Stories from a girl whose nerves get on her nerves.

Monday, 30 June 2014

Northern Adventures

This last week, I went up to Sydney with Mark as he had a conference for work. While he was off learning about "secret government business", I was free to bum around the city.

Two weeks before the flight, I called the airlines. When I called Qantas (the flight up), the guy knew exactly everything about my scooter. I was told I was fine to fly as long as I took the battery out and carried it as cabin baggage. Then I called Virgin Australia (the flight back down) and the lady I spoke to knew nothing about my scooter, but told me the same thing about the battery. Imagine my joy when checking in at Melbourne to be told that I "could take the scooter but had to leave the battery behind". Oh pardon? After a few moments, she did clear the battery to fly. Apparently the guy I spoke to didn't tell me that I needed a "dangerous goods code". I boarded the flight a little bit miffed. It's great fun when you get differing information from the same airline. One of the main reasons I bought the Luggie, other than it being fold-able and easy to use, was the airline option - the Luggie battery is well within Australian airline regulations - but I seem to have got someone at check-in that was very thorough and I learnt all about lithium batteries very quickly. Once we did hit Sydney, I spent a good 45 minutes on the phone to Virgin to make sure I was not going to have issues on the way back. Turns out, Virgin doesn't need you to get a code, you just need to add that you're flying with a lithium battery on your reservation and when I did get to check-in, I was cleared to fly with the battery straight away. I think I may be traveling with Virgin exclusively if I'm taking the Luggie next time! 


I had plans to meet a tweep in Circular Quay, so I decided to catch the train a couple of stops to save on battery. Here in Melbourne, if you catch a train with a wheelchair or a scooter, you must wait at the end of the platform so the driver can see you - they get out and help you on with the ramp, you tell them where you need to go and then they help you disembark at your destination. Trying to search for the procedure for Sydney trains was pretty painful - none of the websites were really clear where I would have to go to get assistance. So, I asked Twitter. It turned out that they have PLATFORM STAFF! Yes! Actual people! Not like here where it's "do it all yourself". I arrived at Central, bought tickets, went down in the lift, up in the lift at the platform and there was a man with a flag! I didn't have to go to the front of the train, I just had to wait with him and he called CQ to tell them I was coming and on what carriage. I couldn't believe it! Neither could the platform guard either: "You mean the driver has to get out to help you?" Oh yes they do. Three stops later, I was at the Quay. Absolutely brilliant and everything was so easy! Next time, I shall try the buses, but first I have to attempt a tram here. Where we live, we have the "super stops" where there is a platform the same height as the tram so that should be pretty easy too. 


Sydney people in general were lovely to me while I scooted along George and Pitt Streets. Of course, same as here, I did get stuck behind slow walkers, groups who walk 5 abreast along the footpath, and people who probably don't need to use the lifts but do anyway, making me wait for an empty one. Some of the gutters where pretty harsh and I did have to get off the scooter and pick it up over a gutter once, but hey, I have done that here too. The scooter really did make my days super easy and gave me the freedom to explore and socialise. 

One more thing - in searching for all things public transport, I did stumble across something very interesting. If you use a wheelchair or a scooter on trains, trams and buses, you can apply for a special PTV travel pass Myki here in Melbourne that gives you free travel. I guess it's to free up taxis and encourage people like me to use the service. Of course no one tells you these things and I only just purchased a new Myki! I'm applying tomorrow. If I get it, expect to see me out and around the place more!




Tuesday, 17 June 2014

Independence Day

My name is Danie and I don't hold a drivers license. 

I have never driven a car longer than 5 minutes in a driveway. 

Sometimes I do cop a bit of shit for not driving a car, which I find rather amusing. Mind you, not having a license for ID purposes does suck - I travel interstate with my passport. 
When I was 18, my rheumatologist sat me down and told me that driving a car wouldn't be advised due to the arthritis in my feet and knees. Plus my reaction times have always been pretty slow - even before the SFPN - and being such a nervous ninny, also meant I'd probably just have a complete meltdown on a freeway. 

As I got older and the PN hit, I still didn't care too much about not driving. I lived close enough to the city (for work and uni) and I had so many public transport options that I never really thought about it, plus I really loved walking, even with George the stick.
The lack of car for me only became an issue three years ago, when the body just packed it in and I was stuck. Sure, Mark drives, but also works 9-5, and sometimes, you need to get somewhere on a weekday, during working hours. Taxi's became my lifeline. Sometime unreliable, usually expensive, but the only way to get around as long as I didn't go too far. I used taxis so much that I became a VIP user and got the same taxi drivers often. 

When my insurance pay out came through, the number one thing I wanted and needed was a mobility scooter. I had had enough being dependent on taxis, I wanted freedom to go when I wanted to go and not have to wait on someone else to get me places. 
The scooter has changed my life - so when my old friend Pauline, who I worked with at David Jones, asked me to come into the city for a visit and lunch, I was so excited but I was also nervous. I hadn't been into the city alone or old work since my unexpected departure in September 2011. I was worried that the scooter couldn't hack the city streets and that I'd get the shakes from stress, but I did it. 
I left home, went the station, got on the train, got off the train, got to DJs (with only a couple of slight bingles), went to lunch, picked up Mark from work and came home again on the train. It was completely exhilarating! I even bonded with other scooter drivers on the train. We need a community meeting!

Yay for independence


Wednesday, 28 May 2014

Hello, my pretty!

Look at it. Look at it. It's stunning, it's red and it's mine.


I finally got my mobility scooter and my life has improved already!

It's gone to the shops (Bunnings, Coles, Officeworks and Masters so far), it's driven me to Mum's and I can't wait to take it on a train. I think I'm in love with it just a little! 

It's called the Freerider Luggie Electric Scooter and is available from Scooters Australia (I got mine at the Dandenong store). It folds flat, as you can see in the photo, and gets through tight spots with ease. Stop speed is 7kmh, so no drag racing for me, but it's fabulous! Feels super sturdy when I'm on it, which is great as I'm still learning how to cross roads and get up inclines. 

It's an expensive scooter, but it is worth it. I feel I have some independence back and that's pretty much priceless. 

Friday, 9 May 2014

Finally

I hadn't planned to write a new blog post for a while as nothing was going on and within about a week, everything is going on!

WE'RE MOVING HOUSE!

After casually looking at properties for a couple of weeks and not worrying about a time limit - there are plans to knock down this house eventually - we stumbled across something very suitable for us to move to. So yeah, we move in two weeks time. 
I have been throwing my sad and sorry body around the last couple of days, packing up the house again after 18 months of living here. I'm sad that it came to this, but the stress of moving far outweighs the stress of living here with the threat of demolition. Best to just make a clean break and since the last 18 months have been rather tumultuous, it's like a clean slate for me. We just hope the cats move as well as we do. 

I GOT MY INSURANCE CHEQUE!

After 10 months of crying and panicking, I got the cheque today. I won't be telling anyone how much it is for, but it's substantial and means I can support myself for a while. Of course it doesn't replace the sense of belonging like working does for me, but it does mean I can finally pay off debts and get my mobility scooter. I was asked on twitter why it look so long. Well, without trying to explain a Vogon from Hitchhikers Guide, it went like this:

  • Electronic Claim submitted.
  • Electronic Claim misplaced by them.
  • Hard copy of Claim submitted and claim began.
  • Various forms for GP.
  • Sent to their specialists.
  • Reports from them.
  • More visits to my GP and Psychiatrist.
  • Reports from them.
  • Various forms (sent in triplicate) about my work and education history. 
  • Forms asking about my lifestyle, including my presence on social media. 
  • Worst private investigator ever, parking outside the house for a week to watch me catch taxis on sticks.
  • Forms from GP/Psych sent back due to a date missing.
  • More visits to GP/Psych to get the dates straight.
  • Questions about my conflicting IDs. (Yes, my passport is in my full name, not Danie).
  • Funds released by insurance company but had to wait on trustees to pay me. 
  • Cheque sent.


BUT, this is not including all the times I had to call them to find out what was going on. I only called them on a whim this week to ask them when I was getting the cheque and they were waiting on me to call them to make the cheque out? EH?! I think in 10 months, I got three calls from them, every other time it was me calling to push them along. Red tape is fun like that! 

At least, things are starting to come together. I can breathe easier. 

AND, IT'S EUROVISION WEEKEND! WOOT!


Monday, 14 April 2014

After the storm

Well, it's been a interesting couple of days. Since Saturday night, this blog has had over 1,300 hits. It's been surreal and very overwhelming. Most of the feedback has been supportive, some has not. I'd like to address some of the personal and negative comments I have received before I go into what happened this morning when I made some calls regarding the MCG car park.

Most of the hurtful messages have centred around me "being lazy" for not parking in the city and walking back to the ground. For those who seem unsure what this blog is all about, I would like to point out that I write about myself; I suffer from a neurological and physical disability due to Conversion Disorder and Small Fiber Peripheral Neuropathy - you can look them both up on Google yourselves as I have explained this all before you arrived. Both conditions mean I cannot walk long distances due to numbness and nerve pain in both legs. I use crutches (THAT'S WHY THERE'S A STICK IN THE TITLE).

For the bright sparks who told me to walk from the Hilton in Wellington Parade, I dare you to do it with broken glass in your shoes, as that is the best way I can describe what walking feels like to me. It may be a short walk for you, but not for me.
To the person who stated that I was "obviously a person of privilege" and that this was "a non issue", I guess you are the be all and end all of what is deemed "an issue"? And to even suggest that being disabled is a privilege: you're out of your mind. Becoming unemployed and changing your whole lifestyle is not fun.
To the people who told me just to "get dropped off" - try doing that when falling is an issue and when sensory overload is also a problem. Ever had a panic attack or anxiety about being around too many people while alone? Add uncontrollable shakes that only your partner/carer can talk you down from and you may understand why I can't simply be dropped off.
Also, to the others who told me to "get out more", the irony of that statement is astounding - I would get out more if I was able and tried to on Saturday but you seem to have missed the point.

It's discouraging to see that some people don't see that the purpose of this blog is to highlight the issues I have personally. No one else can tell anyone else how to feel. I don't wish any of this on anyone else, but seriously, show a bit of compassion; it goes a long way.

Now that I have that off my chest, I can talk about other stuff. As I said in the last post, I was planning to get some answers regarding what happened with the parking.

I started with the Melbourne Football Club. They were very understanding and empathised with how I was treated by the park attendant. They suggested I call the Melbourne Cricket Club.
After 10 minutes on hold - they must have had a really fun morning - I got through to a lady that told me that on Saturday that car park was closed, including the accessible area (which I knew) and that there were no immediate plans to address the issue if this happens again. It's "normally ok" she said. I was also told to check their website before each game to check for parking as they actually own the surrounding car park, not the council. I asked her who I could contact regarding the parking attendant and she gladly gave me the direct number of the supervisor.
So, I called her and she was happy to listen. She agreed that the parking attendant in question (she knew exactly who it was after I gave time and location) should have handled things better and that the "drive into the city and walk back" comment was rude. She was, after all, talking to the holder of a disability parking permit which kinda means that there's an issue. She also confirmed that the MCG park had never fully closed before this last weekend (with no access for disabled patrons) and they were a little caught off-guard with the volume of people trying to enter both the Friday night and the Saturday game. She said that the AFL/MCG/MCC could have done more with warning patrons and suggested that clubs themselves alert members of parking issues. I have to agree with this point as I regularly get SMS from MFC and it would be a great idea, if this ever happens again.

Today's conversations probably won't change much, but I felt better having a chat about it and having my voice heard. It just so happened that I wanted to attend the football on the first weekend that everything had to close due to excessive rain. I have been assured that the car park will be mostly fine next weekend as long as the rain gods behave. Hopefully, one day, a Plan B parking strategy will happen and then people like me, can get out more... (wink)

Saturday, 12 April 2014

It's a grand old flag, only if you can walk.

I had been looking forward to going to the football all week. Since Mark is a Carlton supporter and I'm Melbourne, we try and go to the games where our teams face off. I usually spend half the game punching him in the arm and when Carlton wins, he gets to sing his song once and then it's all over for another year. Both of our teams were winless, so it was going to be more interesting than other years and a time to bring out the old joke of "who gets to sleep on the couch tonight". 

I got up early, dressed head to toe in red and blue, grabbed my new membership card, scarf and my old VFL scarf, which I take to every game, and dashed to the car at midday. By the time we got into East Melbourne, we could see loads of red/blue and blue people dotting the footpaths. I was getting excited. Going to the football now is hard because my body is not what it used to be - we have to drive in, get a park in the accessible area, find seats with minimal stairs to and from, and near a disabled loo. 

We didn't even think about the last week of rain. It wasn't until we tried to enter the car park at the usual gate off Punt Road that we knew something was up. It was closed. Then the next gate, then the next. We drove around to Brunton Avenue with the idea that one gate should at least be open for accessible parking as we could see cars already parked inside. The car in front of us approached the parking attendants. Words exchanged and they drove off. I said to Mark, "if we can't get in, we'll go home" and hoped that wasn't going to be the case.

We pulled up the the attendants and Mark flashed my blue parking permit. 
"All the gates are closed" she said "I suggest you park in a city car park and walk back" 
Beside us was a ute with a "disability and pass holder parking" sign in the tray. It was too late. 
Mark said "But we have a disabled sticker, there must be spots somewhere", she replied "No, but I can give you a phone number to call and complain". With that, Mark did a U Turn and we headed home. 

I got on twitter to say that we were turned away and I was told to walk. My lovely twitter friends rallied behind me, outraged as I was that there was no plan B for rain affected grass and accessible parking. I tweeted the MCG account and they dismissed me rather quickly. When I challenged them that it could be grounds for discrimination, they got more passive aggressive. I gave up. 

I wanted to cry, but I didn't. I was so upset and angered that I was not able to attend a football match as I can't walk long distances. We noticed the closest city car park to us was in Flinders Street and that was clearly too far for me. I felt that I was a second class citizen, a feeling I have not experienced in quite a while as usually, something can be done to accommodate. 

The game started when we got home and I was miffed about what had happened, I didn't even want to know about it. I kept thinking if only I could walk that far. Have public events become a right only for the able bodied?

I have been a Melbourne member for 28 years. I still pay membership as I love my club, regardless of where we sit on the ladder and how many games I can attend, but was love enough? If I can't have a guarantee of parking, is it worth going any more?

Some other things crossed my mind... 

Rain is inevitable in Melbourne, so why is there no alternate plan for when it does strike? There's a perfectly suitable parking area underneath the Southern Stand - shouldn't that be available during such times? There's also a concrete taxi drop off section near the MCC stand, could that not be extended for first in, best dressed accessibility parking in cases like this? How many others were turned away today because of this lack of oversight?

I need the answers to these questions, so I shall be calling the MFC, MCG and probably the council on Monday. This is an issue that needs to be addressed. You can't tell the disabled to walk. Everyone has a right to attend the football. 

Lastly, Melbourne won by 23 points and I missed it. I couldn't hold back the tears any longer. I'd never felt so torn over a win. If only...

Sunday, 30 March 2014

Stuff and updates

The worst thing about being home all the time is not a lot happens. Well, nothing blog post worthy. 

Other than me attempting to march in March in March (and doing most of it, then sitting on Hilary the walker for the rest), not a lot has been happening except... I GOT A NEW DRAWING GIG VIA TWITTER!! 
I've been designing greeting cards for a small business in the UK. I won't make much money on each card, but getting my work out there and the experience is totally worth it. I've been having a lot of fun and it's keeping me busy - two hours a day drawing everything and anything. Thanks to Scott for taking a chance on me, I really appreciate it! Hopefully, once I finish this lot, I can start on Christmas cards... Yikes, already? 









I have been spending a bit of time thinking about how freeing having a diagnosis is now that I have one. Loads of things from the past make sense now that I know, like when I started shaking one day at work and why I had an extra bounce in my step that I couldn't control for a week. People still will look at me funny when I walk down the street, but that's their problem, not mine. Sure, someone of my age will get a lot of second looks, wondering why I use sticks or a walker, but I can't stop people doing it. Some days, I don't mind telling people about my Conversion Disorder, some days I wish it didn't even come up. I'm still me. Sure, I can't walk properly and I can't be employed, but that's not going to define me. I'm still someone's partner, I'm still someone's daughter, I'm still fur mother to two cats, I'm still an artist, I'm still a person. I feel at peace.