Project Managing

Published December 7, 2025 by helentastic67

Project Managing

Lately, I’ve cut back on my appointments like physio, hence the lack of motivation or time to blog. I am not looking forward to the grumpy chastising from my acupuncturist who I should be seeing weekly as he is free. He is a GP and covered by Medicare so I really should be getting my ass there. And I think I haven’t been since April or earlier, but while I’ve been skipping my physio/neurophysiology and a few others, my pain increases as does the discomfort. It’s all been because they are using my funding to do report writing. Yes, you heard correctly. I’ve had to prioritise reports over pain management because I’m going to review again with the NDIA! Because I’m running out of funds.

I’m currently on my third Support Coordinator, who is like a case manager. Except, mine has run out of funds to do her job. I’ve been nudging with emails most of this year for her to get reports to people that are doing things for me anyway. So, I think every year I do more and more of that role. I’ve finally got a new Gun of an OT.

I’m hoping now, just celebrating the one-year anniversary of being in my forever home, that I can have a mobility scooter and somewhere safe and secure to keep it and charge it. And the NDIS funding in which to make that all happen and finally, not me to project manage all of that to make it happen. Even getting the Owner Corp and the board of residents, on board to allow these things to happen is a hair-pulling exercise as my existing shed is too tall and gets in the way of the sprinkler system.

I think the OC is largely against my installing a shed because it might set a precedent for others, also wanting to put up sheds. That whole “but she’s got a shed mentality…?”

In the last apartment complex the OC asked what I was storing in my shed. I didn’t immediately take their interest or concern seriously. I answered with my usual wit and humour “I’m not making Ice in there!” Breaking Bad made it seem like a good starting point to run successful manufacturing enterprise in a caravan in the desert. People these days make ice in rental properties which means they are no longer safe to live in. My real answer later was “My mobility scooter, gardening supplies and sometimes my excess tinned tomatoes and passata and panettone” I offered to use the light from my scooter to help better see what was really in my shed and I provided them with photos. It was exactly as my last statement and they dropped the issue.

Problem Solving

Published November 10, 2025 by helentastic67

Problem Solving

I’ve been trying to solve a problem in my new home since moving in last November. It’s such a mess.

There are so many moving parts and potential solutions but more people to ask permission from before implementing solutions to the problem. So, the work around feels like a real fuck around.

Sometimes, I wish a clairvoyant or divine entity would just point you in a direction and narrow the field for you.

Here’s a real estate example which has been the perfect example whenever I’ve been on the hunt for a new home. I gave this example to a friend earlier:

If you wanted to only live in Ivanhoe and you had a set budget, and you wanted a certain number of bedrooms, bathrooms, car spaces, etc, etc. And if you couldn’t budge on any of those parameters. Maybe money wasn’t a limiting factor and you absolutely had to live in Ivanhoe; you would spend what you needed to spend.

If budget was important you would start to compromise on different things depending on what you could live with. Maybe less bedrooms, or whatever, but eventually you didn’t even live in Ivanhoe.

Maybe a clairvoyant could point you in the right direction and suggest Ivanhoe. Yes! But start looking for something a little smaller, or …..xyz. Then you wouldn’t waste your time trying to find all these other solutions.

Just an FYI, I didn’t have Ivanhoe money so I’m just giving that as an example. People that live in Ivanhoe have Ivanhoe money. You can’t hate them. You just appreciate them.

This is one of the major things on my list I’ve been chipping away at and made all the worse by a “friend?” suggesting I needed to get on my issues, like I was being lazy? Who needs enemies when you have friends like this?

So, the problem? I feel a part two coming on

I’ve had my mobility scooter AKA Hellonwheels for the last 15+ years and every time I’ve moved, I’ve had varying degrees of storage and weather proofing, security, etc in storing my Hellonwheels.

Some places I’ve lived at were easier than others for scooter storage alone. One house I rented didn’t have room to put my shed up for the scooter, so I ended up putting a BBQ cover over the scooter in the backyard close to a power supply and using locker straps around the cover to secure the cover and waterproof my scooter. It was a fuck around solution.

At my last rented home, an apartment, my car space didn’t have power so I was able to swap with a neighbour so I could erect my shed, park my scooter inside and charge it. I also stored my gardening supplies, and at one point my oversupply of pasta and tinned tomatoes, and my panettone.

I am such a Nonna!

My landlord queried what I was storing in my shed and I suggest Owner Corp and landlords do not have a sense of humour. Don’t say what I did? I responded to their original query that I wasn’t cooking meth or anything. My shed wasn’t big enough for that and I ended up using the lights on the front of my scooter to illuminate the inside of the shed to show them the contents. Seriously!

And while I was living there, I could go in and out of the only entrance to the garage on my scooter, I could go straight into my shed or go up on my scooter in the lift without causing damage. Parking near my apartment door and transferring items gathered into my apartment one item at a time before returning my scooter down to the shed to store and recharge. When I had more to take up and less time, I’d unpack items into a market trolley I stored in my shed and take that up.

Every pedestrian entrance to that complex had zero access for a scooter, and therefore no access for a wheelchair, except the B1 level or the carpark, just to give you a bigger picture.

Good thing I only have used my scooter for solo shopping missions locally as well as prompt local appointments where I get to maintain a level of independence.

So, when I moved to my forever home, the real estate agent showed me the apartment. My car space, the lift, the direction of the closest power supply to my car space and basically gave advice on both my disability and access to things he had no working knowledge on and directed everything to be sorted by the owner Corp when the time came.

I don’t know if anyone else has had to deal with an owner Corp, or had to solve problems of access for someone with a disability? And under the NDIS I have people for that right?

I prompted my support co-ordinator if she could get on that and sort things so when I moved, I wouldn’t lose my independence around needing my mobility scooter. After multiple prompts I was provided with a company name and the comment that they were expensive.

You might imagine the title of that person, being a Support Co-ordinator would mean they um, Support and Coordinate?

But it often means THEY DO NEITHER OF THOSE TWO THINGS!

So…

Circle Back to 2024

Published February 17, 2025 by helentastic67

Circle Back to 2024

So, I thought I should circle back to part of why 2024 was such a shit show. I started the year with a really good support coordinator. I thought no issues on the horizon so why not bring in a third carer agency to take the pressure off one of my other two, so I get some more variety with carers.

Since the start of Covid I was getting one carer for four shifts per week which I worked out quickly was three too many.

Having carers over the year you work out over time and pretty quickly who you mesh well with, who you can rely on and who you can be flexible, because sometimes it is me and my expectations. Can I work around different personalities, or should I not need too? When I asked if I could have less of this carer, I was told it was her or no one. I was also told they were recruiting. The number of times, I’ve been told they are recruiting in the last fifteen plus years, if I had a dollar for every time I’ve been told that I would be living in a house not an apartment.

Alas, my support coordinator No.1 for 2024, set me up with a new agency, we did the three-way zoom intro meet and greet thing. (Never done one of those before) Then I went to the countryside for about four days to help clear out my father’s house in late January. WHEN I RETURNED TO PULL THE TRIGGER ON THE NEW CARER, I WAS TOLD SHE HAD TAKEN EMPLOYMENT ELSEWHERE! Then, I was told they had a lack of carers in my area and would keep me on the books. You bet I was told they were recruiting in my area.

Just a FYI. It’s now a year later and I’ve not heard from them again. So, I digress, my really good support coordinator was promoted to Team Leader. It is the only progression for that position in a company, so I think it was my third in about five years I’d lost my Support Coordinator to being Team Leader. Although they always moved on, I gather soon after.

AND YES, IF I HAD A DOLLAR FOR EVERY TIME I’D BEEN TOLD THEY WERE RECRUITING MORE SUPPORT COORDINATORS ID HAVE A GOOD HANDFUL OF GOLD COINS.

The new support coordinator, in July we were already discussing and planning a request for a review of my NDIS funds.

The Average Day of Getting Sh*t Done

Published August 5, 2024 by helentastic67

The Average Day of Getting Shit Done

Today’s title seems like an angry way to start but it is what it is. Yesterday I went to get out on hellonwheels when the poor girl could barely get out of B1, (basement carpark) so after limping back to my shed to put her back on charge and confirmed she was actually charging (it was), meanwhile my phone in my bag was going off, surprising, considering the amount of concrete I was under.

Back upstairs, I called to reschedule my physio appointment again. I should be getting there to get electrocuted every fortnight but lately every time I book my appointment, I end up needing to bump it, to prioritize something else.

Then, I go through my mental list of the calls necessary to get my scooter back to being a problem solver and not a hindrance. So, I call the people that used to solve it before the NDIS.

I start all my calls the same way, “Hi, I’m Helen, how are you?” And after I start this way, they usually assume I’m calling on someone else’s behalf, WTF! She is ME people!

I am distinctly aware most people don’t call on their own behalf, but this is how I get shit done and I can’t rely on anybody (should I finish the sentence there?) to do all the things for me to keep me independent.

Don’t take my grumpy tone as complaining, I’m very appreciative I can do this stuff, but I could do without the Busy-Work.

Part of my Existential Crisis series

Published September 10, 2023 by helentastic67

Part of my Existential Crisis series.

Sometimes, with advocacy it’s really hard to get the point across to people who you might be applying for funding or navigating the system to get the care/help you need to survive.

Funding, whether it’s DSP or NDIS the people who make the decisions about if you even qualify or not, don’t have the same lived experience that you do? it’s helpful to

Do I hit them with all the information so at least maybe something hits? or

2. Cut things back to the basics.

What!? You didn’t expect I had the answer to this did you? I live in this space every day of this TMI (too much information) territory, or do I give people as little as possible?

It never ends.

How much do I need to tell people to get from them what I need, for them to do their job properly, for me to do or achieve what I need to do to get through the day/week, etc. Just so I can manage to get to the next day.

It’s frustrating to think I’m not trying to do anything super amazing in life; go on holidays, have children, look after children, have a dinner party. I don’t know. what is considered normal. I just want to be able to do tomorrow, well todays been a lazy day so I should hope tomorrow I smash the shit out of the day.

And my goal is to at least be able to do that.

Hot Off the Press – 27th March 2023

Published March 27, 2023 by helentastic67

Hot off the Press

Reminiscent of days gone past, in my earlier Blogging days when one post each week unpacked the chaos, highlights and lowlights of my average week. 2023 seems to have stepped up a notch on my version of hectic.

Monday, had a day trip to Mornington for a meeting. Dropped some cash down there. Came home with a brand-new winter Doona cover and pillowcases. Still do not know why I keep buying the matching pillowcases as I only have one pillow on my bed these days. More than that, get in the way of me being able to see the bedside clock on the other side of the bed.
Also, got to Coffee Traders & Tutti – Fruity.

Don’t know when my migraine set in but it was definitely well rooted Tuesday. These days I have two kinds of migraines, Tuesday I had the kind I can still function doing walking/talking. Weirdly, it’s a pity because I had many calls and emails to do. The kind of calls I had to growl at people. By the time I’d made all my calls I was on a roll and prepared to volunteer to do others calls that required some growling also. My one appointment at home ended up getting cancelled as my young Neurophysio cancelled due to being ill. Me thinks being his turn to bring treats, again he begged off. I’m trying to teach him to take in turns. He’s a sweetheart and I like to tease the young ones.

Wednesday, a late start and off to chiropractor. Even more needed with the migraine. The kind that happens every day ending in “Y”.

Did a few chores arranging my standard gift for bereavement.

My uncle passed a few weeks ago. He had a very short time after diagnosis and then he was gone. Brutal! I didn’t get to go to his funeral as it was Interstate and family didn’t consider including me in their plans to fly. I had briefly toyed with going and taking a carer from Melbourne using NDIS funding. I still would have had to cover their flights and accommodation and funding would have taken at least $1000 hit and then I would have needed to hire a car, honestly. What a drama, so stressful. Even if I could have gone, I would have been so exhausted it would not have mattered, just might have been nice if it had occurred to others to offer to help.

Thursday, another day at home planning to execute my plan of World Domination, a little joke I have. Really, just a plan to survive day to day and make it through the week. Otherwise, a day of rest as my migraine continues.

Friday, my second chiropractic appointment and then and then the usual hunter/gathering including a trip to South Melbourne to see my hand specialist. Had a local anaesthetic then a cortisone shot for my trigger thumb. Not as fun as it sounds, even managed to fit in a fall on Friday, narrowly avoiding landing on a star picket. So glad I missed that.

Finished Friday heading to Collingwood to deliver the other Lilly to my cousin. Thanks to my evening taxi driver Young Deepak. Even Young John would appreciate him. He’s, our people. Dinner at 10pm, emails until late. Nothing new there.

This last week I’ve also been trying to get my head around a new piece of tech. A PVR, I suspect this added to my migraine but how can I tell?

The weekend I try to be as off-grid as possible. So, even Sunday night as I smash out this blog post, I’m already making my outreach calls while I watch a show in the background. At least I’ve a day at home tomorrow.

And my favourite thing about my Friday Wheel-Woman this week. And yes, it had AC and a CD Player. And it’s red.

Fingers crossed this coming week is calmer and less chaotic. Hope you are all doing well? Please hit Like.

Tuesday

Published September 20, 2021 by helentastic67

Tuesday

Had a crazy Tuesday this week. Now it’s Friday and I’m sitting at my fave café for what has become my new normal day here to lunch and write. It’s the Covid normal.

In my early days of diagnosis, I felt the need to explain my life was less Brain Injury and more normal and my first specialist explained I was a high functioning ABI.

So, Tuesday was a bit more crazy than usual. This is probably a good example of me being high functioning. Keep in mind, Helen is not a morning person.

9:15am – Usual carer arrives for Personal Care. She does all her chores and I do mine.

I make breakfast and sit to eat. (Slam down my entrée of pills)

Turn my phone on. It starts, the bells and whistles, texts and calls and messages. I don’t know why I need to go off grid on the weekend.

I call and negotiate with my young John to get me to my first of two appointments. He can squeeze me in.

11.45am – I’m meeting my Neuro Physio. He sits on the floor trying to stretch out my left calf and front ligaments.

I have been diagnosed with a clunky ankle. It’s an official medical term. It’s causing and adding to my knee replacement one day. It’s already nice and crunchy! (My knee)

So, he’s doing him. I’m doing me. I’m checking texts, sending texts, then I’m required to stand favoring my left side and sit, twist my upper body towards my left to help my leg and foot do leg and foot.

To be clear, all this teases my brain. It’s not super fun, because my right-side brain is saying “you want to do what? Get firetrucked!” (Trying not to swear!).

And I’m dealing with one of my two agencies to fill a shift, the following day on the Wednesday.

It’s a 6-hour shift where I get escorted out, I do the things, we have lunch either out or at home and I set them chores while I scooter out to other appointments, they don’t need to take me to. It’s also when I fit other things in where I need muscles and things that I can do by myself or on P.T.

It’s a 6-hour shift. The texts from my agency go back and forth. Eventually, I’m offered 3 hours which I later describe as like putting a band aid on a bullet wound. It’s a great image, isn’t it?

I was responding that I could offer their shift to my other agency, as in the whole shift 6 hours. What pretty band aids on either side of that 3 hour. I need the whole 6 hours.

I mention via text, I’m in the middle of something and I need to be present in my appointments, but then I get a rather long shitty text stating they had spent 4 hours messaging other carers and clients to find me someone. It sounds like they think I’m ungrateful. The grumpy text ends with an apology for the text. I am now getting busy – this is eight days after I started.

Hopefully I can do it justice. But otherwise, could be, I didn’t get to read her whole message. I got the gist and immediately texted my other agency and if the person was not in the office, I rang them directly.

When I rang, I could even interpret the pause and inner office convo that happened in the background. A carer they have been wanting to send me for some time, they were just waiting on an NDIS checklist.

I confess it’s been two weeks since that fateful day. So, while this may not flow seamlessly from the previous post, I hope you can keep up?

So, I text the agency who is choosing to do their job the hard way, that in the middle of two appointments I need to be actively present at. I’ll get back to them.

It does already look like I’m covering the following days shift myself another way. I flick a text to my other agency. In case that staff member wasn’t in the office that day, I quickly call.

“What’s that?” I’m on the phone while my Occupational Therapist, (OT) who I’m just meeting for the first time is with me. “No, I told her she could absolutely go pee.” Respectfully, that makes us friends for life.

I call the agency and I can tell exactly the conversation that’s happening in their office.

“Oh, send X, Y, Z!”

“Is that Helen? Just fill that shift!”

There is no better motivation than me missing a specialist appointment because their afterhours staff member fucked up my Monday morning. My Botox appointment was rescheduled for two months further away. Botox keeps my left toes from curling (I know. What?). Yes! Botox in my leg.

Anyway, yes. The NDIA survey has been completed and X, Y, Z can cover my Wednesday shifts until my other agency can cover it again.

After my OT appointment, I head out and call my Heidelberg taxi driver. Young John is best at this time and so is Sean!

I hoof it to my far local pide dealer. Pide is not code for anything. It’s just where I get my vegie pide from. Another taxi driver has arranged that I can wait around the corner to make life easier.

On the drive home (10-15 mins) I text the first agency. I confess I was pretty grumpy earlier and wished to call my support coordinator to growl at the agency because I just didn’t have the bandwidth to give the polite diplomatic response.

Yet, I messaged something along the lines of, ‘I appreciate how hard it is to fill shifts when my regulars are away or don’t have a weekend. Then something that I genuinely did appreciate her efforts. Despite that, rather than ring me first to ask if she could wriggle things so she could cover three of the six hours of my shift. Would it be enough?

Sometimes it is but this particular day, I had placed other things in around and in between the appointments that required wheels and muscle.

I did all of this with a migraine.

So, that shift was moved for a month or so to another agency.

The following Tuesday I received a message asking if I expected them to cover my Wednesday. I had to remind them I’d moved it temporarily. This is what happens when someone tries to cover a bullet wound with a band aid.

Hot off the Press – 15th June 2021

Published June 15, 2021 by helentastic67

Hot off the Press

Change does not come easy.

So, I guess my posts these days have become more of a Hot Off the Press edition. Today, I’m writing on a Friday morning and every day this week I’ve been needing the pennies to stop dropping if you feel me.

There is just something fucking new every frigging day, I’m up to pussy’s bow, the end of my rope, not sure my nerves will cope with much more.

You may be aware, earlier this year I may have mentioned my shrink (makes me sound crazier). My psychologist is wanting to retire. WHAT? I know.

She’s mentioned for a while now, over more recent years and I’ve been in denial, obviously at some point she decided she was more and more serious and in 2021, it’s happened. She’s winding down. Very sad face!

You see, I’ve been seeing her for 13 years, I know, still not fixed (That’s a mental health joke!). I tried to entice her to stay, but I haven’t unpacked my baggage from my teenage years yet. I think we all know I have, but she could not be encouraged to work forever.

I asked if I could have half my money back, as I’ve got to start again with someone new.

Anyway, this week I found out why I’ve been unable to nail down my Support Co-coordinator (fancy name for a case manager). I’d been told she was sick, I now also imagine she’s been doing a job trial for her new job, because she’s leaving. Meanwhile, I don’t know if my new shoes have been paid for? Well, they haven’t and I guess now, I’m making sure all the wheels are turning.

Because the NDIA makes sure everyone else gets paid, even if they haven’t been doing their jobs. So, of course I started making calls. Like I don’t have enough to do already? FFS!

Have been meaning to do this blog post for days and yesterday I realized why I hadn’t, all the pennies had yet to drop.

Thursday, found out I’m also getting a new Occupational Therapist (OT). Are you breaking up with me too? So yes. She did too. I’d only had this OT a few months as I’d finally kicked the last rubbish OT to the curb.

2020 is still kicking me in the pants and I’m over having to rehash all the things. FFS!

I need a cheat sheet!

Wednesday, I heard (got a text!), I’m at 81% of my year’s funding and it ends in December. So, I need a review and my support coordinator better bring her A-game.

The NDIA like to give you just enough funding to cover you for 10 months of the year and then you have to go beg for more, by which time they have moved the goal posts to mean you can’t have what you previously had. I also heard the NDIA has trialed a new ‘thing’, it’s called Personas (Independent assessment) and an algorithm.

It’s just a funny way to put us all in little boxes as if we need the same things. We will all hurry the fuck up and go do study, or just get a job and not be a drain on the Australian government. It’s like they realized people with disabilities deserve a normal life and things and human rights. Until they realized how expensive having ethics is. Then they’ve tried to take out the human element so they can be more economized.

Advocacy never ends does it.

On the upside, Smith Street in Collingwood was voted the best street in the world! Voted by the editors of Smith Street has been named the coolest street in the world (timeout.com)

I got to catch up with Noelle last night by phone. I’ve started calling her every few weeks to chat. We were commiserating over how bitterly cold it got all of a sudden. Winter has hit. And Melbourne has come out of lockdown 4.0. We still need to wear masks and Noelle is in Sydney and they do not.

So, I just tease her at least we have heaters in Melbourne. They had their coldest day on record in 37 years yesterday and the rivalry continues between Sydney and Melbourne.

We still have better coffee, art and street culture. I mean they don’t even have a National Gallery, it’s in Canberra. WT Firetruck!? (Trying to swear less, is it working?)

We have the MCG and the laneway street art; Melbourne has all these things. Just saying.

Trying to end on an upbeat.

Botox

Published March 29, 2021 by helentastic67

Botox, the Bottom Line

So here we are again, so are the days of our lives!

I’m off for my 4-6 weekly pilgrimage to my GP. He is often/usually/generally/ always my first point of call for getting stuff I need (handy hint!).

Today I’m going to be asking him to help me advocate for me to get more Botox in my leg. I know it all sounds great to put it in your face, however I think it’s a waste of money for 30-somethings to spend, in order to age slowly.

Young people! If this is you? We all age the same, we all go in the ground eventually and Botox is the most toxic thing you can put in your body. I’m just saying, don’t do it for vanity. It’s better for people who need it for medical reasons armpits, legs, arms, etc.

Now, you may imagine Helen seems to have it together when she needs stuff and she has a voice and words, so why do I need my GP for this?

Well firstly, when people want you for a trial that can give them research money and good results (Pick Helen!!). When the research is done, why didn’t you give what you promised? The hinged AFO the appropriate shoes and the overall result being not to need a knee replacement one day.

That is the bottom line for me needing Botox in my left leg. They tell me I don’t need Botox, they even tell me since I now have the correct AFO and shoes.

Yeah! Thank you NDIS (not)!

And I don’t let them forget it! They double down and tell me I don’t get sock fluff build up inside my AFO, so I mustn’t need Botox. Then they even mention I haven’t had it since 2017. Therefore, I really mustn’t need it.

Hot Off the Press – 19th May 2020

Published May 19, 2020 by helentastic67

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!