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.

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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

 

Today’s Lunch – 10th October 2018

Published October 10, 2018 by helentastic67

Todays Lunch

Today’s Lunch

Good Mental Health Day

People often think people with disabilities don’t have a sense of humour, they would be wrong. Made the best disability joke yesterday and only two people were there to witness it. I was at Ross House where the self-advocacy group, I go to is located. All the resident organisations are not for profit (NGO’s) The lift is old and small and slow, there are stairs. I’ve never used them. There are four floors and with my young carer who normally escorts me shopping and cooking on Fridays in the lift and a complete stranger, the lift seemed to stop every floor on the way down yet there was no one there to get on the lift. I muttered to my carer as to why the lift kept stopping without anyone joining us? “Someone probably pressed the button and they got sick of waiting and took the stairs but, I can guarantee you it’s not someone in a wheelchair!” Yeah, I went there.

Disability humour

Wednesday has started a bit differently. No water in the whole apartment complex until after 1pm so lunch will be after my only appointment and I think it’s about time I put a myth to rest, I wrote in an earlier post how I dislike the “Like”. It may have been taken out of context. I love the “Like” I have only two ways to tell if people read or like my posts. I know it sounds needy, however, hit me with a “Like and comment” I need to be validated too. Oh, yeah! I just hit 200 followers. I know, it’s not that many to some of you. I still get excited by every single one. I go check out what you have to write about and hit you up with a “Like” so you know I dropped by. If you write about something I’m interested in or feel I can support you I will follow you also.

Like

Eventually I got out on Hellonwheels to get to my only appointment, which was to get stabbed, that being acupuncture. In true Melbourne style it’s spring. So, t-shirt weather if you are lucky to be in the sun but not catching the wind. I couldn’t wait to get home to put on some warmer clothes. I stopped to collect a little cannoli and a French donut (it’s got custard in it) and stop at the post office.

French donut

No photos today.  But I can show you some cute toys I bought Mika last Friday. You have already shown more interest in her new toys by reading this. Except, well I think I don’t need to describe what obviously happened here.

Mika toys

Need more coffee, much more coffee! Medicine!

Coffee

 

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

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