Please Don’t Call

Published June 7, 2021 by helentastic67

PLEASE DON’T CALL

I really want to thank you for calling me today to tell me all the things I should be doing. You haven’t responded to any of my friendly messages for months now.

I had some good news to share, but you didn’t ask, nor could I get a word in edgewise. I’ve just had a 4-day weekend on the 4^th lockdown in Melbourne, some appointments cancelled I’d been trying to get done since they didn’t happen in 2020.

Fuck you COVID! No, I really mean it this time!

It is imagined that people with disabilities have not been financially impacted, since we don’t work. We haven’t lost work and why should we matter.

Well, I shall tell you how. Allow me.

These days I do take more ‘healthy pills’ than medications so I can live to the at least 65. I can afford to live till then.

herbal pills in wooden spoon with ginger root, Kaffir lime fruit and flower on dark brown wood background with copy space. Above view.

Shut up! I will explain that expiry date another day.

COVID has meant everyone and their cat and dog has been out buying ‘healthy pills’ to avoid getting or dying from COVID. It’s a fair call. I can’t blame you all. However, many of my healthy pills I buy in bulk so I can get bulk discounts and pay less over time and because my suppliers have had limited stock, they have not allowed me to do this. I’m not talking about truckloads, just 2 x 200 tablets of magnesium. Just an example.

But I don’t need someone who is not on the ‘coal face’ of living on the edge financially and choosing what I’m meant to do without to ‘help’ me decide I can give up my weekly chiropractor visits.

You all realize I have lost many of my pain management appointments due to lockdown, right. And you want me to deal with a rib out as well. The rib still hurts despite being put back in last Friday. It’s Thursday night as I write this.

So, it’s really shitty when people who are meant to love me are awfully opinionated about what I can do when they are not me.

You know that moment when if there was a statistic that said if there was one person in every family of four to have a disability. The only person in your family who could deal with said disability well, it’s you. Yeah, I knew this some years ago.

Now I needed to ask for a loan, quite happy to pay it back. But without even knowing what it was for, you decide to give me a lecture about managing dollars better. Stop helping!

You are upset, because I didn’t ask how you are. It was hard to get a word in edgewise, and I was already having your opinions and the opinions of other people who are not me to get a word in edgewise.

So, now my days is not done, I don’t have the energy to ‘deal’ with anything else today.

I’m feeling really shitty. My head hurts, my left eye is pounding (the indication of my migraine these days). So, I’m going to bed for a cry and a kip.

Now I need to feel like eating sometimes so I can sleep tonight and get up and do all the things again tomorrow.

Meanwhile, the rent gets paid. The lights go on. I’m not starving and I can put one foot in front of another knowing I don’t ask for help often but when I do, I really need it.

Then, maybe I’ll be able to smile a little. Or I can try and if that’s how you are going to be, please don’t call.

Joke from Hellonwheels

Published May 25, 2021 by helentastic67

Joke from Hellonwheels

As you might all be aware of, I’m always busy. Did 2020 put a dint in anything? No.

One of the reasons you could get out in Melbourne during what was known as the toughest lockdown anywhere, to stop the spread of Covid, was medical appointments.

I was out at one yesterday, when I came up with this witty joke.

You remember the days when the military used ear piercing metal music 24/7 to keep their prisoners sleep deprived? Send water boarding? (I know this is wrong, but hang in there?)
So, the new torture device is………..
“Tell us the codes to end the world!”

Do you remember that song?

Your welcome!

Men/Women

Published May 17, 2021 by helentastic67

Men/Women

Sometimes I see the perfect example in name about how men and women differ. This is not to say one is better than the other or worse, however rarely the perfect example presents itself for me to share, so I shall.

I was on a tram heading into the city, in the early evening. It was still Spring, but towards the end of the season. In Melbourne, that translates as flowers, wind, winter, rain, hot, Spring, Spring, Spring, rain. Forty degrees in the shade. That about nails it.

Several of my carers have hay fever for months. A young guy was sniffling a lot on the tram and it was rather unpleasant, not that I gave any indication of disgust.

He got up to check the tram route map and when he sat again, he apologised for sniffling and explained it was hay fever. He had gotten up that morning and had run out of tablets.

Context done.

A woman a week earlier would have noticed, then to fit a visit in somewhere when she was close to a chemist during the week. By day five, let’s imagine Friday, she would have started to consider there had to be a chemist somewhere and she would have gone out of her way to be prepared. Guys – he just plain ran out.

I had not been concerned he was contagious, but I reached out a hand offering him 3 slightly crumpled tissues. I could tell he wanted to take them, but he looked concerned they were not clean. I reassured him I had only just put them in my bag.

I guess I’m a natural born Nona in the mix.

Hay Fever

Published May 10, 2021 by helentastic67

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

Published May 3, 2021 by helentastic67

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

Published April 26, 2021 by helentastic67

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

Published April 19, 2021 by helentastic67

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

Published April 12, 2021 by helentastic67

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 – 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!

Cheers,
H

Chinese Whispers

Published March 20, 2020 by helentastic67

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.