Life One Handed

All posts in the Life One Handed category

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

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

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

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

 

Land of Funding

Published October 8, 2018 by helentastic67

Land of funding

Land of Funding

People may wonder how I’ve had my disability for 12 years, yet have not qualified for funding before the NDIS kicked in a few years ago.

NDIS is coming

Well, if I were to do it justice, I could write a book or this blog would be about nothing but ‘how the system failed me.’ But however, I don’t want to issue you all with warnings to go hide your razor blades or pills or any other dangerous self-harming implements’ (in America I guess that includes guns!)

Self Harm

So, allow me to do an abridged version. Ok, I’ll try.

If I was diagnosed early, say under twenty years of age, bingo. There would be FUNDING.

Under 20

If I was a mangled ‘thing’ in a nursing home under forty years old. BIG FUNDING.

Under 40

If I’d been in a car accident, even if I was off my face on drugs and smashed (drunk), I’d have TAC funding.

Car accident

That and all of the above means, I might not even need carers, I might be able to drive still, but I would have so much money I could get new computers, smart phones, iPads, Playstations (is that the gadget these days?) every other year and no one would stop me.

new equipment

However, I had to do it the hard way. When do I not?

After my treatment and the ‘fall-out’ that gave me my disability. Maybe because I was maintaining life independently and didn’t spend time as an inpatient in rehab, learning how to walk and talk (not complaining. Just stating facts) I started ringing around to see how this world I now had to navigate worked.

Navigate the new world 1

I rang DHS (Department of Human Services) they do Case Management, but are so overrun, they outsourced to other agencies and businesses that they then find.

DHS

I was given two names that I followed up. The first sounded reliable, but had a huge waiting list. I rode them like a kid on a bicycle. I rang so much staff turned over and eventually I was given short-term Case Management to achieve some goals.

I’m sure I mentioned how GOAL AND OUTCOME DRIVEN the land of funding is.

Goal and Outcome

Because apparently, anything less is not worth doing. Please not sarcasm.

I digress. I have dealt with two different Case Management companies (they say they are organisations but they work on a business model “to make money”) so they are companies.

Make money

The first I had an Advocate and made a complaint to the Disability Commissioners office. Case Management companies literally can sign you up, give you the ‘YES, YES, YES’ go back to the office and never speak to you again.

Yes

Both companies always said “YES, YES, YES” we will do an application for an ISP (Individual Support Package) and it never fucking happened. One company gave me the excuse that they are rarely fucked. It’s not good enough reason not to do one though is it?

I really could go on and on about this topic and Helen’s lack thereof, but it is likely almost enough now.

I guess also that the system failed me because while there were whispers of the impending upcoming NDIS, everyone thought it would solve my problems. It was painted as a light at the end of a very dark tunnel. So, everyone let me wait.

Problem solver

So, I’ve struggled, I’ve had to move house four times since my diagnosis, not always because next was outrageously high or lack of decent housemates not wanting to deal with shitty, stressful housemate drama anymore or even that I’ve used every dollar I had on renting and much from my father and lastly is the constant reminder from others, who don’t have any money issues or funding issues, trying to give me their opinions on the thing, the thing, the thing and the thing, when they really know not a God damn thing about it.

Dad money

Advocacy

Published October 5, 2018 by helentastic67

Advocacy

Advocacy

Someone gave me the most brilliant analogy for advocacy and the success felt when achieving anything major.

Advocacy success

For example, I’m currently wearing my new shoes and have been for about a month. The shoes are referred to as Custom, not custom by NDIS.

New Shoes

They weren’t made by hand to specifically fit my feet, but you get fitted in the shop and there are layers in the bottom of the shoe that come out to make room for my AFO (Ankle, Foot Orthotics) and the overall effect is, I can walk better, my AFO does what it’s designed to do, my hips won’t be uneven and the most important thing is, I won’t need a knee replacement one day, because I have a habit of hyper-extending my knee.

AFO 1

The shoes actually come from the States (as in America) and are the most expensive shoes I’ve ever owned. They are not yet PAID FOR.

Expensive shoes

I know, sounds ridiculous that I’m currently wearing $350.00 pair of shoes that weren’t paid for by the NDIA (National Disability Insurance Agency – who manage and deliver the scheme)

NDIS

So, the analogy I was given (no, I didn’t forget) was that Advocacy is like trying to climb Mount Everest. Then her advice was to stay at Base Camp. I suggested that was likely wise, since the air is thicker there.

Mt Everest

Lead or Follow

Published October 1, 2018 by helentastic67

Lead or Follow

Lead or Follow?

Someone just posted on Facebook, is it possible to ever feel like you are caught up?

Getting caught up

I chose to answer a different way.

“It depends who you are comparing yourself to? Just lead that way, you are always in front!”

Comparing

Which leads me to quote a lecturer from the Leadership Plus course I did about six years ago at RMIT.

Leadership

Sadly, he is no longer with us, having passed away from a tumour. However, I distinctly recall him telling us.

“If you can’t get people to follow you, you are just going on a nice walk!”

Wise words

Wise words from George.