Hot off the Press 31st May 2021

Hot off the Press

A Hot off the Press like no other. Last week I was able to have my visit to Young Betty. We met in Rehab and for just a moment I’ll let you imagine we met in drug-rehab, except we didn’t.

Betty is my 90-years young friend I tease every week day after and before watching a trashy TV show I introduced her to. I’m not even sorry.

Although Betty was not having the best day as it was the 1-year anniversary of the passing of her husband (and a day) and the day of the 4th lockdown in Melbourne F**k You! CoVid! (I might just mean thank you)

Friday, I put a rib out!!!!!!! Nothing! I’m just answering your question. Ok, I was putting on my jacket, then just couldn’t move. Trip to chiropractor (2nd in 3 days!) I actually used a swear word I’ve not used before, she laughed! Thankfully, as I was squirming. It hurt so much. Anyone who speak “Chiropractor” it was L10/11.

Friday night, the tram works began out the front of my apartment complex. I did get a 15 second audio sample of what I referred to as the “Soundtrack of my lockdown!” But didn’t save it. (Don’t even start me on that monumental fail!) Here are some photos instead.

The whole street is closed for a week. For all the noise they are making, they had better be making the new tram stop accessible. Progress, you know. I could Fang it out of the garage on hellonwheels and straight onto a tram, to my local appointments. Wouldn’t that be good?

On the upside to the lockdown, currently only 7 days, is I get a 4-day weekend. So much for catching up on what didn’t happen in 2020. At least I’ve got Mika for company next.

Stay safe.

Cheers,
H

Hot Off the Press – 19th May 2020

Hot off the Press!

Sometimes, blogging about the here and now and the most important reason to blog gets lost in all the detail. So, being careful to consider someone else’s privacy.

Imagine being 29 and all you want to do is survive, to thrive, with a pre-diagnosed medical condition, you have a stroke!

Again, not my story, but a friend.

After over a month in hospital, being tested for everything including CoVid19 and with no answers. Sometimes, this is the way. No answers.

Being kept company by parents, day and night so nurses give the best care. The same care they would give to anybody without disabilities or pre-diagnosed medical conditions. No matter what they are. A short stint in in-patient rehab, where physio appointments went cancelled because of the low expectation of recovery. Parents needing to still be there to advocate for their child to make sure they get what they need.

What to do now?
Well, the hospital and the patient, to be fair want the patient discharged ASAP. The patient obviously very keen to be home where his parents can arrange the best for their child. Well, adult child and the parents could get a reasonable night’s sleep, to continue to love and care for their child as only parents can.

So, in a perfect world, a caring parent/advocate/carer applies to the NDIA for a change in circumstances, so the patient can go home. Extra carer hours can be utilised to provide adequate care in the home. Plus, some much needed respite for the parents. And sufficient physio and Occupational Therapy to return to at least the bare minimum or return to the same level of independence my friend had in the comfort of their wheelchair, not so very long ago. Is it too much to ask? Is it even possible? I guess we don’t know until my friend is in the best environment for this to happen. Which is clearly at home.

They can’t go home until these things can happen.

I don’t know about anybody else, but I don’t have the funds to pay for these kinds of things, so the NDIA, a government organisation should prioritise these things, no? Let’s see how long it takes for my friend to be able to go home.

And lastly, I’ll leave you with this great quote that I only know about because a great Aussie disability advocate used it.

Disability is seen this way………
“The soft prejudice of low expectation!”

Please share through your networks to show your support. While these stories go untold people get away with providing sub-standard care. Let no single person with a disability be left behind!

Cheers,
H

Rehab – Part 6

Rehab Part – 6

I have carers, as you know who take me shopping and even my morning carer that helps me get ready after my shower, to face the day, they all become my friends. It’s inevitable, the ones I can’t crack are usually very reserved, on account of them not planning to put down roots and those don’t plan to stay in the job long term, choosing to move onto other things.

When out and about on my shopping adventures, it’s much more like I’m hanging out chatting with a girlfriend.

I might have mentioned, my carers are usually older, sometimes younger, rarely my actual age.

I’m now 46 years old and I get along with all my carers regardless of their age.

Off to the supermarket on Friday, I don’t remember what we were discussing when I said “Yeah, well, I finished High School in 1990.”

And she said

Wait for it.

“I wasn’t even born then”

Yeah that just happened and then later that day.

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.

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.

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.

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.

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.

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.

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

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

Rehab – Part 4

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

 

Rehab – Part 3

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.

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.

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.

Anyway, enter inmate number four.

TBC

Rehab – Part 2

Rehab – Part 2

Things to do when you are in rehab and bored.

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)

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.

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.

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.

Life is short, have some fun.

All I’m saying.

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.

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.

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.

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.

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.

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.

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.

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.

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

First World Problem

First World Problems

You ask anyone with a disability what they encounter on a day to day basis, they will take most things in their stride after a while.

Early last year, someone I knew was banging-on Social Media about having some elective surgery to a sports injury (OK, elective is debatable).

But, he had surgery, a short stint in hospital, then inpatient rehab for a few weeks, then home to continue rehab as an out-patient with a boot, what-not.

Where normal life of work, study, family would continue pretty close to normal.

Really, what annoyed me about this was he really wanted sympathy and I didn’t have it for him because at the same time I was upstairs in the same rehab facility.

And in my room of 4 beds, I was the Neuro (Neurology) patient in the room. And I was there because I’d had Botox in my calf and my leg put in a cast!

Have you ever heard of such a thing?

And no, Botox. Not just for young and old to make them look younger!

I will explain Botox in my next post.

Guess, I’m writing that one now too!