step out of my way, so I can pass and I don’t make a big thing of it, so I incline my head slightly and give them a quiet thank you in their direction.

Thank you

 

Twenty – Three

Published March 4, 2019 by helentastic67

Twenty Three

Twenty-Three

Today, I’m going to take everyone back in a time capsule or a time travelling machine to when I was about twenty-three.

Time machine

Ah, good times, right? Well, we shall see. I’ll let you decide.

As you know, when I was younger in my twenties, I worked in nightclubs in Melbourne. Until recently, I thought I’d worked in clubs for a whole ten years, but when I did some ‘hard maths’ I realized it was only five years.

Nightclub

My club ‘work’ (it’s still the right team if my output of hours and efforts did not equal my income) was several day’s a week and as many night’s as 2-5 nights a week. Despite my best efforts, at one point I found myself without a roof over my head. I had been living with my older sister and when we finished the lease on a house, she found a place quickly and moved out and then I struggled.

Homeless

Apparently, it’s really hard to imagine when I said ‘I don’t drink, so won’t becoming home drunk and vomiting’ and don’t lay around all day is not much of a sales pitch when promoting one’s self as a prospective housemate to strangers.

Looking for a new home

Having a good club network of friends, I managed to find a space on someone’s lounge floor for a small amount of money so I wasn’t out on the street.

Living on the lounge

These kids were younger than me and the meals I cooked and shared were the only meals I saw concocted from their kitchen. Needless to say, I maintained my day/night sleep deprived routine.

Sleep deprived

After a month or all of my house-hunting efforts and my day/night work routine, the kids I stayed with asked me to go stay elsewhere, as the landlord (one of the girl’s father) didn’t want me there.

House Hunting

On the Tuesday, my day routine of distributing night club passes, took me to Chapel Street South Yarra and Greville Street Prahan. I dropped into visit my sister, who worked in that area. She gave me a very hard time, that I hadn’t found anywhere to live.

Sisters

I then ran into my cousin with her shopping bags of groceries. I was so happy to see a friendly face. I asked her to go get a coffee with me, as my sister had so upset me. When I saw her friendly face, I burst in to tears. When she went to put her groceries in the car and come back to me, the weirdest thing happened.

crying

I got a splitting migraine and plus I peed my pants. What? I know!

Briefly, visited the café to use the toilet, then my cousin gave me a lift back to where I was staying. I made it inside feeling very seedy. I hadn’t eaten all day, other than my spirulina (for breakfast). The toilet was occupied, so I threw up on the carpet. What? Are you not meant to do it there?

Feeling seedy

Have you ever had a headache so bad you couldn’t make a simple decision not to throw up green spirulina on cream carpet? Yeah! It was that bad.

Bad Headache

I made it into the toilet only to collapse on the floor, one of my temporary house-mates actually had to come into the small toilet to lift me and get me out, because I just couldn’t move.

Collapse on floor

Thankfully, they put me to bed, closed the blinds and turned off the light and with a little instruction from me they rang my mum.

Call Mum

To this day, when the shit hits the fan, I call my mum. Have I mentioned, I love my mum?

Love Mum

Mum was on the road within an hour to come get me. Back then, mum still living in my home town in the North East of Victoria. So it took her three hours to get to me and once I was bundled in the front seat with a bucket (that I don’t remember using) we headed back home for another three hours. I don’t recall having much to say all the way home.

Mum to the rescue

Now, to be clear, at the time we put my migraine down to MSG food poisoning as it was and still to this day, THE WORST MIGRAINE I’VE EVER HAD.

Worst Migraine

I was bedridden for a week and I didn’t eat. I remember visits to a chiropractor most days and on one visit being muscle tested to work out what I could eat. One morning mum insisted I eat and she bought in some green grapes. Good, right?

Bed ridden

Mmmmm, we arrived at the chiropractor’s office, not far from mum’s in time for me to fling open the car door and deliver those grapes onto his driveway. A woman was doing her gardening and commented I really needed to see the chiropractor.

Chiropractor

One morning mum insisted I get in the shower, I remember getting into the small shower and just standing there unable to move. Eventually, mum came to help me. Did I mention I love my mum?

Assist in shower

During that week, you might wonder whey my mum didn’t take me to a doctor or emergency room? Yu know, those moments when you realise a ‘higher power’ (I refer to it as The Universe looking after me. I have few Catholic types who follow my blog) they will think it was odd but anyway. Every time my mum went to call the hospital or the doctor, they were engaged, so we got the message not to go.

Call Doctor

I did notice my head hurt less when I rested it on one side less than the other. Weird right? After a week, I all of a sudden felt a little better, at least good enough to eat something. What did I eat first? I’m such a wog, Salami, then Cabana, OMG I think mum thought I’d be sick, since I’d not eaten for a week.

Such a wog

I remember being very slow to get my energy back, all in all I stayed with mum and my younger sister a whole month. My older sister visited once, insisting I was being lazy and to get my arse back to Melbourne to get a job, so I could find a place to live.

Being Lazy

While at home, you might wonder if I heard from any of my club friends, since I would normally be there from opening (10pm) until the end (5am), I was usually out in those days from anything from 2-5 nights a week. One night, I started to my ‘good-byes’ to friends far earlier than normal and one guy asked me if I was dying. I’d had a cold, Ok. Can’t a girl go home early once in a while?

Have a cold

Correct! No one called me while I was sick to ask how I was. Admittedly, it was before the era of everyone having a mobile phone.

No one called

Interestingly, the Universe really was looking after me while at the time we thought it was MSG food poisoning, after my diagnosis, when I was thirty-four, one of the specialists I went to, was in Sydney and the young lady (who actually hailed from Melbourne) suggested back when I was twenty-three, I likely had a bleed or a leak from my AVM.

AVM

My mother and I agree if I’d been diagnosed back when I was twenty-three, the hospital I was born at in the country, would have had the attitude of ‘No Worries, we can fix that’ and it would have been the worst experience of a guinea pig ever.

No worries

Ironically, when I collapsed that day back in Prahan when I was twenty-three, I wasn’t very far from ‘The Alfred Hospital’ which is eventually where I had my radiation treatment. Mum and I both agree that I was diagnosed at the right time, because the early treatment options that were available to me came to the Alfred and was covered by Medicare.

Diagnosis

So, all in all, I think I was really lucky and my sister, to this day has no idea how serious it was.

No Idea

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.

File Under Apartment Living

Published February 4, 2019 by helentastic67

Apartment Living

File Under Apartment Living

I was talking to my mum on the phone, the balcony door was closed, the only window open in the study (the second bedroom) and my mum says to me;

On the Phone

“Can you turn that down?”

Turn that down

I don’t know if I’ve mention, but I do all calls at home on speaker phone, in case I need to pick up a pen or I multitask doing “something”.

Multitasking

I told her I couldn’t turn it down as it was a motorcycle.

Motorcycle

What was I meant to do? Go out onto the balcony and scream out

Scream turn it down

“Hey you, MUM SAID TURN IT DOWN!”

That would go down well wouldn’t it?

Ba Hum Bug.

bah-humbug

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