It was a Wednesday when I finally was allowed to go home.
That morning Hubby arrived at just after 8am . I wanted to have one last breakfast and a shower before I left PJC – so I did
After I got dressed and ready, Hubby packed the last of my things in the car and then we waited for my team to come and bid me farewell and give me my discharge paperwork
By around 10 am we were in the car and headed to our first stop – the chemist. I had bunch of scripts to pick up. ( And by I, I mean Hubby went and collected them all for me)
Then, as it was getting close to lunch time, we went and got a couple of breakfast focaccias.
I tried to stay awake. I really did however, shortly after lunch I hit a wall and needed to go down for a nap.
Hubby had errands to run and decided to take the opportunity to go do things whilst I slept.
Sadly, not long after he left, I needed to pee and so … I found myself going to the toilet for the first time since surgery on my own. Given my overly tired, fully medicated state I was extremely overwhelmed and ended up sitting on the bed sobbing my eyes out completely freaked out by everything.
Thankfully Hubby returned not long after this and all was blithe and bonny.
It’s been about a week and a half since I’ve been home and things are improving a little more each day.
I can shower now. I was given a stool on loan ( I have decided to keep it So, I will be sorting that out ASAP ) and I use it to sit on every morning.
Going to the toilet is still a struggle but not as much as it once was ( it’s due to my surgery wound not being healed properly just yet and where it’s located on my right leg)
Getting dressed is still a slow process but again, I am getting there.
I do exercise daily so there is that. My rehabilitation takes a step up a notch as of this weekend when I hit the pool and start Hydrotherapy
Being home has been nice. I was worried at first. Mainly because I thought I wouldn’t be able to shower – but since I have that sorted, I am pretty much OK.
Things I currently not allowed to do
Kneel down on the floor
Use crutches
Get on my recumbent rower bike / Rower ( Though I have tried)
Those I need to wait a little bit longer for. They will come 😀
Once again, huge thanks to everyone at PJC for their support, care and understanding.
With the way this blog has turned out- We’re heading for a part 3. I will try and get the final section done ASAP . I Promise! ( Please note: All photos used are from my phone. Taken on the day by me- except the official Hublander ones)
So, where was I? Oh yes, the doors closed.
Now, before I begin to talk about the day, the panels, the episodes airing on the big screen, the never ending lines for photos and the marvel that is STEVE …I just wish to point out that it was 38 degrees in Melbourne that day. 38 DEGREES! ( or 100.4 F) and we were all shut in a giant tin shed with very little ventilation or air conditioning.
Not that any of us cared ( at that point) to be honest. .. The regrets later however … Hmmmmm.
I’d say that, for the VIP / Platinum members panel – there would’ve been roughly 100 people. ( There were 800 people in attendance on the day) and our first guests for the day were Sam and Duncan.
Sam Heughan and Duncan Lacroix kick off Hublander Melbourne 2024
It’s at this point I’d like to point out that all Hublander USBs of the event have been sent out and mostly received. I still haven’t watched all of mine yet so I am going mostly from memory. *Deep Breath* Wish me luck!
Duncan was severely sunburnt and suffering sunstroke after arriving in Sydney and having a run in with his first ( I believe) Australian Summer. Whilst I’ll admit, Bondi can be a great place to party for the beautiful people, you still can’t do it without taking precautions. In this case, ye olde SLIP! SLOP! SLAP!
For my American Friends, the SLIP! SLOP! SLAP! ad campaign was one of Australia’s most successful ad campaigns around the prevention of Skin Cancer. The message was simple – SLIP on a shirt, SLOP on some sunscreen and SLAP on a hat.
Suffice to say, when photos on Duncan’s IG showed him burnt to a crisp – we were very concerned for his welfare. We all hoped with the help of the Good Lord and a poke with a sharp stick – He’d be OK!
Thankfully, not only did he survive the Australian Sun but also made to both Sydney and Melbourne events in one, rather red, piece. For which we were all eternally grateful!
The Panel was great and lots of laughs were had! After they’d finished, the rest of the attendees were let in ( after standing outside in the sun for 874 years) and took their seats.
While people were taking their seats, the VIP / Platinum guests were off to have their first photo ops for the day. First up, Sam and Duncan:
Sam Heughan and I at Hublander 2024 Duncan Lacroix and I at Hublander 2024
I honestly thought I’d be nervous – Especially around Sam … But I wasn’t. At all. It’s been said that he has a calming presence and I have to admit he does. Very relaxed. Very open. Very warm and welcoming! In fact, Sam reminds me of my very dear friend, Richard.
Richard is around 6’7 with blonde hair and blue eyes. He’s a genuinely nice, decent guy and Sam is exactly the same! Sam was lovely during our photo op and even got down on his knees for me! ( at the request of the photographer who said “He can get down on his knees for you, if you like!” LOL) We made polite small talk and both agreed that knees are overrated after the age of 40!
Duncan was a sweetheart and was just as nice! As you can see by my photo I completely forgot the “No Hugs” rule ( which was put in place to protect the Cast after David Berry tested positive for Covid) and kinda went for the head on the shoulder move – which is kinda like a hug for me anyway 😛
Next up was Charles VanDerVaart and John Bell!
Panel 2: Charles VanderVaart and John Bell
These two were a hoot! An absolute scream! They’ve literally become BFF’s and the way JB gives Charles such a hard time is the funnest thing ever!
It was at this point, the boys were given Tee-shirts to draw portraits of each other on and auction off.
It turned out that one of members of THE HUB team was going through a particularly difficult time and so, the tee-shirts were a way to raise much needed funds to help this member and their family. While I can’t remember the exact total, the money raised over both Sydney and Melbourne events was quite substantial and was definitely going to a good cause.
As the day went on, there were opportunities for photos with more than one Cast member – just as long as you had the correct token to do so. They were playing clips from 7A on the big screen in between panels so you could watch along while you waited.
I made friends with another lass in a wheelchair and her BFF . They were great fun! They were also both Peakers and we hit it off instantly! I just wish I could remember their names! They both complimented me on my Outlander Stickers on the back of Eleanor Whillie – in particular the S.H.A.Gger sticker! ( I.Y.K.Y.K)
The lines for photos were ridiculous! ( Massive shout out to Rod and Sarah for doing a brilliant job of sorting that mayhem out on the day!) and the only way to cool off (remember when I said it was 38c?) was ONE SINGLE stand alone fan at the entrance to the photo op area!
I will be forever thankful that Miss C and I took our own food to the event. There were supposed to be Food Trucks on site however, after a series of unfortunate events, there was a single ‘Food Truck’ that ran out of food by the time lunch was called.**
Add to this, the toilet situation was an absolute disaster. The Timber Yard had a total of 10 unisex toilets and 1 disabled toilet for the whole venue. Aside myself, there were at least 10 others who were in wheelchairs and several more who had walking canes or walkers. Trying to get to the toilet for anyone was a nightmare!
I tried twice to go to the toilet throughout the day. The first time saw me bump into Charles VanDerVaart who was on the way out of a unisex loo as I was trying to get to the disabled toilet on the other side. Apparently, someone has a photo of me chatting to Charles outside the toilets. I know this because they told me so. They also asked me if I wanted the photo. I recall saying yes.. but it never happened. Oh well. Nevermind.
I lucked out the first time – because it was in use. By the time I attempted to empty my bladder the second time – 6 of the unisex toilets were out of action and the disabled toilet was blocked and backed up!
Now, if you know me.. You know that I have an incredibly weak bladder ( TMI I know) and so, holding on for an entire day was agony. But, I managed… though not without complaint.
(There are some however, who were not present on the day, who will tell you that Sam Heughan has magical powers and by His sheer will alone- made it so I had a bladder of cast iron. That somehow I decided to ” Let it be known that ye verily I did forfeit my right to pee – less I miss a nanosecond of being in Sam Heughan’s company!” I assure you, dear reader that Sam Heughan DOES NOT have magical powers… nor is my bladder made of cast iron! The Women in my family possess no such thing!)
By this stage, complaints were coming in thick and fast about the lack of amenities, places to sit down, places to cool down and places to get food. Menu Log and Uber Eats made a small fortune from us that day, I can tell you that! Even the Cast had to order in as it looked like no arrangements made for them to have lunch provided for them – which is utterly appalling if you ask me!
Suffice to say there were 800 very annoyed people. Even those of us who bought our own food and drink found it impossible to sit somewhere and eat. With everything moving so quickly there was just not enough time to do so!
Anyway, here are my photos with John Bell and Charles VanDerVaart
Myself and John Bell at Hublander 2024! He autographed my photo with him. Lovely chap! Charles VanDerVaart and I at Hublander 2024
With the absence of David Berry (who very graciously signed photos to be given to VIP / Platinum ticket holders at the event) Duncan Lacroix did his panel solo. He regaled with stories of working on Outlander and other projects and answered questions from the audience. Unfortunately, his panel suffered technical difficulties – most likely due to the heat – so a large majority of it was unusable ( which is why only the Sydney panel that he did is on the USB)
“Everyone Needs a Murtagh” – Duncan Lacroix at Hublander 2024
He also gave us a designer tee-shirt and donated it to charity. Which was a lot of fun to watch.
It was during his panel that we found out Duncan was deaf in one ear and so everyone had to speak slowly and clearly. He handled it like a champion and his panel was enjoyed by all!
After a short break it was time for the man of the hour – Himself, Sam Heughan!
Sam was accompanied by his handler, Steve. Steve took over MC duties at this point and made sure Sam was asked either funny, interesting or intelligent questions. (If Steve didn’t like the question he threw it away! LOL!)
Sam answering a fan question during his solo panel at Hublander 2024
Sam talked about Outlander, his book Waypoints, His Whisky, His Gin, MPC and other projects and things that he’s working on – especially after Outlander ends after season 8.
Steve was hilarious throughout – offering his take on various stories and what working with Sam was like. Despite what you may think, Steve is a wonderful guy and very funny. I understand now why Sam always wants to work with him.
The highlight of Sams panel though, was when he got a lass on stage to sing the Skye boat song and called David Berry on his phone so we could all say hello and send him well wishes!
After Sam’s Panel ended it was time for the autographs.. However, that will need to wait until the next installment of this blog!
As always, thanks for reading
Ceej
**Correction: There were 2 food trucks on site. There was meant to be a 3rd but it was involved in an accident and couldn’t make it.
***A/N This part of my blog is HUGE so I have decided to split it in to two parts. Part one will be posted today – Part 2 will be posted later on in the week. **
Our day began with both of our alarms going off at the ungodly hour of 5am . After a rather restless night of sleep due to the noisy aircon ( It was also permanently set on “Antarctica” mode it was that bloody cold!) and the random noises of other guests at 3am .. we ( My Support Worker Miss C and I) were up and began preparing for the day.
As a Platinum ticket holder, we had to be there early. ( And by early I mean 7.30am) as the VIP Platinum panel was to kick off at 8am sharp.
So, after we showered, dressed, packed our lunches, bottles of water and ate breakfast – we bundled Eleanor Whillie into the back of the car and set off to Port Melbourne to a venue called The Timber Yard for a day of fun, friends and fangirling (Well, I did. Miss C was like my cool offsider in her John Lennon-esk type sunglasses)
The Timber Yard is located in Port Melbourne – just 15 minutes from Melbourne CBD. It’s easily accessible by car and tram ( although that means an extra 5 minute walk from the tram stop) and, ironically, about a block away from a Restaurant called ‘Claire’s Castle’ ( which considering what was happening there on the day – I found hilariously funny!)
We arrived at 7.20am. which meant there was still ample parking to be had. That said, the line for entry into the event was already snaking its way down the block and around the corner by the time we’d made our way to the entrance and joined the others in line.
It’s at this point dear Reader, that I’d like to point out that that the day before there had been another Convention – Hublander Sydney 2024.
That event spanned 2 days being the Friday night and the Saturday and when I tell you there were some bleary eyed travellers amongst the die hard fans there at the Timber Yard on Sunday morning, you’d be hard pressed to believe otherwise. Thankfully, the takeaway coffee was on hand and piping hot .. making all those red -eye travelers thankful for the pick-me-up.
Whilst waiting in line I met up with my friends Ziggy, Jo and Vanessa. Jo had bought everyone “Hublander Mugs” as a gift for all of us which was lovely. I also met Sandra and Leslie -Fellow fans and MPC Peakers. We’d been talking online for a long time so it was lovely to finally meet them in person.
And, just because this is my Blog and I can – Here is a picture of the Hublander Mug from Jo 😀
Hublander mugHublander Mug Front
Anyway….
Not only did Jo bring us all Hublander Mugs to celebrate Australia’s first ever official Outlander convention, she also blessed us with her PURPLE SLIPPERS! (IYKYK and if you don’t … Well, I’m sorry … That’s classified LOL ) .. but more about those later on!
Ziggy decided to rock a rainbow kilt for the occasion and she looked amazing. She also bought a special gift for me to give to Sam – which I was most excited about. Her Brother made it especially for me and well may I say it looked a million quid!
(Shout Out to Leatherman Jack on You Tube! He makes wonderful handcrafted leather goods. Check out his channel here: https://www.youtube.com/@LeathermanJack )
She had attended the Sydney event along with the others but despite being desperately tired, she was just as excited as I was.. not only because we’d be spending the day together but because it was the first time we’d seen each other in person since 2013 – when we both attended the Doug Anthony All Star reunion at the Melbourne Town Hall as part of that years Melbourne International Comedy Festival.
My outfit for the day was coordinated to match Eleanor’s colour scheme – A black shirt with light pink pants. Eleanor is black with pink side panels in the arms. So we matched perfectly!
As the line to enter the venue slowly began to move, I found myself under a tree .. and no sooner had I stopped there I was shat on by a bird!
Most people consider this a sign of good luck. In the Outlander fandom however, it is common knowledge that everywhere Sam Heughan goes – he is almost always shat on by a bird!
For those that know me ( and my history in this fandom) the fact that I was shat on by a bird, just moments before I was due to meet the Man in person – was no great surprise to anyone. That said, just about everyone rushed to clean me up which was hilarious and, after some Motherly magic ( You know who you are :P) any evidence that I’d been shat on by a bird had all but disappeared.
The panels were running late – Due to technical issues, the Cast running late and a mad dash to reorganise David Berry’s no show at the event as he had unfortunately come down with Covid, just prior to the Sydney event and could not attend the Sydney Hublander – let alone travel to Melbourne for his appearance at the Timber Yard – but the Platinum ticket holders and VIP’s were finally allowed to enter the building somewhere around 8.30am. Myself, Jo and my Support Worker Miss C had tickets down the very front in row A.
It’s fair to say that when you attend a convention, you’re bound to bump into all sorts of people. So, imagine my surprise when who should I see running the doors and keeping everything in an orderly, spit-spot and Bristol fashion – but my friends Rod and Sarah! I hadn’t seen them in years – Since we were part of a Pop Culture mash up show for the 2013 Melbourne International Comedy Festival / 2014 Melbourne Fringe Festival ( I am sensing a theme here somehow) It was in that moment I knew I was going to be OK. The convention was my first big “dose of peopling ” since before the Pandemic and truth be told – I wasn’t sure how well the day was going to pan out. Seeing Rod and Sarah gave me a sense of assurance and given there was about 800+ people in attendance on the day .. I was grateful for them being there.
We went inside and found our seats easy enough. The first panel was Sam and Duncan. That was the special VIP / Platinum panel for the day.
And the stage is set!
The panel was due to go for about an hour. With the first 5 minutes allowing the audience to take photos of the guests on the stage.
The MC was a lovely lady ( whose name escapes me at the moment) and she gave us a run down of the day and what to expect.
As the doors closed and the panel started .. I couldn’t wipe the smile from my face.
Oh, it’s that time again.. OK.. Cool.. Where am I? Are we still in January?
We are?
Oh Good.
It’s currently just after 11am on Saturday morning and I’m absolutely exhausted.
The last couple of weeks have been a major turning point in my life in regards to socialising and frankly, while I am happy that I have done all these things – I need a break. I need a rest. I need a Bex and a good lie down.
First, there was my friends 50th Birthday party. M and I have been friends since we met in … 1997 while we were doing a short course in something .. Office Administration I think, and we kind of just hit it off from the moment we met. We’ve known each other for close to 30 years .. ( Bloody hell, that’s a long time!) M was my Matron of Honor at my Wedding – 3 weeks after giving birth to her first Child “Pixie Nose” ( IYKYK) and so, when she pinged me on FB with an invite to her Birthday – of course I said I’d go .
We went to a Cafe/ Bar/ Restaurant/ Function Room place called CRAVE in Boronia. A and I decided to take Eleanor Whillie and see how she’d handle moving about a room full of people. ( Mind you, I’d spent the day in Eleanor already at Hairhouse Warehouse in Knox getting my hair done for the occasion. Shout out to the team for being super helpful and lovely while I was in there!)
And you know what? Everything went OK. M’s Birthday bash was a success and a great time was had by all.
Yesterday afternoon, was my Niece’s Engagement- which turned out to be a surprise Wedding ( A/N: My Aunty B and I called it months ago when we first received the invite in the mail. It’s not hard to put two and two together when the invite reads “Formal Attire” you know?)
And well may I say, the Bride and Groom looked lovely and happy and the afternoon/ evening was a success. Again, A and I took Eleanor Whillie to see how she’d handle the terrain ( It was at Settlers Run Golf and Country Club in Botanic Ridge) and I have to say she took to the grass and things fairly well over all.
When all was said and done, A and I were home by around 10:30 pm. Once all the things were done and we’d scoffed a pot noodle – It was around 1am when we finally face planted into bed and fell dead to the world asleep.
I don’t think we’ve got much of anything else planned for the rest of the weekend -which is good.
Next weekend is a long weekend … As its Australia Day long weekend . Haven’t got much planned either – but we’ll see what happens
To start with – The header of this blog has nothing whatsoever to do with the the subject matter – it’s simply a cool pic ( thanks to IG for the filter) and frankly describes how much I wish I could drink – Given just how much stress the NDIS has caused me in the last 5 days.
Five days ago I received an email from the NDIS regarding the outcome of my S100 application and then, everything went to pot.
(For those playing at home a S100 means a “Review of a Reviewable Decision” in NDIS terms. Frankly, after I read it, I thought someone was playing a cruel joke.. Although, to be fair… The NDIS is a governing body; ergo run by clowns .. so I really shouldn’t have been as shocked as I was)
The NDIS – National Disability Insurance Scheme is designed to support Australia’s Disabled and Chronically ill – giving them access to all the things, all the time with a minimum of fuss. It’s to ensure that the Disabled and the Chronically ill have a fair chance at life and oh.. hang on.. That’s on paper..Heh. Oops!
In reality however, it is a ginormous, twat-berking shamozzle of a shit show- that not only leave those of us who are disabled up shit creek without a paddle – but also our able bodied full time carers with nothing more than a leaky canoe with no lifejackets to help us out.
At time of writing this blog, the NDIS is going through a massive overhaul of how it does things, why it does things and when it does things which means .. everyone and their dog is confused!
Hooray!
Here’s my story. ( And the reason behind today’s blog)
So, I got to the NDIS in 2022. My funding was just over $75K for two years.
Pretty much straight away, I began a “Change of Circumstances” because there was no way I could stretch $75K over two years.
At this point though, my Allied Health providers( My Chiropractic, my Remedial Masseuse, my Podiatrist, my Psychologist, my Physiotherapist, my Occupational Therapist and my Exercise Physiologist) were being covered by the NDIS as enough medical evidence has been provided in my original application for them to be so.
After almost a year of pushing for a Change of Circumstances – it gets approved and I end up with just over $159K over two years . This allows me to purchase Eleanor Whillie ( my Electric Wheelchair) a DAY CHAIR ( that I am STILL waiting on) and a pair of shoes from Dr Comfort. *
On this plan however, ALL of my Allied Health services have been dropped..well, nearly all of them. They’ve kept my Occupational Therapist and my Physiotherapist in. This is great and all but… Hello? Really? Are you kidding me? They’ve also included ( as a money saver, they tell me ) a TherapyAssistant.
I have no idea who or what that is.
I ask around .
No one has any idea of who or what a Therapy Assistant is. Like, literally nobody!
No one on my team has a clue. There are questions asked :
Are they a T.A.F.E Student? A Support Worker with benefits? Who or what are they?
Eventually we turn to Google and look up this mysterious profession. It doesn’t take long to realise that a Therapy Assistant is a person who comes along attempts to be a whole lot of Allied Health providers all at once – (while getting paid less than an Allied Health provider, I might add – hence the “Money Saver” angle they try and sell you) and their job is to try and implement all the things your Allied Health provider does without all the experience that goes with it.. Or, something like that anyway.
Joy.
At this news I completely lose my shit and have a breakdown. I am at a loss as to how I am going to cope with having to pay for all of these services ( I mean, I have my Allied Health team for a reason, guys! And while I’m at it.. What in God’s name I am going to do with this Therapy Assistant funding??) given my Husband and I are not made of money and have only just managed to clear up our last lot of debt. I lodge a complaint with the Office of The Honorable Bill Shorten MP and a representative from his office advises me that my Allied Health invoices can continue to be submitted and paid for under the NDIS
In the meantime my Support Coordinator and I take steps to lodge an S100 – A Review of a Reviewable decision. We have 100 days to gather all the required information to support our argument that my Allied Health providers are imperative to my continued well being and continuing to function etc etc
We began that process in August this year. It’s now December. Five days ago I got the email. In this new, new, new plan I now have just over $206K over a two year period.
As far as my Allied Health Providers are concerned – They’ve kept my Podiatrist, my Physiotherapist, my Occupational Therapist and 2023’s Money Saver of The Year – Therapy Assistant– in … While giving my Exercise Physiologist, my Psychologist my Remedial Masseuse and my Chiropractor the ass claiming either that “Not enough evidence was provided” or “We believe an Occupational Therapist will suffice in these areas” which is an absolute load of bull-twang. There were 40 very heavily worded, exceptionally well written documents submitted for my S100 .. and, frankly, what it all boils down to is one extraordinarily lazy NDIS person by the name of Neerusha who skimmed the whole lot because they couldn’t be bothered to read it properly.. Thus here we ( my Support Coordinator and I) are again. Another 100 days. Another round of reports and supportive letters explaining why these things are important to my mental health and general wellbeing .. Etc Etc Ect …
It just never seems to end.
Thanks for reading
Ceej
*I wish there was some kind of sarcastic font for this.
Have not long gotten home from doing the grocery shopping with Hubby and running a few errands down at Chirnside Park.
For those not familiar with Chirnside Park, it is one of many local shopping precincts near my house ( I live near 4 such places) and while its smaller and doesn’t boast as many shops as the others, it is the most disabled friendly by design and thus I get to zoom along in Eleanor Whillie and join in the fun.
Today I also purchased a new handbag ( one that’s easier to carry while going out and about) a new hat ( more about that in a moment ) and a quick pit stop at SpecSavers to get my glasses adjusted, cleaned properly and get a quote on some potential transition lenses or sunglasses.
Todays weather has been nothing short of spectacular and to be able to go out in it – despite the obstacles I currently face (and believe me, there’s a lot) makes me very happy.
However, I digress. Today’s outing is not the purpose of today’s blog. By now, I would wager, you’re probably wondering what the title of today’s blog has to do with my shopping extravaganza and the answer, dear reader, is nothing. Absolutely nothing.
It has everything to do with what I got up to yesterday!
( And if you’ve read you’ve read this far, then I congratulate you for sticking it out with me)
Park Orchards Market is held the 3rd Sunday of every month 10am -2pm at the local Primary School
It was my first time at a local market and I have to say I thoroughly enjoyed the atmosphere. It was also my first trip back to Park Orchids (it’s literally 15 minutes from my house) since 1995. Back then, it had one bus that travelled there every hour and it was one of those small *blink and you miss it* places that no one really paid any mind to – unless you had to go there.
In the 20 years since it has grown to be quite the affluent suburb where the locals know everyone ( and their business apparently .. but you didn’t hear that from me) and houses are worth in the vicinity of $1 million dollars + on any day ending in Y .
The people of Park Orchids seem to be quite the snobs .. what, with their fancy cars, designer dogs ( in lieu of designer children) and the suspected illicit affairs taking place right under your nose – just as you sit down for lunch. (Long story, I’m getting there, I promise)
That is, except the lovely folks at the Park Orchids monthly market. As I have already said, it was my first time at a Market like this and I was pleasantly surprised at what I saw there.
Through my NDIS plan, each fortnight I am granted Community Access with a support worker. I have an allocated 5 hours whereby I can go out and do some small activity independent from my Husband -who is also my full time carer – and give him a break from taking care of me. I can pretty much do as I wish – Go to the movies, do some shopping, visit a reserve, go out for lunch, visit a friend – any number of activities as long as it’s none to costly and can be completed within the allocated 5 hours
Yesterday’s choice was the Market. There were plenty of things to look at and peruse as well as live music from a local musician. Entry was free (bar a gold coin donation) and plenty to eat and drink .
Members of the CFA popped in ( For my American Readers – CFA stands for Country Fire Authority. They are a group of volunteers who are trained as Firefighters to assist during our Summer bushfire season) which kept the little ones entertained for hours!
Myself and my Support Worker “Miss B” spent a good few hours there . I went away with a lovely scented candle, some homemade Baklava and Turkish Delight and a jar of Christmas Pesto (your basic basil & pine nut mix combined with sweet chilli and cranberries – Bloody delicious!)
Pleased with my purchases, Miss B and I decided to go and find a local Cafe for lunch.
We found a small place just down the road and around the corner (Eleanor Whillie and I had an interesting time navigating the wee bumps, cracks and dips in the pavement) and although they had no disabled access to speak of – they were soon able to rustle up an extra table from inside and bring it outside.. which was nice of them.
We placed our order ( Two Chicken Schnitzel burgers) and waited. ….. And waited ….. And ..waited. Almost an hour after we placed our order our meals finally arrived. We thanked the waitress?? Owner?? I dunno .. and began to eat.. Only to discover we were not given any cutlery! Not a knife. Not a fork . Not a spoon. Nothing.
Thank God for fingers .. am I right?
So there we were eating our meager meal, with our fingers, in the well do to suburb of Park Orchards, surrounded by snotty nosed well-to-do’s with their designer doggo’s (OK, so the one we saw was cute AF and super friendly) all the while listening to ( not deliberately I might add) a guy who spoke a few too many decibels above fucking reasonable – discuss his vacation plans with his (future ex – I could just tell. Girl was bored and annoyed as hell) Girlfriend/ Wife/ Fling to Singapore over a cup of coffee.
While I won’t go into anymore detail – because frankly, it’s none of my business but ….Some things are best left discussed in private, you know what I mean? Not loudly at a Cafe with no cutlery ( did they even get a spoon, I wonder?) on a Saturday afternoon in a place where everyone gonna be knowing your business by the time you ask for the cheque.
Over all, it was a lovely afternoon and I am seriously thinking of going back. Everyone was super friendly there and I was so sorely tempted to buy one of everything!
I honestly don’t know how to start this blog .. other than by saying it has been one of the longest and most difficult weeks of my life
It’s been one of those weeks where I find myself wondering what it was I’ve done that was so God awful wrong that life felt like it needed to kick me in the teeth multiple times before throwing me head first into a bin and telling me to make sure I took myself out.
Pretty much, yep
At the time of writing this blog, I am all over the shop as far as the NDIS is concerned. In short, I have all this amazing funding – but no way of being able to spend it (How it NEEDS to be spent)
Allow me to explain.
I have been on the NDIS for approximately 15 months. In that time I have had more ups and downs than a Yo- yo and it’s not only left me exhausted to the point of delirium – but more confused than when I started and at a complete loss how some people are
A) Able to make their skin stay on and
B) Remain actively employed.
When I first applied to be a NDIS Participant (as we’re known) I was accepted due to the fact my Allied Health Providers had given sufficient evidence that proved they were, in fact, treating me for my Cerebral Palsy.
Cool beans. Excellent. So, I have my Exercise Physiologist, my Chiropractor, my Remedial Masseuse and my Podiatrist all covered by the NDIS. Hooray!
Over the next few months we bring in an Occupational Therapist, A Physiotherapist and a Psychologist and everyone is all going about their business and getting paid all while doing their bit to improve my mobility, my mental health and my overall well being.
(For most of my time on the NDIS I’ve been fighting for a Change of Situation- which means my current plan needs to be looked at, reassessed and a decision needs to be made as to whether or not an increase in funding is required. At time of writing this blog -I have been granted extra funding – we just need to remember that)
So, here’s where things stand.
In my new plan I have funding allocated for my Occupational Therapist, my Physiotherapist and some new dang-fangled individual called a ” Therapy Assistant” and between the three of them – they are supposed to better improve my life. Meanwhile, my Chiropractor, my Remedial Masseuse, my Exercise Physiologist, my Psychologist and my Podiatrist have all been given the ass with the NDIS claiming “There is no evidence to suggest that these services have helped prevent the deterioration of the Participants current condition”
In saying that, InstaCare – the NDIS provider who pay all my invoices for me – claim that all my Allied Health providers are there and accounted for and can, as per normal, submit invoices for payment and, according to them.. I have enough funding over the next two years to cover those costs.
Consequently, seeing as everything is as clear as mud at this point – it’s now pushed through what’s called an S100 (a review of a review) which means more letters of support, which means more documentation ( that may or may not be read) which means more waiting around while things are discussed, debated and determined which means I am yet again dicked around by a Government department who couldn’t organise a pissup in a brewry.
Thankfully, I have lodged a formal complaint with NDIS Minister the Hon Bill Shorten MP – or his office anyway- and they have informed me they intend to respond to my concerns no later than Tuesday this week.
I have no idea how long any of this is going to take- but it’s gonna be a long and bumpy road to get shit sorted out.
In other news, yesterday I got to go out with my Support Worker ‘Miss M’ and she took me to get some desperately needed underthings. Much to my delight,I found some that were brightly coloured and ridiculously comfortable! (Not to mention reasonably priced to boot. So yay that!) Shout out to the lovely staff at Femmeline in Main St Croydon for their helpful staff – especially since I was in a wheelchair- and amazing expertise in helping me find the most perfect fit! It was also while there that I found out that there are 28 Cafes in Croydon and ‘Miss M’ and I decided to visit one called “The Famished Wolf” for a bite to eat. ( Side note: Between leaving The Famished Wolf and getting back to my house we counted 9 Cafes in Main St. We’ve decided we’ll go back sometime soon and find the rest!)
I was having quite a good day until late yesterday afternoon when I received a message from my Sister telling me that our Grandfather (on my Mothers side) had passed away earlier in the week. Last Tuesday in fact. The only reason anyone in our family found out was due to the fact a distant relation contacted my Mother to pass on condolences.
We have since found out my Grandfather had not been well for quite some time – Throat Cancer – and a few weeks prior to his passing he had also had a fall and fractured his hip. Our family was not made aware of any of this, during this time, and I must confess to being a little upset about it. *
I’m sure His family had their reasons but still, when something like this happens you would think they would at least reach out personally and inform us themselves.
At this point we have not been made aware of any funeral details so we can do is wait.
I guess we’ll see what the week brings eh?
Ceej
*For those playing at home my Grandfather was Married twice. Once to my Grandmother (Dec) and then to Nanna P . Lovely woman I thought. **
No, this isn’t a post about the Great Beardy Sky man – so back away with your precious bibles and sit down.
Nor is it an Outlander reference (IYKYK) because frankly I’ve dealt with enough emotional turmoil this week and I have no desire to self inflict anymore on myself right now. (Look at me taking the advice of my Therapist and not punishing myself! Whoo- Hoo! Go me – Oh.. wait.. No …wrong kind’ve … You know what? Never mind. Don’t mind me… I’m FINE!)
Despite the image header chosen for this blog ( Why do I do this to myself – JHRC) this week’s blog title stems from the fact that this week was a week I lost faith in not only the system ( The NDIS) but also people in general.
To begin with, on Thursday Aug 3rd 2023 I had my Change in Situation meeting via the NDIS. For those that are not aware, a Change in Situation occurs when someone’s NDIS funding has either run out early or is deemed inadequate for the person’s needs. Evidence needs to be provided of course and if successful- the application is renewed and funding is increased. That is the short version . And, in a perfect world, the short version would be all it would take to get you over the line.
Unfortunately, this is the NDIS and naturally if you’re not prepared to jump through hoops while trying to make sense of something that have been lost, found, copied, faxed to a completely different office, left sitting on a desk for three months before being buried outside, forgotten about, remembered again only to be made triplicate and then those triplicates duplicated for security reasons before being handed to you to sign off on with a BIC pen that ran out of ink 2 weeks before your scheduled appointment.
Okay .. so I may have exaggerated that slightly but given that this is my second Change In Situation application that took seven months to complete and submit- (even the submission was not without its complications) it’s closer to the truth than anyone would care to admit.
Anyway, my Support Coordinator G and the her Manager J joined the NDIS representative and I for the meeting at the required time ( G in person J via TEAMS) and off we went.
The next 3 hours were excruciating to say the least. I swear as I sit here and write this – I have never heard someone speak so much unnecessary gibberish in all my life! As the meeting wore on – I could honestly feel my brain packing a suitcase and telling me that I was entirely on my own as it DOES NOT get paid enough to put up with that type of shit! (And honestly, if it left at any point during those three hours – I would’ve given it a standing ovation)
By the time all was said and done – Myself, G and J felt we’d been pulled through the ringer and the three of us spent the next hour trying to figure out what the heckin’ heck just happened and what the next steps were moving forward. (Hint: We still don’t know and there’s still another 14 days to wait. With that and a provider of mine with two unpaid invoices outstanding due to my funding allocation being exhausted – the next 14 days are gearing up to be a whole lot of fun indeed)
If you asked me just a few days ago what I had hoped to achieve with that Change in Situation I would’ve told you the following:
Access to the community via a broader range of activities ( Over time. Small steps required given that I’ve spent the better part of 3.5 years at home unable to get out without help)
Respite – The ability to be able to go away on holiday and enjoy myself with friends. ( I’ve not done this in almost the same amount of time)
More help via Support Workers
Eleanor Wheelie! (My long awaited electric wheelchair)
Proper time frames for when things were going to be happening/taking place
Instead, what I got was :
A whole lot of gibberish that made no sense
The feeling that the NDIS representative had no clue what they were talking about
The moment I heard the rep say the words ” Oh wow… I’m just .. trying to ..Imagine your life” I knew the entire conversation was a lost cause and that G and J would have to go in and fight harder for what it was I wanted.
Being told a whole bunch of things weren’t going to be requested because the NDIS delegate wasn’t going to approve them due to ” trying to find the best value for money”
Being made to feel like I was being ignored and overlooked
No idea about the when/ where/ how and why of anything
That night I fell into a funk and I haven’t really come out of it . I’ve learned not to get my hopes up. I’ve learned that you cannot rely on a system that was designed to help those of us with lifelong disabilities ( Thanks a lot Liberal Government) and that just makes me really sad.
If I’m honest, at this point in time, I expect my funding to be cut to even less than it was the first time around and the whole things just turning to shit . I’ll keep everyone posted with updates as things progress…
But for now .. I wait.
In other, less stressful news (I hope) I have taken a mini Social Media hiatus for the month of August. The last time I did this was a few years ago and I found it very beneficial for my mental health. I have deleted TikTok, Tumblr, Facebook and Twitter (X) because, with the exception of TikTok which was proving a distraction than anything else…. The other platforms were making me angry. For a number of reasons ( A majority of which have to do with the Outlander Fandom – and while I will not be discussing specific situations today – let’s just say I am better off not having access to those platforms at the moment. For everyone’s sake.. Not just my own.) and so, taking a well deserved break is just what I need to refocus and recharge the batteries.
At the beginning of this blog I said it’d been a week where I’d lost my faith in people but that to is also Outlander Fandom related BUT… given that it’s almost 3:30pm on a Sunday afternoon … I am going to put that off till next time. You’ll want to pull up a pew for that one, I assure you!
Bitz 'N' Blogs with CJ Cross 