Hell on Wheels

All posts tagged Hell on Wheels

Rehab – Part 5

Published November 2, 2018 by helentastic67

Rehab Part 5

Rehab Part – 5

There are some days, even earlier this morning, I had so much to put down on paper, I wish for the ability to plug into my brain and just download it all.

Download Brain

Had a carer, spent what is for me, the morning having breakfast, making some calls. Ok, leaving messages, prompting me to ask “Does anyone answer their phones anymore?” and after getting out hellonwheels.

Answer phone

Committing to go out on a day that could be better spent at home with the air conditioning on. So out on the scooter, cruising for a bruising.

Cruising for a bruising

Made a quick stop at the local supermarket, spoke to the homeless guy out front for a spell. (He was having an emotional day) His competition at the other supermarket apparently has a home but begs for coins to support his habits.

Homeless

Anyway, I think he was just happy I seemed to know of the kind of organisations he would be able to call on my people to deliver my lovely muffins.

Then to Lucy, my local milkbar that puts my Sunday paper aside. (I know old school) and I met her through her sister Megi who was in the back unit from where I used to live. Megi and I have the free food trade agreement.

Milkbar

Scootering down my old street I met one of my regular peeps, Marri and stopped for a chat. Eventually, off again and it’s taken me ninety minutes to arrive at a café to have a coffee and write. I also delivered Mira the café owner some muffins and she wouldn’t let me pay for my coffee.

Cafe

Just this process of emptying my brain has reminded me of what I was intending to write about.

Empty Brain

Might scooter past Bella and Wilbur on the way home. Do some admin, more calls and try NOT to kip. Great day

No kip

Today’s Lunch – 31st October 2018

Published October 31, 2018 by helentastic67

Todays lunch birthday

Today’s Lunch

Good Mental Health Day

Before I get started, how good is pineapple? I have recently rediscovered pineapple! Not big on fruit and hate buying it and it dying before I remember to eat it. So, very happy to introduce non-Australians to our very cool Big things. The big pineapple!

The Big Pineapple
Had my once a year haircut last Friday………here’s some pictures of my new hairdressing salon!

Annual Haircut

And because I stretch out my birthday celebrations for a week, here’s some photos of my actual birthday lunch. On the way over, Google Helen (giggle Helen) provided directions. You don’t come to my part of town and rely on google!

Including my Blood Orange mocktail with rosemary, and things I’ve forgotten. A amazing shoulder roast lamb, with salad, corn on the cob and zucchini chips and (OMG) Saganaki (haloumi cheese grilled with figs) mmmmmmmmmmmm…….

And Monday, my favourite cake from my favourite cafe. I can never recall what it’s called so when ordering I describe it as “chocolate salted caramel thing?” And Gabriel will tell the new-be what it’s called. I convinced Caroline to share it with me. Each bite all she could say was “Oh My God! That’s Amazing!” Which is why I took a second piece home. To last me the rest of the week.
Hey! No judgement. It’s birthday week! There are no calories in birthday week!

Chocolate cake

And a few weeks ago I got to an exhibition in West Melbourne with a friend to catch a chic I was at high school with back in the day. She is an artist who is based in New York! This is some of her smaller work. She did these in her last visit a few months ago so they could go in this group exhibit.
I always find myself at these arty things thinking why does this woman look familiar? (She is thinking the same thing of me) and I go through the rolodex of my history as to where we may have crossed paths? Oh, at one of my artists friends’ openings. Still got it!

Art 1Art 2

 

 

 

 

 

 

 

 

 

 

Art 3

 

Art 4

 

 

 

 

 

 

 

 

 

 

And as I’ve finally even able to have someone get me to appointments on a Wednesday. Wednesday has resumed normal programming. Today’s offering. Pumpkin Arancini with side salad with my  medicine.

Pumpkin AranciniLatte

 

 

 

 

 

 

 

 

 

Cheers,
H

 

Mika

Mika

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

 

Rehab – Part 3

Published October 26, 2018 by helentastic67

Rehab

Rehab – Part 3

Case Study – Part 1

This next post is a series of Case Studies to give you all an example of the kinds of people who you end up sharing a room with in an inpatient rehab hospital room.

Case Study

Now, I was lucky to go into an empty room. It had four beds, we shared a bathroom with three guys in the next room (their fourth bed was a bathroom which didn’t stop a few of those guys using the bathroom in between.)

I asked which bed was to be mine and I then asked if I could have a bed that better suited my vision loss, I prefer to have the door on my right, so I can see people coming.

Ward

She was in newish Highrise of Public Housing, nice glossy blue coloured tiles on the outside, I imagine in an attempt to disguise the fact that it was Public Housing. I know it was Public Housing because I’d previously been offered an apartment there.

But, I wouldn’t take my cat, Jamima and had effectively been told/advised to have her put down rather than turn down the Housing. That guy deserved to be fired! Anyway, the roommate number three, spent much time on the phone saying her bedroom furniture was worth $10,000 and her lounge furniture the same.

I couldn’t imagine that much furniture could fit in those apartments and I kept imagining her shopping at Franco Cozzo.

I cannot imagine which wogs are keeping Franco in business, however I believe his son was in charge twenty years ago and was importing “things” inside the furniture. Likely why the son spent time in the Big-House.

Anyway, I will complete this thing.

Roommate number three took some time to settle in, she never really did as the nurses kept a stern eye on her as when her ex-husband visited, they were concerned she would make an escape.

Call me crazy, but she had one hip, had nearly died and she many not have liked it. (I didn’t, but you don’t go there for a holiday) You stay, you KNUCKLE DOWN, you get better and you get the hell out of there, kapish.

Kapish

Anyway, enter inmate number four.

TBC

Today’s Lunch – 24th October 2018

Published October 24, 2018 by helentastic67

Todays Lunch

Today’s Lunch

Good Mental Health Day

45! 45, 45! Repeat after me! Helen is still 45! Because, my next mid-week blog post I will not be able to say this, I’m not struggling with getting older, or closer to 50, it’s only a day older than the day before.

45

I’m not exactly anywhere near where I imagined life to look like by this age. I don’t know what a 46-year-old should dress, or act, or even be doing however I’m doing the best with what I have.

46

Still trying to have my Wednesday return to some kind of normal, but it’s taking longer than I imagined. So, I’ve been missing out on my favourite cafe. But I will remedy this on Monday and hopefully next Wednesday!

Wednesday

In a meeting for lunch today, for the self-advocacy group I’m part of, not for fun but important. To be continued……………….

Self Advocacy

Meanwhile, here’s what I had for lunch! Butter chicken with white rice and a paratha.
Have to get medicine later!

Butter Chicken 1Butter Chicken 2

 

 

 

 

 

 

 

 

Butter Chicken 3

Cheers,
H

 

Rehab – Part 2

Published October 22, 2018 by helentastic67

Rehab Part 2

Rehab – Part 2

Things to do when you are in rehab and bored.

Bored in Rehab

If you can –

  1. I took a box of rather generic chocolates, someone had given me so that I could give them away.
  2. Once you have eaten all the good ones, the orange coated ones, the Turkish Delights, you get the idea.
  3. Offer them to all your favourite people.
  4. Not the people with diabetes, without will power. (I will not be your drug dealer)
  5. And only if you are like me (bit cheeky). Wait until 2am when you can’t sleep and wander out to the nurses’ station when everyone else seems to be asleep. (including all but one night nurse)

Chocolate for nurses 1

I know this, because as I was making my way back to my shared room, I saw a nurse (male nurse) walking back towards the nurse’s station. He gave me a look as if to say I did need anything? I shook my head and indicated all was well. I went back to bed and he came into check on me. He asked what’s up? And I told him I couldn’t sleep, I had left some ‘things’ down at the nurse’s station. I told him, I hadn’t been up to anything bad.

Caught out

I had just creatively hidden the chocolates around the nurse’s station. Under phone handpieces, on top of light boxes, on top of power switches, behind things on the desktop.

Hiding chocolates

Just anywhere I would come out and do a lap of the floor cruising slowly past the nurse’s station. Eventually, they were all discovered.

Finding Chocolate

Life is short, have some fun.

Life is too short

All I’m saying.

Rehab – Part 1

Published October 19, 2018 by helentastic67

Rehab Part 1

Rehab –  Part 1

Ok, not the NA/AA type. But the physio and OT type.

Being part of a Brain Injury community in Melbourne, like anywhere I imagine, I’ve met kids of people with all kinds of brain injuries. I’ve also heard many different stories of where people were and what they could or couldn’t do when they woke up.

There’s the guy who woke from a coma to a song on the radio, “Stairway to Heaven”

WT Hell?

Great song however, inappropriate.

Don’t know how long he was in this coma; however, he is a bit of the num nut. Likely never be independent despite his obvious ability to walk and talk. His thought process and thinking has obviously been affected.

Num nut

Another woke in rehab, unable to walk or talk. This person can do both now however, both are significantly compromised.

I was really lucky, because of the nature of my AVM and course of treatment, everything that happened to me, I had a say in and everything that happened as far as “fall-out” I was completely conscious for and aware of.

There was that moment when my boyfriend came through the lounge room and saw me in only my nightie, leaning down to do something on my laptop on the coffee table and he mentioned my left calf was (well, not there) compared to my right calf.

Laptop

I had been a little oblivious to that and I imagine I had been unable to rely on that leg for strength or stability. But, I have been lucky not to wake in a hospital bed somewhere unable to comprehend what exactly happened.

Waking in hospital

Now, I’m not saying my rehab has been all fun and games. I did struggle because my left arm worked some days and not others for a little while.

I recall days I struggle to do up my shoe laces an another I cried in frustration on trying to put on a bra. I choose not to leave the house without both and when I actually went to see my main specialist about six months after my treatment, he noticed my left arm, I was nursing on my left thigh. He noticed straight away and asked how long it had been like that? I didn’t know, it had come and gone so even my mum who was sitting beside me couldn’t answer. That day he referred me to physio.

Bra

I did some weekly physio and OT appointments and I was set up with exercises to continue at home. I luckily didn’t lose any of that. I do recall a question being asked of me “How do you manage with opening cans?” I told them I managed fine, because at the time I had a boyfriend. After he left I still managed fine.

Physio

Because I’d put the can opener on the tin, take it off, turn the tin a little and put it back on again. And repeat, until I’d opened the damn tin.

Looking back, how did they not realize this is how I would develop Carpel Tunnel?

My people to arrange this were very lax/lazy because funding requires a lot of paperwork and they know the NDIS was coming (one day), so they never bothered to help me get funding. I got my disc bulge and Carpel Tunnel.

Entering my brief time as an inpatient in rehab, I was an outpatient meaning I would go once a week across town to Caulfield. At the time I lived in Clifton Hill, where I can every Wednesday and I was referred to Caulfield, as it was in the “catchment” of my hospital. (The Alfred Hospital)

Notwithstanding, my mum would drive three and half hours to Melbourne, arriving just in time to scoop me up and get us both to Caulfield.

Long drive

Have I mentioned how much I love my mum?

I digress, where was I?

But I think those early days of physio/OT for me were maybe too soon, or something, not sure. But I struggled with the “make your arm loooong” In an Irish accent to grab that thing. But eventually after about nine years, my walking and hyperextension was being addressed and it was on my side of town. Through a different hospital.

Over the last fifteen years, I think I’ve been to most (not all), but most of the public hospitals for one thing or another.

Hospital visit

Then I found myself at a rehab hospital for two whole weeks as an inpatient.

I’m just saying.

I do not cope well in hospitals where I’m not allowed to go home and seriously I had appointments I maintained out, several days each week and had visitors.

I would often return from my standard weekly appointments with my keep cup in hand and as the lift door opened to the nurse’s station, they would all look up at me. They had insisted with Botox in my calf and a plaster cast on my let.

Calf muscles

Yes, that’s right. Botox in my calf and a cast. They were afraid I would fall over at home. Well, and they didn’t want me getting the cast wet and after two weeks (two different casts) I argued I was getting the cast wet in hospital with the help of four nurses.

So what difference would it make if I was home?

Next

Today’s Lunch – 17th October 2018

Published October 17, 2018 by helentastic67

 

Todays LunchToday’s Lunch

Good Mental Health Day

The wisest words I can share from my shrink! (Cough, just sounds cooler than psychologist) that I can share with you are these. “I don’t have to tell you how to suck eggs!” This is the advice she gives me when I debrief her on how shitty the world I survive in with a disability. I can already hear her saying this to me when I next see her.

How to suck eggs

But why? I hear you ask, you should recently have read about the world of funding in which I must navigate and survive? This year I’ve been trying to decide when to go with a new case management organisation.

NDIS funding

My bad, that’s a dated term. They are now called a Service Coordinator! I had just been handed over to a new one mid-year. I met with her a few times and decided it was time to move. I am funded 2 hours a week to help coordinate my services. You get that I do that right? (It’s a NDIA term, just go with it) according to my new C.M. (shuddup! And go with it, it’s shorter!) told me it was the equivalent of an 8-week review.

Service Coordinator

I’m overdue my review for my next NDIA funding plan, when I get to November 6th the current one ends and so do my carers and anything else I need.

NDIS Review

I met my new CM, and she was really awesome. She told me she was going to get me out of this habit of calling her a C.M. I told her that was fine because I would eventually stab her to death with a fork! Yes, she laughed. so, I’ll now refer to a case manager as a Service Coordinator or a S.C. Try to keep up.

New Service Coordinator

This cool S.C had seven funded hours to get up to speed, book me an appointment for my review and meet with me a few times and be there to advocate for my next plan. In layman’s terms it’s a lot to do in only seven hours.

Have I mention my theory that government agencies and welfare services are not actually about providing service? It’s about making you run around a wheel until you give up and get a job. If you can, or you get screwed. Um, have you met me? My names Helen! I’m thinking about changing my middle name, to screwed!

Running in Circles

And I say this because I got a call from my (cough) S.C yesterday telling me she was handing me over to another S.C. We meet Monday! FFFFAAAARRRRKKKK! Not happy Jan!

Again, had no water this morning, by the time I finished with my carer I cancelled my stabby appointment as I would have been late. Definitely have to go out to get some food for my lovely Caroline as she’s driving me across town tomorrow for my Neuropsych appointment. Did I mention neuropsych appointments, not just for crazy people anymore. In short, the neuropsych test is about working out what parts of your brain have deficiencies or problems doing what they are meant to do. Can’t test too smart as I’ll lose funding, can’t test too slow or I’ll get heavily medicated so I’m bombed out and don’t get to make my own decisions anymore. Oh, oops. Did I say that out loud?
Looking forward for a quiet week, when does that happen?

Too smart

Running out of things to make with lemons.

Lemons

Cheers,
H

Confession

Published October 15, 2018 by helentastic67

Confession

Confession

Alright, I’ve been meaning to write this for sometime and several times each year the sentiment is highlighted and I feel I can’t control myself or stamp it down any longer. I must make a confession of sorts. I love Reality TV season, which lately is all year round.

Love Reality TV

Still reading? (Cricket, cricket, cricket. OK, before you all go “OMG, OMG, OMG, Me too) Gush, Gush, Gush. Just wait, because, no not in the way that sounds.

Cricket

A few years ago, there seemed to be the quintessential Reality TV show call “Goggle Box”.

Gogglebox 1

OMG, if you are unsure; the basic premise of this show is a camera watching normal people like you and I watching TV and watching all kinds of other Reality Shows and commentating on them.

Grumpy old guy

At the time the advert was a grumpy old guy saying “I’ll never watch that” and the male voice over replied “Oh, they all say that” but they all end up watching it.

Well let me tell you, I’M WITH THAT FIRST GUY. Hell no.

Hell No

I don’t need to watch a heap of bitchy people date.

“Oh, I’m reaching forty and I have no kids” I’m not married (yet) and I don’t have children. So, I don’t define myself by what society thinks I should have made happen.

40 and single

So, I have little interest in the romance type shows.

“Oh, I’m almost twenty-five, I’m yet to get a boyfriend.”

Shut up, just shut up.

Shut up

Anyway, suffice to say, it’s my favourite type of TV because I have the time to watch what I want in my own way.

Watching TV

I binge (just TV) but I’m not happy unless I’ve a list of shows I want to get to.

Binge watching

So, as confessions go, that wasn’t that hard was it?

Hope you don’t judge me too harshly.

Don't judge

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