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.

Sounds like a lot, but trust me, I glossed over bits or streamline.

The point is!!!

 

Today’s Lunch – 18th March 2020

Published March 18, 2020 by helentastic67

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

Eggs

Published March 16, 2020 by helentastic67

Eggs

We think money makes the world go around, but I think EGGS can build a community.

A carer started buying me eggs, I would get a tray of thirty farm fresh eggs for $14.00, then I would give a dozen of them to my masseuse as I don’t otherwise pay her.

I have other ways to pay her which I think she appreciates. The carer who would bring me the eggs had a collection of egg cartons. I started decorating them with a thick black texta in the hope that other people would join in. Add to the drawings, answer the question and posted inside by announcing what they intended to make with the eggs.

Mine stated “Destined to be Carrot Cake or Omelette or Bread and Butter Pudding” (Which needs eight eggs)

After a time, I found my own supplier which was two less things for this carer to do for me in her own time. I do like to be self-sufficient, but my contact has trays of twenty eggs for the same amount ($14). And again, free range and ‘Picked’ that day at 4am.

You should realize eggs don’t grow on trees, but are laid. The eggs are rather big, 800g and ‘twins’ or double yolkers are plentiful.

The issue is, I need to order two trays for my egg guy to deliver for free.

So, I asked around my neighbours and my ‘people’. My first order was two trays, one for me, one for a neighbour. My second order was five trays.

And this is how I’ve been trying to create a community.

Today’s Lunch – 13th March 2020

Published March 12, 2020 by helentastic67

Today’s Lunch

Good Mental Health Day

Apologies my foodie post was delayed this week. My apologies. I had a really shitty migraine. So, have not been out much this week. Happily, had a three-day weekend! Always makes me happy! Had the brain injury self-advocacy group on Tuesday, so started the day with a migraine ended the day without dinner, some hard drugs (Tremadol) and finally nailed part of my New Year’s resolution, got to bed before 1am!

At the brain injury group there were new members present. Another newish member described me as ‘Caustic’ I asked what she meant? Not offended I offered ‘Bitchy’, was acceptable, or ‘blunt’ I just like to be effective. I provided an example. She had introduced me as ‘really friendly and warm but caustic’ and she is probably right. I also bring the funny. Now, let me touch on the Corona Virus. The media is not helping and people are stockpiling flour, long life milk, medications and most importantly Toilet paper (I will now refer to as T.P.)

People need to calm down! Because I need my T.P. because it turns out to be a terrible time to be doing a liver cleanse. Taking my St Mary’s Thistle for my fatty liver, I can’t even give up my closet drinking as I don’t. Add to this the HRT patches I started on Saturday to help calm some of my peri menopausal symptoms gave me an early shark week and a shittier migraine than normal. Couldn’t even get through my chiropractic adjustment without being sick. The rest of my normal Wednesday stuff was cancelled. Home to bed!

Started to improve Thursday and still with all my usual appointments and crazy, hellonwheels tune-up, visit from the vampire (blood test!) and a trip to my podiatrist. And now I’m smashing out this post Thursday evening, the night before it goes live. While I’ve skipped a few meals this week due to feeling seedy from my migraine. I’ve a musical treat. I’ve just gotta get through Friday and Friday night I’m going to see a band. I actually loved this band in the 80’s when I was a teenager and the horrible week, I let Jamima cross the rainbow bridge back in 2016, in my neighbourhood. This time I’m going to see him at the Forum in the city. Here is a clip you can check out…….

 

This is way too short! Here’s another sample.

And lastly, two stories of the extremes of the attitudes and fall out of the corona virus. A support worker told me both of these from one of her other clients. This about a month ago.
1) While at the butchers getting her clients cat its meat. Yes, fussy cats down here. An older gentleman complained he couldn’t get his muscles because of this Chinese Thing. This was about a month ago. But did you gasp? So wrong! So, so wrong!
2) This other client went to her doctor and while in the waiting room chatted to a Chinese woman sitting next to her about art. She loves art apparently. When her name was called the Chinese lady thanked her. It had been the first conversation anyone had had with her for three weeks. I guess, I’m suggesting we need to do better? Wash your hands. If you have any Symptoms stay home and don’t buy all the T.P. Helen’s doing a liver cleanse! Your welcome!

Cheers,
H

Self Advocacy

Published March 11, 2020 by helentastic67

Self Advocacy

So, help me God! There are some days Advocacy is needed for everything and the simplest things. Tuesday, I met with my Service Co-ordinator (in old terms my Case Manager) and I mentions to her again, I’m still yet to be sent hard copies of any of my invoices. I seem to have this conversation EVERY SINGLE TIME I SEE MY SERVICE CO-ORDINATOR.

Nothing changes, to be clear I’m not doing my part wrong. I’m not using poor communication/negotiation skills. It’s just people not wanting to do their jobs or not wanting to be monitored or held accountable.

So, I get an email with my invoices every month, which I can’t print, so I’ve asked for hard copies. I also now have to argue and debate it’s NOT EASIER on the computer screen. Because with my eyesight I can’t chop and change between two spreadsheets on my laptop to make sure my records of who turned up on what date for how long is the same as what I’ve been billed for. It’s no longer my money, but I still wanting to know the $70,000 is about making my life better, as it’s designed and not lining the pockets of companies and people who want to work smarter not harder.

It’s my opinion, the cost of printing my invoices and posting them out to me should at their expense, because they can absorb the costs.

They are not doing it for everyone, but I can impress upon people (other clients) they can insist on it. So, rehashing this every few months seems I mention it to my Service Co-ordinator, she then calls my Service Providers, who call me to argue and debate out of providing a service and be held accountable.

I’m pushing back.

And then, after a short tram ride home, after my one appointment today, I work my way to the door of the tram an while I stay on my walking stick is between my teeth and holding on the hand rail on the right hand side of the door I go to step down.

My tram line does not as yet have the accessible tram stops, so it’s a big step up or down to the road. I’m encountered by a hand reaching up, just near mine and a leg stepping up. I don’t know where she thought she was going since I couldn’t get down without the hand rail. She didn’t even look up to see me. She said “Sorry” but she obviously didn’t mean it, because you would think (crazy me and my common sense, right) that she would rethink what she was doing and stop and wait. No! She continued to attempt to step up. She was a teenager in her school uniform and twice as wide as me. (Not fat shaming, but suggesting she thought to use her size to intimidate me)

Do I sound like someone to dare try to intimidate? You bet. I put her in her place. Around the walking stick strap between my teeth I said to her.

“Are you seriously going to still try to get on this tram while I’m trying to get down?” and she waited for the split second it took me to get down. I just don’t understand how I need to tell someone they should wait for people to get off a tram, train, bus (This argument works for any form of public transport or transport even). Wait until people get off before you attempt to get on. Why is it so hard?

If only, then is their more room for you to get on. No?

FFS

Grumpy Old Lady

Published March 9, 2020 by helentastic67

Grumpy Old Lady

Ok, for once I’m not writing about me. Ok, the grumpy old lady in question is not me. I was there and there was a grumpy old lady and for once it wasn’t me.

You know those accessible toilets? The ones with the heavy door (we work at that first) because it’s operated with a button. But I never see the button until I’ve put my whole-body weight against the door and sworn a bit at how hard it is to open and because it’s operated by a button, there is a light to indicate if it’s engaged.

I mean, no one pays attention if the normal lock states if it’s engaged anyway. People still put the stall door and sound surprised when it’s actually locked.

I know, right. I don’t know about anyone else, but I always call out “I won’t be a minute” and I take as long as it takes.

I’m not the one being rude. But I digress, frankly I get access to the accessible loo, I take my bag off and hang it on the strap on the wall and I hang my walking stick on the other. Don’t worry, this will not be a blow by blow account. But, while I’m “busy” the door opens wide and a woman, older seemingly “well to do” looking down her nose at me.

I can only describe this woman or her personality in these words. The look on her face told me she felt her shit didn’t stink. It is a pure Aussie Bogan term at I can’t sugar coat it. There it is.

And I’m 100% sure she looked at my face and thought I was ‘young’ and didn’t belong there. I’m also sure she considered I was on her throne and I should feel shamed enough to just get off. I did not move.

She just seemed happy to stand there in an authorative pose to argue and debate it with me. The damage was already done. She had seen me on the toilet (not that there was anything to see) but no one else needed to see me.

I was ready to suggest if the conversation wasn’t over, she could come in or go out, but could she please close the door. When she decided to leave.

I finished my business and left without another incident. The following meeting with my local DAC (Disability Advocacy Committee) in my local council, I mentioned my fun ‘little’ story of total humiliation.

I learned the lock automatically disables after ten minutes, so homeless people don’t go in there and spend the night and so junkies don’t go in and overdose.

Ok, I get it. But ten minutes, I’m one handed. Have you ever tried working these toilet rolls one handed? That is frustrating too. That is the making of a serial killer.

 

Online Dating

Published March 6, 2020 by helentastic67

Online Dating…. Arghh

I know I covered the Barren Spinster thing, but I didn’t as yet cover the dating with a disability thing. Until now.

After a few years of being single, I tried consciously to do the online dating thing.

Sweet Jesus! The Millennial’s! Can we blame them for that?

I mean, I did the clubs thing back in the 90’s, I was out there, I had exposure and nothing. Most of my 20’s, single.

Can you think of the top three questions you get asked doing the online dating? Please imagine my profile mentioned I did not drink, imagine it was something akin to personality. I wasn’t looking or interested in a quick sleaze. I wanted that eventually, but not from someone old enough to by my dad.

Right!

Question 1, What do you do? I tell them I’m retired. (to avoid catfishing, I quickly follow with retired, but poor) and I do advocacy for people with disabilities. Let me tell you what they want? 1. A quick shag, almost on order like Uber Eats. Cringe!

Older guys want Jennifer Aniston, wearing a tiny bikini while lying on the beach drinking a beer.

  • Are these men A-Grade specimens of man? Deserving of a Jennifer Aniston? Don’t be ridiculous.

Today’s Lunch – 4th March 2020

Published March 4, 2020 by helentastic67

Today’s Lunch

Good Mental Health Day

R.I.P. last Friday, I lost one of my favourite carers. They are all my favourites they just all bring something different to the party. This carer I will likely write about in a future post. I’m going to refer to her as FP, I only had 5 minutes notice before she arrived for her last shift. I would have FP up to 8-11.5 hours for 1 week every month and often mistaken as my daughter. She has not passed on but merely gone to study for the next stage in her life. I had, had her as my carer for three years! I mean, I had just gotten her trained. She could accurately read my mind, finished my sentences and I got to feed her.

I’m a feeder! I love to send my carers off with something to eat on their way to their next shift. I used to ask FP if her mother questioned me feeding her and the response was this. “If I go home and eat my dinner she doesn’t need to know” I believe this is exactly how she put it. I think she might waste away and her mum might wonder why, I might need to prepare her a care package.

Now, Autumn has arrived in Melbourne and I’m never happier than when wearing full black. It’s a rather strong Melbourne trait and it doesn’t hurt, it’s very slimming. I was down in Cliffy Hill yesterday to see my GP and he loves to encourage me to get on the scales. I fight him every time! It’s been good to catch up on some blog writing, as I will do again today over lunch.

Today’s lunch is the brain grain salad, because sometimes I need all the help I can get and medicine!

 

 

 

 

 

 

 

 

 

After another long day I’ll have to go home and give Mika to sit her down and give her the talk. You know, the one about how one of her favourite people is now gone from our lives.

Adapt

Published March 2, 2020 by helentastic67

Adapt

Being one handed, the most important thing I can recommend in order to survive is, learn to adapt.

It’s the day’s I go to the city and I do some hunter/gathering, that I push myself a little more and while it exhausts me, I notice how my physical body adapts.

My standard trips to the city meant a lot more steps and carrying. If I can’t carry it, I can’t buy it. So, I’ve gotten creative.

Yesterday, I bought two novels and a box of envelopes. Not heavy, just cumbersome and sharp corners. These day’s I travel with one of those fold up grandma bags. (Not a slur) but you can carry it around until you need it. It weighs nothing, takes up no space, but once it’s got two novels and inside it, I usually ask someone to help me put the handles on my left arm above where my cuff and collar sits, just on my elbow. The bag swings along my side and doesn’t hit my left thigh.

My next stop I collected comics, they are flat and not very heavy, so they go in my bag that sits on my right glutinous maximus. Slap, slap, slap.

Then I stopped at a chemist and picked up a few things. Definitely the weightiest purchases of the day. I might even have behind packaging to save or bulk. At this point I’ve reached my maximum density.

I’m starting to feel weighed down and I’m walking a little sideways and bumping into people. Or it could just be people on their devices not paying the least bit of attention to where they are.

After a quick pee break where the bag on my left arm stays there to save needing to put it back on. I walk not far to the tram or Bourke Street Mall and I get on the tram.


Waddling like a pregnant lady now, I try to get two seats near a door facing forward. I might start with one seat and the bag sits on my lap, the straps digging into my shoulders. My right leg in the isle making people brush against me. The bag on my left arm is beside me digging into whoever didn’t think to offer me both seats.


• I’ll just point out here I’m not bigger than Texas. I’m just a wide load by this stage.

Thirty-Five minutes later, I’m at my tram stop (Maybe I was able to spread out for the last 15-20 minutes) I stand up on the tram, readjust my bags, the strap on my left shoulder. I carry my walking stick with the wrist strap between my teeth, so it doesn’t bang all over every piece of metal known to man.


Have I mentioned, I can’t do stalker or stealth? I manoeuvre my way to a door, favouring my right side as that’s my better peripheral vision. All the better not to step on or bump into people and while holding on to one handle or another I manage to get to the right-hand door handle. Walking stick still in mouth.


Tram stops, door opens and I swing my left leg out and bending my right knee, step down. I don’t let go until both feet are on the ground. Hoping just hoping people have followed the road rules and cars have actually stopped at the back of the tram. Yeah! That does not always happen.

I then use my walking stick to walk to the curb. Right foot up, lift and swing left leg attempting left toes to clear the curb.


Fast forward to me getting inside my apartment. There have been days I’ve taken off the bags and weighed them and I’m surprised I’ve carried the extra five kilos home from the city.


But the biggest surprise to me is after I’ve unpacked everything and take my extra layers off (jacket, scarf, etc) I’m moving around my home feeling like I’m on a permanent tilt.


So, by gradually adding weight, my body compensates to do what I insist on it and when all of that is gone, my body still acts like it’s needing to adapt to carry the extra weight and that is today’s lesson.


You don’t know what you can do until you try. Do a little more on top of that and a migraine.

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