Hay Fever
I’m writing at my favourite café and a woman sneezed. I gave her the appropriate ‘bless you’ in a non-religious way.
She disappeared to get a napkin (ouch) and upon returning, mentioned it was her Hay fever. Then she stated:
“It’s so debilitating”
Mmmmm…. Ok, it’s shitty, I agree, but debilitating is a strong word. Hay fever can suck. It really can. In Melbourne there is a season where it can kill, but this woman’s hay fever to me feels like a first world problem.
Somebody
There are times I sit on the writing a post until I can do it justice. This is about both my absolute horror at disability service and about why I appreciate and need to be treated like a normal person. Or at least like I might be a working, contributing human being in society.
For want of a better name, I’m calling this person “Somebody”. Somebody was a Case Manager I once had. Somebody wasn’t a great Case Manager, but she/he was a reasonable person and I think she/he knew they could share with me their shitty work day, because I would emphasis with both them and the client.
Somebody had an appointment with another client the prior day. I imagine it was a lot to deal with as they were still processing. She/he had gone to see their client who lived in a group home.
They walked in expecting just their client and instead was greeted by the CEO of the company, the site manager and about four other people that prompted me to say ‘Got it’. Top heavy management, sure. Oh dear, this did not sound great, then Somebody paused, seriously debated if she/he should tell me. She/he shouldn’t have, but she/he did and I gave them the grown-up empathy and opportunity she/he needed and wouldn’t dare name or shame them or who they work for. That said, some stories have to be shared.
Somebody walked into this meeting unaware of why they were there. The day before Somebody’s client took a bite (I repeat, a BITE) out of a carer’s thigh. Ouch, sweet Jesus Nelly. I expressed my terror. Then my barrage of questions/statements.
“What was the carer doing?
Presumable the client didn’t like it?
Was the carer not reading the client correctly?
Was the client not being listened to or heard?
The carer must need more training?
What was the carers thigh doing anywhere near the clients mouth?
The staff need more training or better staff?”
Somebody looked at me surprised. I’m sure Somebody wished I had been there to quick fire my questions. I hope your advice, the result would only have been to move that staff member to ‘easier’ clients and to dumb them down with stronger meds. I refer to that as ‘bombing’ them out. Which is also why I don’t reach for pills anytime something hurts or I’m given a script.
Lastly, this shit is why I blog! If you got this far, please hit Like and share.
Family
Family is a beautiful and evil thing when you have a disability and life in general, I often feel like my contribution is undervalued or thing’s I could do to contribute to get together’s, it’s assumed I would break things rather than help.
At most Christmas gatherings, I offer to help because I want to be apart of things and not feel like a freeloader, but it becomes easier to stay out of the way and come in later to pack and unpack the dishwasher. I may offer to hand wash (carefully) some things that don’t go into the dishwasher and I’m told very quickly “NO” like I might smash the Fine Bone China cups and saucers.
No, I will not, I hope to inherit a share of those one day. Three daughters, is cups, saucers and cake plates. So, no would definitely not smash them.
Fun Fact: You can put Wedgewood in your dishwasher just without the detergent and likely on a cooler wash.
You’re welcome.
Cool Teacher
So, my cool teacher. We all have a cool teacher, right. My favourite teacher was the Art teacher. Of course, he was.
As an Art teacher, he would listen to you, discuss techniques and he would allow you to do things the hard way so you would learn and then he would suggest a far easier way for next time.
If students thought to do art in their final year, to get an easy class, he didn’t pander to their demanding insistence to be helped. He was very firm, he couldn’t or wouldn’t help those that didn’t help themselves. When I had insisted to be moved to his homeroom for Year 12 as I had been put into another homeroom. My form teacher (Let’s just call him Art to make life easy) Art had, had some elective surgery over the Christmas break (don’t know, not relevant) and something had gone wrong. I think they had accidently given him nine times the correct dose of ‘something’ and he had ended up being taken to Melbourne in an ambulance, in Intensive Care. He survived. Thank God.
When he returned to his first homeroom, back rather nonchalantly he stood at the front of the homeroom behind his desk, facing the class and announced he had been absent for the year, until then with a “Sorry about that”, which was perfect. It was really blaze. Although I imagine now knowing what I do about the brain and surgical fuck ups, that it had been a road to recovery.
Lastly, he was so cool, I once overheard a conversation between two older guys (Year 12) talking about driving or flying somewhere at high speed. Art ducked his head into the conversation, stating “Try being in an ambulance on the freeway, 200 miles an hour.” With the sirens blaring.
Totally chill, Right!
Bender!
I saw a British comedian on a TV show walk on stage and announce he was a bender. WTF?
He was referring to being gay. My gaydar is not always working but it was pretty obvious with him.
I AM STRAIGHT, or homosexually challenged as I like to say. But if I use the word bender, I suggest I’ve survived with my disability by bending the rules.
I think within reason, all my life I’ve done it. Case in point, When I was going from Year 11 to Year 12 in High School, I wanted to have more free periods (space in my timetable so I could study more or whatever). My timetable had 6 classes in a day from 9am-4pm. Mostly, kids had 2 free periods a week and I was already planning to be a poor art student at college.
So, when I sat down with my co-ordinator to discuss my choices in classes/subjects for the following year. I wasn’t doing sciences or literature-type subject or legal or accounting. I mean, C’mon! Snore/ZZZZ, I sat with said year level co-ordinator and told him I didn’t much care I was one subject short. I wanted free periods. He told me I couldn’t.
Can you imagine telling 18-year-old Helen she couldn’t have what she wanted? Oh no, he didn’t! I knew a year 12 student who had done exactly that so I said “But Fran O’Neil did!!’ Fran can be found here Fran O’Neill He did not look pleased and that is how I had 9 free periods a week.
I was at school first in the morning. I spent my lunches and all my free periods in the art or graphics room. I bagged the black tape deck at the library so often when the library card was finished, I asked to keep it as a memento. I booked that tape deck out so much my name was consistently on it.
Year 11 and 12 was also the days of my favourite teacher ever. I actually was given a different homeroom teacher in year 12 and I dared to be moved by my art teacher’s homeroom since I was doing more art subjects than anything else.
My teacher had already missed the first half of the year anyway but that wasn’t the point. I was insistent he would return. (He had had a medical situation and had been absent without any idea when he would return.) His first homeroom back, he stood at the front and apologized for being absent. Then got on with it.
My first parent/teacher night that year my mum and I would sit with said teacher and I was informed that at the first meeting in the teachers’ lounge the co-ordinator announced ‘Fuck that, Helen Caligiuri! You all need to watch out for her!” Isn’t that lovely?
This is why the homeroom teacher was so cool. I will tell you how cool he was in just a moment.
But, first, that is an example of how I bend the rules. Bend not break and if you happen to stop them because you bent them a little too far. Ask permission first so you can say such and such said I could,
I know, it’s childish but so is high school.
Thank you Ferris
Hot off the Press
Hellonwheels is back baby!
Is what I intended as the first post back after an extended break. But instead, it was right back into posting. Only once weekly but very happy to see my words be shared. So, others can read my words. Life is still busy.
I am always very grateful to my lovely administrator in Sydney that is responsible for hellonwheels being online. It was actually Noelle’s life that was extra chaotic last year in 2020 and while it’s not for me to say, I was rather insistent for her to take the break she needed. While her life is always busy, I have been privileged she has been able to return to once-weekly postings.
Interestingly, while no new posts have gone live, I’ve still gathered followers. If you have not received a Like to your blog (my way of saying hello) I will get to it. Thank you.
During lockdown from Covid in Melbourne (we had 2) my blog reading activities reduced somewhat. I’m convinced my Like button is broken. I’m just lacking the skills to solve this issue. My interested have been reduced to what I refer to as blog Porn.
Don’t judge me, you all know what I’m talking about! Puppies, travel blogs and cars, luxury cars, not realistic type cars. The totally never going to have type………cars.
Did I mention my wheels looks like this?
Warm weather has been great for adventures on hellonwheels. The colder/wetter seasons really put a dampener on my adventures. As does the end of day lights savings. For adventures after 5pm! Last week I arrived home at 8.30pm from a local adventure. It was on dusk & it really alters my planned route home. Crossing side streets becomes a heart in throat ride home I know nobody has enough insurance for. I often cross a side street scootering home on the High Street and I am half way across, see a blur in my blind spot on my left and then a car right in front of me! FFS!!!!! They have obviously seen an open in oncoming traffic and taken it. I don’t think anyone has enough insurance to hit someone with a disability. Just saying………..
In brief, Covid made 2020 only a bit different for me. One of the reasons we could leave our homes during their lockdowns was medical appointments. Does anybody know how many of those I have? Too friggin many. So, I was still out four days a week, standard. I did miss out on a few catch-ups with friends for dinner and my once yearly comedy event out. Was thankfully, postponed. It was the one thing I didn’t bother following up. Since nobody knew what was going to happen, it was something I couldn’t stress over.
Melbourne is in its Melbourne international comedy festival season and now I’ve got two shows to see this year. They have ended up being two nights in a row. So, will be knackered. Stay tuned for a “Hot Off the Press” in mid-April when I report.
Recently, several of my carers have mentioned the feeling that Easter was “ages away!” A sentiment I’ve also been feeling and last week, we all realised it was this weekend, now past. So, happy Easter people! I spent mine doing the three things I like best. Eating, Sleeping and watching TV/films. Not always in that order. Yet to eat any chocolate.
I also pet sat some bunnies over Easter in another apartment in my complex. Meet Frank & Beans.
2021 seems to be going rather quickly, yet with the standard unfulfilling feeling that no matter what I do or say, people are not doing what they are meant to be doing, and I’m not achieving as much as I’d like. So is the way of advocacy & disability.
But onward we march!
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.
Forever Frustrated
I am forever frustrated and outright pissed off by the lack of quality service in both Government and Disability sectors.
Today, I actually had a reason to be grateful, I didn’t rely on TAC funding. Ironically, I generally make a strict decision not to name and shame, however I’m going to today for a one-off.
A provider of a service, fuck OK, Chiropractor had a call about one of their patients. Let’s keep some mystery. The chiro was away on holidays. They would be busy with patients anyway, so Helen (my name for a change) from the TAC left a message. They called again and left a second message from Helen from TAC, stating they had rung twice.
BOO-FUCKING-HOO
And they didn’t leave a fucking number. Poor chiro, on her day off had to call the 1300 number and was on hold for an hour, while they had to work out ‘Who this Helen was!’ it’s on my top five most hated things.
How people, companies get away with getting paid to not do their job.
And let’s not forget the difference between TAC funding is they pay for everything. Computers, phones, chiropractors and my NDIS won’t pay for chiro or computer devices.
A Very Special Edition
Today is a very special edition of HellOnWheels bought to you by the letters C & not for the obvious reason.
Today is the first day Melbourne is coming out of the harshest lock-down reported in the world! Today is the return of cafes being open and being able to dine in! During lockdown my Girl Wednesday/Friday and I have been doing Car Cafe sitting out the front of ….wait for it. Introducing https://www.cavallini.com.au/
Finally, I’m telling you all where I go to eat, get my caffeine fix, write and where even during lock-down I would walk in and be greeted with a “Hi Helen. How are you?”
It’s even more special today, because anyone want to see Bruce Willis with actual HAIR? Your welcome!
Now, todays special offering. I previously just called this the salted caramel, chocolate, chocolate thingy thing! But it’s actually called a Maltalbarno. This week I would arrange several coffee dates here with friends so I can share a slice of this over coffee to help me celebrate and to share the calories. Calories share is calories halved right?
I wish I could say I’ve been laying low during CoVid lockdown however; you can leave the house for several reasons. Number 1, Medical appointments and I have had plenty, including a Brain-Scrape (yes, Covid test) I passed. So, I could go have my first Colonoscopy.
Yeah, cos I’m “that” age and because my father had bowel cancer before 60. He survived! Not complaining. But it means 15 years before the age he was diagnosed I needed to start getting tested. Super, I was a bit overdue, but I’m good. I passed too. And I’m good for another 5 years! Just enough time to forget how disgusting the nasty prep drink is. No really. It’s hideous, I will do a post to share my great jokes I gave them before my procedure and the challenge I set myself after the procedure.
I hope you are all staying safe & getting tested? For CoVid and well I guess bowel cancer too.
I will also add I’ve seen my father 3 times this year, I didn’t even see him at Christmas. It’s normally the only time I do get to see him. But I only got to see him because he had a heart attack. For Christ sake! He drove himself to hospital! (in the country) because, I’m told it’s a “Wog-Thing” Don’t worry, the nurse gave him a talking to and open-heart surgery and 3 months later he is finally “getting there” so despite the “Fit hitting the Shan” on 2020, we could be coming out of it.
Optimism, right? I’m trying it out. Leave me be!
To be continued………….
Cheers,
H
I’m not back, just yet.
After you read this post today you will want to return to this post that will leave yourself with a nice warm glow.
This post is 100% Noelle, who is the only reason you read my words. Introducing Noelle, she is the real Meme Queen behind Hellonwheels.
Any comments received I credit her. She is my administrator as well as my Transcriber, editor, my put up with my lovely in-house tech-support occasionally, changing passwords without telling her and all that. Last week I became aware she had another great talent she’s kept hidden and I asked her permission to share, enjoy!
A Word of Wisdom
To my Son
I’ve travelled paths you’ve yet to walk,
learned lessons old and new.
And now this wisdom of my life,
I’m blessed to share with you.
Learn to trust your feelings,
your beliefs you should uphold.
Don’t walk away from what is right, be courageous and bold.
Keep faith beside you always,
it will guide you every day.
Know that strength comes from above,
and you will find your way.
Let yourself be humble,
and remember to be kind.
When you have respect for others,
true friendship you will find.
Have dignity and honour,
and be proud of all you do.
Confidence will take you toward
a future that waits for you.
The world is filled with choices. —
there are challenges to .
But you can make a difference,
as you find your rightful place.
And so, I can not wait to see,
the wonders you will do.
Because you are my Son,
and I’m so very proud of you.
Hell onWheels/Life One Handed 