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.
Hot off the Press!
Sometimes, blogging about the here and now and the most important reason to blog gets lost in all the detail. So, being careful to consider someone else’s privacy.
Imagine being 29 and all you want to do is survive, to thrive, with a pre-diagnosed medical condition, you have a stroke!
Again, not my story, but a friend.
After over a month in hospital, being tested for everything including CoVid19 and with no answers. Sometimes, this is the way. No answers.
Being kept company by parents, day and night so nurses give the best care. The same care they would give to anybody without disabilities or pre-diagnosed medical conditions. No matter what they are. A short stint in in-patient rehab, where physio appointments went cancelled because of the low expectation of recovery. Parents needing to still be there to advocate for their child to make sure they get what they need.
What to do now?
Well, the hospital and the patient, to be fair want the patient discharged ASAP. The patient obviously very keen to be home where his parents can arrange the best for their child. Well, adult child and the parents could get a reasonable night’s sleep, to continue to love and care for their child as only parents can.
So, in a perfect world, a caring parent/advocate/carer applies to the NDIA for a change in circumstances, so the patient can go home. Extra carer hours can be utilised to provide adequate care in the home. Plus, some much needed respite for the parents. And sufficient physio and Occupational Therapy to return to at least the bare minimum or return to the same level of independence my friend had in the comfort of their wheelchair, not so very long ago. Is it too much to ask? Is it even possible? I guess we don’t know until my friend is in the best environment for this to happen. Which is clearly at home.
They can’t go home until these things can happen.
I don’t know about anybody else, but I don’t have the funds to pay for these kinds of things, so the NDIA, a government organisation should prioritise these things, no? Let’s see how long it takes for my friend to be able to go home.
And lastly, I’ll leave you with this great quote that I only know about because a great Aussie disability advocate used it.
Disability is seen this way………
“The soft prejudice of low expectation!”
Please share through your networks to show your support. While these stories go untold people get away with providing sub-standard care. Let no single person with a disability be left behind!
Cheers,
H
Chinese Whispers
I’ve had carers or support workers now for about thirteen years. Long enough to know the more people between me and my carers means anything they need to know, do, which entrance to use, etc. The more things can potentially go sideways.
When things go sideways that early (most of my carers in the morning around 9.30am) As I’ve been blogging how long now? I knew I mentioned in my early blogging days, I would complain about carers arriving early. This shit is still happening.
This is when I would point to my face and ask “Do I look like a morning person?”
Twenty-four hours a day is morning for me. I’m not a morning person, I’m not a go out at night person, I’m barely a person. I don’t mean I’m not human. I just am constantly grumpy and don’t cope.
My main agency lately, that provides my morning and rare afternoon carer doesn’t have the personal to cover all my shifts. They have already merged with another large agency I’ve dealt with years ago, but they still don’t have support workers in my area. So, two of my shifts each week, they outsource to another agency. One shift to another agency, the other shifts to another agency. Can you feel my frustration already?
Ok I will blah
I have passed on enough details.
No perfume, park on this side of the street, in this supermarket carpark. Enter the apartment complex here, not here. Come up in the lift to the second floor, etc, etc.
Sounds like a lot, but trust me, I glossed over bits or streamline.
The point is!!!
Today’s Lunch
Good Mental Health Day
Last Friday night, had a little tap-ass (I.T. Crowd reference) before going to see Midge Ure at the Forum. The night before the new rules of no gatherings in public over 500 people. Therefore, no comedy festival.
Anyway, had medicine and Spanish Chorizo for dinner before the band. It made my nose run which was really handy. I sat down and had to inform the woman next to me I was not contagious but didn’t cope with spicy food. I’m a shame on my Nona and my Italian heritage.
Well, this has been a very strange week already. This CoVid19 is continuing to make people think it’s the end of the world! Monday, I visited my friend. Bette in Bacchus Ass! (Bacchus Marsh!) which while further away from me is better than where she used to live. I called it Scumbury. I have written about her but it’s in the next batch, you must be patient. In short, we met in rehab five years ago. I was very cheeky and she has been unable to shake me. I took treats from my favourite cafe and so she didn’t come plain about how much I took I sent a photo of what I didn’t get.
Meet Bette!
Her mind is very sharp. But her body is letting her down. Sadly, I think I got to visit just before they instated shut-down laws. I also heard from three very unexpected people on Monday checking in on me. None of whom were related to me. Which was nice.
Sadly, no contact from family. When I rang my family, I got a lecture telling me if I didn’t take things more seriously and I get sick I would not be getting rescued and I was also told it was assumed I was ok, because I had not reached out.
Overall, I keep more to myself these days out of self-preservation. I’d prefer not to suffer a lecture if I not feeling great already.
Meanwhile, had a scooter adventure yesterday to my local supermarket. This was my haul.
Can you tell me what’s missing? Yes, the T.P!
Meanwhile, hellonwheels had a service last week. This is my effort at a classic car/motorbike/scooter shot, in the bottom of our apartment car park. I go down to the basement every time I’m out on hellonwheels. I like to open up the motor. (That’s a joke! It’s electric.) Before I put her away to recharge. Because it’s fun.
I hope you will excuse the lack of today’s lunch today, I thought I might overwhelm you.
Cheers,
H
Hell onWheels/Life One Handed 