trams

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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

Today’s Lunch – 19th June 2019

Published June 19, 2019 by helentastic67

Today’s Lunch

Good Mental Health Day

Happily back at my familiar lunch spot this week. The roadworks on tram route is over for now, I rang the PTV to learn they have started the accessible tram stops. Thank Fuck! As last week I almost managed to get myself killed. Or at least dragged along beside a bus! You can stay tuned for the long version of that one, sorry.

I’ve just sent my next 40 posts to Noelle. Still so much to catch up on.

Another hectic week so far. Throw in a massage, a migraine by 2, a pre-dinner kip, midnight dinner. A quick half day in the city for admin and chores. This little duck I gave Caroline and how she has used it?

I thought it would remind her of a great You tube clip of a comedian talking about…….maybe just watch.

Also went out for din dins with a friend previously mentioned as my Gay Silver Fox and his husband! Cos that isn’t rubbing it in. Finally got to Giro D’Italia where I had this amazing Gnocchi with beef ragout and Tiramisu. They would not help me eat and again reasons why Hellonwheels cannot do Insta, I forgot to get a photo!

And finally, today’s lunch, Pancetta quiche with side salad and my medicine.

Today’s Lunch – 13th February 2019

Published February 13, 2019 by helentastic67

Todays Lunch

Today’s Lunch

Good Mental Health Day

Well, today’s post is bought to you by the letters J, M and J and the word “OUCH!” I woke up early Tuesday morning, that being only yesterday and my neck was killing me! My plans completely changed.1) I needed help to get out of my pyjamas! My PJ’s I tell you! This is not a good start. 2) Call chiropractor!

Ouch

After the chiropractor I went home to ice my neck. Had a little kip where it hurt just lying down. My lovely Girl-Friday (she has been my Girl-Tuesday and Girl-Wednesday this week also) delivered me to my monthly GP appointment while I had to tram it home. I had to let 2 trams go past me so I could wait for an accessible flat-bed tram to arrive. When one finally arrived, I passed up a seat offered to me because it was less challenging to stand. The stop near my home is not an accessible tram stop. I fully imagined to step down and would let out a yelp and maybe even a little pee would come out! Yeah, that level of ouch! Thankfully none of those things happened but it still hurt!

Neck Pain

So today, another chiropractic appointment and on to our normal programming.

Chiropractic

Today’s lunch, cannot get enough pizza right now. So, pizza and a side salad with medicine with a red velvet cupcake for Valentines.

PizzaLatte

 

 

 

 

 

 

 

 

 

Red Velvet 2

I’m staying in tomorrow. Valentine’s day is no fun for single barren spinsters! I am fully aware of the irony of this comment.

Single Barron Spinster

Cheers,

H

 

Today’s Lunch – 28th November 2018

Published November 28, 2018 by helentastic67

Todays Lunch

Today’s Lunch

Good Mental Health Day

Welcome to another busy week so far. Hoping Wednesday’s punchy/stabby day is a bit of calm to my mid-week.

Calm mid week

However, first I must mention a lovely woman I called my friend that I heard passed away a month ago. I met her when I knocked on her door. 15 years ago. She squinted at me suspiciously and I reassured her she did not know me. I introduced myself and inquired as to the cumquats over her back fence.  I’m sure I can’t do her justice in a Wednesday foody post but I’m sure to do a full post about her at a later date. I would hear from Kath around December as she would call people instead of doing Christmas cards. I knew Kath from when I lived in Clifton Hill before and straight after I developed my disability. Kath was a morning regular at the cafe near where I first lived and everybody knew her. From my visits with her I learnt she had been a nurse in the ICU brain injury ward at St Vincent’s hospital. When she would update me on her breakfast companions, she once told me they had “fallen off their perch!” Which I prefer “They went to God!” Which is how I diplomatically like to put it when someone dies. I know it’s really hard for the older generation when they keep losing their friends because they outlive them.

Kath 1

Every time I spoke to her. she would announce happily how old she was. It would go like this “Oh Helen I’m 94 this year and I don’t want to live forever.” She lived to be 97 which was a pretty good innings. I always found her interesting because she didn’t seem to have that Grumpy old lady era. I have a few other older lady friends and one of them has always been in that era and I’ve known her for the same amount of time and has never disclosed her age. What is it with older ladies and their age? My friend Betty is only 87 and doesn’t want to get to 97. Clifton Hill won’t be the same without her presence.

Kath 2

Otherwise have been in the city the last 2 days. Tuesday all afternoon even coming home in peak hour on the tram to get home just before 7pm! Didn’t even get my medicine. Might need to sneak in a second medicine later today.

Peak hour

So, today’s lunch is a salami pizza with a side salad and my medicine.

Salami PizzaSaladLatte

And just reporting my friend in Texas received her latest parcel only a week late. She seemed pleased! It’s gone already, apparently.

Package arrived

Cheers,
H

 

Fighting the Big Fight

Published April 30, 2018 by helentastic67

Fight the Big Fight

Fighting the Big Fight

You know those days you think “Wah” (like a baby) why do I have to be the one to stand up for when people are idiots? And if you don’t do something to make a change, they will keep being ‘idiots’. I had that moment as I often do a few days ago.

Being idiots

Now, by all means we all do it, sure, but then there are times it can be beyond painful.

Then there was yesterday.

I do like to upsize my meeting with my CM (Case Manager) to be help at my favourite café (Where I also go on a Wednesday) and then I wandered down to my GP appointment, so far, so good. Left the GP’s clinic and walked a short distance to the tram stop. I would normally walk to the next stop near the café so I get a little exercise.

Walking to the tram

Now the weather report. It’s a lovely day in Melbourne, it’s summer, there is blue sky and it’s not hot and muggy. T-shirt weather, everything is right in the world.

T shirt Wearing Weather

I was waiting for about four minutes for the tram, I could just hope the tram would be a flat-bed tram (Disability friendly) so I wouldn’t have to work so hard to pull myself up and get a seat. Then along came a woman, she literally huffed within a minute and she complained about the lack of trams. I told her they shouldn’t be far as I’d already been waiting a few minutes. I don’t normally check the timetable.

I decided to check the timetable myself out of curiosity. It was just before 5pm so trams run everything eight minutes. After 5pm, every six minutes. Not bad right?

Waiting for a tram

A young lady came just as that time and checked the timetable and had her head in her smart phone. Then announced it’s twenty minutes until the next tram, but then there’s three of them.

Negative Nancy and her sore legs.

Negative Nancy

I asked the younger woman how she knew this? She mentioned some Apps on her phone. I felt so old. I have a smart phone, but it’s under utilised and I refuse to put Facebook or my blog email on it, because the excuse I use is that I’m not 14…

Not 14 Anymore

I have my personal email on my phone for convenience, but mostly so I can cull the rubbish and anything of value waits until the end of the day.

Anyway, I digress Ms Apps (not a negative term) mentioned there had been a medical emergency on the tram, hence the hold up.

Negative Nancy: “Oh those people on drugs! I just want to get home!”.

Medical Emergency

Seriously? Was there a Zombie Apocalypse I didn’t know about? I tried to level the situation by saying “You know, if someone is sick or ill or had a heart attack on Public Transport, they are legally bound to get them an Ambulance. If no one dies, it’s okay!”

Ambulance 1

Negative Nancy (you know she had something to say about that) “How long does it take to get an Ambulance?”

Don’t know if you’ve had to get an Ambulance, but I have and I wasn’t dying nor did I think I was dying and I was cosy in bed waiting, so it was no drama. It takes as long as it takes.

Again, I suggested whatever the commuters need, they would be triaged with everybody else.

Ms Apps stated she would walk to the next stop, it’s normally what I do and I nearly went with her, rather than submit myself to anymore shitty energy from Negative Nancy.

About a minute later a tram came around the corner down the hill. So, I decided our time together now had a deadline and decided she needed to be told. So, politely I started:

“I know you have maybe had a tough day and your legs hurt”

She attempted to cut me off thinking I would pander to her delicate temperament, but I did not let her.

“Yes, Yes, I know! But what you don’t realise is that right now, I can’t feel my left foot and most of my left leg.”

I started to also indicate a part of my left side and back I used to lift my left leg and despite my

“I have low vision badge,” she didn’t notice. I told her I had half my eyesight. Her demeanour changed instantly and she stated.

Invisible disability

“I’m so sorry! Had I known I wouldn’t have.” and she told me I looked ‘Great’ and good.

Hidden disability is a curse isn’t it?

She really hadn’t had her eyes or paid any attention to my cuff and collar on my arm or my walking stick.

The tram arrived and she eventually stepped aside to allow me to get on first to get an appropriate seat for me to not fall over getting on or off.

Two people got up to offer me their seats and I took one of them up on the offer, very much appreciated.

Negative Nancy took a seat to my left in my blind spot simpering like she deserved the seat.

She started to try to make conversation with me but I was really over it, so pulled out my phone. Conversing with her on my left would have given me a migraine and if you think that meant the trauma was over, think again.

Conversation finished

On my right was a guy on the phone, he was talking to a work colleague who was using drugs and driving around with his kids in the car.

Um, does anyone else want to hear about this shit on the tram? Unless it’s broken up with words suggesting they are going to get him help? No!

But instead, he punctuated every sentence with the biggest sniff and hark back, it was disgusting.

Luckily for him, he got off about five stops before me, otherwise I could imagine I would have silently help out with a packet traveler tissues and if he had been offended and told me he was not a child. I would have growled at him. I’m too young to be his mother. But here we are.

tissues

 

Blame

Published January 29, 2018 by helentastic67

Blame

Blame

I’m not sure if it’s just Acquired Brain Injury (ABI) or the whole disability, but I find I get blamed for all kids in my family or even just my home. I’ve had some new carers of late and one is my new Saturday/Sunday lady. She wouldn’t come for less than 90 minutes, so I figured I could make it work by giving her some odd cleaning jobs.

Clean fridge

Nothing major, but on a Saturday, I’ve asked her to clean a shelf in the fridge (it will be all clean eventually) and other things that rarely get done (cleaning the cutlery drawer or cleaning the front of the kitchen cupboards). The second Saturday, after washing went on the line, I know she didn’t do any of the other tasks as she had found the new foodie magazine on the dining room table.

Magazine on table

She commented to me I really liked cooking and Donna Hay’s recipes were easy. When I remarked to my mum, she said it was my fault, I left the magazine out on the table.

Donna Hay

The message was rather scathing, I didn’t know where else I was to have put it, in my own home…

It’s my home, I don’t leave out bills, cash, bank statements. I’m wondering if anyone else experiences this?

I can’t wait until I get my next Neuro psych, I’ve had countless, but my mum is insisting on being there next time. (pointless/counterproductive) and she wants to be there for the debrief.

Psych

She says it’s so she can better understand my ABI, but I know it’s going to lead to me better understanding my behaviour and then changing it to suit the family.

Behaviour

Nearly fell over on the tram today, Yes! It was the day I was carrying that darn cool-bag, but still number 1.

Why do people who don’t fit the criteria to take up those seats with signage stating they are for people who are elderly, disabled or pregnant. While I’m here, can pregnant ladies not sit in my seat in their first trimester. Please! You just look a little fat, sorry. Save it until you’re nine months pregnant.

Disability seating

Today, I wriggled up by asking a young woman to hold my walking stick, being weighed down by both my bags. It took an effort to push myself up.

I put my hand on the wall behind the driver’s cabin and had to balance so as not to fall backwards when the tram lurched forward. I stumbled and a woman behind me to the right, screamed out that I had trodden on her foot.

Stepping on toes

She dropped the F* Bomb to describe how much it hurt. I muttered an apology, but I had struggled to remain upright and had thrown my right hand up and grabbled the headrail. The woman holding my stick looked at me concerned, I think she wondered when to give me the stick and I had to wait for the tram to stop. I will often lean my shoulder or hip against that wall of the driver’s cabin to get my balance.

Falling over

I had to ignore the woman who complained I’d hurt her foot. I had apologised and I think her feet weren’t anywhere near her seat and she hadn’t realised how precarious my situation had been nor did she care.

I did notice she didn’t look like she had any of the pre-requisites of taking up those seats.

I don’t know how I’m supposed to fix this situation…

fixing it

Pain to Avoid Pain

Published December 22, 2017 by helentastic67

Pain to avoid pain

Pain to Avoid Pain

Today, amongst all my other choices, appointments and allocated for today, I decided to restock on some pills.

Panamax, OK, if you don’t know it, it’s similar to Panadol. I like to imagine that’s worldwide. Sure, Panamax is in the Opiate family, But, for crying out loud.

Panadol

The effort today, I went to get 3 packets (300 tablets) for a cost I can afford, you would think I looked like someone who was going to go home and chow down on all 300, in as little time as possible.

Allow me to do some dumb maths.

I can get a script from my GP, one packet (100) $6.30

I can get a different script from my GP, 3 packets (300) $6.30

Then there’s a bulk chemist that’s low on bling and high on affordability.

Cheap chemist

Today, I hit a shop in the city where I had hoped to get all 3 packets and I was surprised they were only $0.99. But, I was only allocated 1 packet (100).

FRUSTRATION

I explained Panamax is not my medication for serious pain relief. I joked it’s in the Heroin family and we all laughed.

Ok, it’s higher up in the food chain in the family of opiates.

I use Oxynorm.

Oxynorm

The facts

5 mg’s works in about thirty minutes, lasts about three hours.

I’m not going to get much help at all from Panamax. No matter how many I imagine I would need to take. Not suggesting I’m going to try. Not issuing a challenge to anybody else. But, I often meet people who are medicated for short treatment with something like Endone.

Endone, the basic facts.

Endone

Takes a little while to kick in. For Helen level pain, it’s barely going to take the edge off for thirty minutes.

So, those who get head spin from Endone? Amateur. Anyway, general education about opiates over.

After a few brief stops in the city, I catch a tram half way home. It’s not a flatbed tram (not disability friendly) I manage by pulling myself up with my good arm.

Flat bed tram

Half way home, I get off the tram to venture to another Chemist, this time, Panamax one packet (100) $2.00.

Still one packet short for the target for the day, I really don’t want to go through this again for a while.

Ah! Quick calculation, I go through in a week, so I get back on another tram, up two steps and catch the tram almost there and hit a third chemist.

Dedicated Right!

Third Chemist another $2.00.

Bad habit.

Get back on tram, about five or 6 tram stops then walk home about twenty minutes.

I can feel my left foot and it’s not happy.

My pedometer tells me I’ve done 5,370 steps today. That’s when I’m wearing my bag since my clothes don’t have pockets.

Pedometer

Let’s hope my brain remains pain free as it would be counter-productive to need more opiates.

Isn’t it funny that we suffer some to avoid other suffering later? It’s a calculated risk.

Suffering

 

Hidden Pain

Published August 26, 2016 by helentastic67

hemiparesis-simulator_1

Hidden Pain

So, I know I get a little backlash out there. My disability has managed to leave me with the ability to walk with the aid of a walking stick (Not complaining).

And therefore I have a level of independence to go out and do things.

Yesterday was Monday, I had my Carer at 9am. We were done an hour later. I made my own breakfast and light lunch. I actually ate my breakfast on the couch for a change. I often eat it in a hurry on the train to the city on the days I go out. Ridiculous!

My appointment wasn’t until 3pm and while I really wanted to go back to bed and to sleep I figured my Landlord was due to mow the lawns. I’ve been watching it get long and overgrown the last two weeks. And let’s face it, I had to get to Medicare to claim two receipts. Medicare is my ‘Other Bank’ and I don’t claim much these days.

So, off I went to the city. That translates like this;

Text my Young John (will tell you about him another time; get your tissues ready) Young John drives me to a train station closer to the city. It’s more convenient and a train goes through every 10 minutes.

Get on train and in the city in about 20 minutes. The train platform is an easy one for me, it is just on Platform 1 so right out onto Flinders Street and cross.

I crossed between 2 pedestrian crossings to save time. Traffic had stopped all the same.

I made a stop at the shop I used to visit to have a quick chat to Peter. He was the 3red stop for me, back in my Promoter days every Monday Peter runs a little independent Music/Clothing/Tattooist/Body art/Gothic shop that is literally down an alley and down in the basement. Awkward stairs. Handrails not on the right but I make it in one piece, because I won’t QUIT!!!

I once flew down the stairs and up again but after a little catch up.

No independent bands touring anytime soon either. Peter goes up and comes back down for me in the lift.

Still had to do about 10 steps down to street level. Anyway, I give a nice older lady some directions as she looks a little lost and confused (don’t we all?).

Walk several large blocks to Medicare. Feel good! Big strides, can see and most people respectfully move out of my way. Not everyone, but most!

Medicare a busy place. Don’t want to wait today so I fill in the forms. Very little information required. Staple and put in the post box.

They will process and by tomorrow, I’ll be $106. Richer!!

Anyway, cross two streets. And wait for a tram.

Catching trams in Melbourne

I’m only going halfway home as that’s where my appointment is. But the tram isn’t a flatbed tram. It’s not disability friendly! So, three big steps. Word from the wise, lead with the stronger leg and I always sit just inside the door. Commonly referred to and by other disabled friends as “My seat!” We each call it that and when we are together we prioritise who needs it more. Or this allows me to sit there because they are gentlemen…

Anyway, get to Collingwood and go into shop that requires a few steps. No handrail. Walk 15 minutes to appointment. Was warm as the last day of summer in Melbourne.

Time to sit for a bit before my appointment.

I see Gerry who does Shiatsu every 3-4 weeks for an hour, he works on my back, shoulders and arms and a little on my neck.

Afterwards, he gives me a lift up the street (it’s uphill) and I heave myself up onto the tram again for the 20 minute journey home.

Off tram at my stop and walk 10-15 minutes. Happy to get home, not too desperate for the loo. 5 steps up and inside!

So Tuesday. Got the day off today. No appointments! Just phone calls to make sure my Carers are sorted for the next 10 days and any transport needs.

Struggle to get it together! Things hurt! For once my head doesn’t hurt but my thighs hurt and my right shoulder and arm. And it hurts to walk. Want to make reference to feel like, I’ve been on a horse for a week, but don’t know what that’s like. Dragging my left foot a little today.

Lastly, while my transport yesterday was all fine and Gerry volunteers his time today I’m paying for it!

Every step, every curb I negotiated I’m feeling it today! And tomorrow we do it all again.

Closer to home this time, but Wednesday is my pinchy/stabby day.

Chiropractor followed by Acupuncture. Two appointments I have weekly to help me maintain my independence. Having a disability really is a full time job…

 

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