Stories from a girl whose nerves get on her nerves.

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. 

Monday, 17 February 2014

A tale of no cabs

Last Tuesday, I got out of the house. After umming and ahhing over getting down to the shops with Mum, we agreed on going quickly and getting home before the school run crazy.

She picked me up at 1. After racing around a couple of shops and a quick lunch, we called a cab at 3pm from our usual spot in Riversdale Road. I'm getting to the point that going out is such a stress as we always seem to want a taxi during some freak shortage in the area. Here's the tweets from Tuesday. Note the time stamps:

A trip to Surrey Hills from Camberwell takes 10 minutes by car. Tuesday it took nearly 2 hours to get back to Mum's place.

If only I had the scooter that I want - I could have thrown myself up the steps on a tram (with assistance from Mum and with the scooter folded), gotten off the tram, unfolded scooter and zipped to her house. 

When I get stuck somewhere, I often wonder if going out was such a great idea in the first place and how annoying my disability can be. It really does work its magic on my brain. 

Thursday, 30 January 2014

Loony Luna

Tomorrow marks the first day of the Luna new year. Thank goodness. This last year has been a bit of a mess and I'm looking forward to new beginnings and hopefully the Horsey will bring good changes. 

I'm on a bit of an emotional roller coaster at the moment. Had to take a few days off Twitter and Facebook last week, to clear my head, and increased my Seroquel dose for a few days. Anything and everyone was setting me off and if I get upset, the body brings out its pain bullshit so it was best to close ranks than spread my misery all over the joint. Starting to feel better but still prone to random waterworks. 

If only I knew where I stood with this AIA claim. It's now been nearly 7 months since I lodged it. I haven't received a form in over a week so maybe no news is good news? Maybe they have everything they need? Or maybe, just maybe, they'll decide to pull me through the wringer one more time? Who knows. 

I have never been someone to really stress over money until now. Even when I maxed out credit cards, I never freaked out as I was working (for a crappy wage mind you) and knew one day, I'd work hard enough to pay that shit off. Now I struggle to pay the minimum each month. Who knows what life would be like if I didn't have a line of credit? It's a necessary evil - "pay later" is my mantra now. Bills don't stop if you're sick. I still need medication. We still eat. I've never been a big clothes shopper thankfully, but I just sewed a rip in my bra and most of my undies are full of mending scars. I do refuse to stop getting my hair done as it's a treat and I'm still vain, even if I don't go out much. 

On Monday, I waited for a cab to take me from the hairdressers to Mum's. I hate doing that as it's only a fraction over a kilometre, but it was about 40° and usually if I explain to the driver that I really need them, they're usually cool driving me to Mum's quickly and getting back on the road again. I was "dropped" by 3 cabs in 10 minutes, so I gave up and walked. I was fine until the half way mark and then I got this massive quad cramp in my right left. I limped more than usual the rest of the way, using the sticks to swing my leg forward. Stuff like this wouldn't happen if I had my insurance money as I'm looking to buy a mobility scooter. I have seen one that folds to the size of a suitcase so I could take that to the hairdressers in the back of a cab and then scoot to Mum's. Plus, having a mobility scooter means I could get back on trains, even go into the city alone for the first time in nearly 2 years. Only a dream of freedom for now as I don't have a spare $3,000.

One day Scott the Scooter, you shall be mine. 

Monday, 20 January 2014

Burning up

Melbourne threw a massive heat wave last week and my body threw a tantrum to join in. While the city got to 45°, my body decided to cramp and tingle. We don't have air conditioning at our house so it got to mid 30's inside, with only fans and a poor little cooling tower for relief. Thankfully for wet towels and Gatorade, I made it though the week, trying to fend off anxiety and exhaustion while feeling like my insides were cooking. The electric fans made my skin crawl when the air hit my body. I was so desperate to cool down, but the cold water felt like it was burning my legs in the shower. My hands would ache and shoot pain up to my shoulders but I wouldn't dare strap them in that heat. I was miserable, but tried hard to keep my shit together. 

Last Monday, before the heat got too unbearable, I had a double meltdown due to the idiocy of people. Firstly, I was left waiting outside the house for 30 minutes while watching "my" taxi aimlessly drive around Burwood via the cab app. He was assigned my fare at 12.58pm and was only 4kms away so I left the house expecting a ten minute wait. For some reason, the driver decided to drive around in circles before picking me up at 1.30pm, claiming he only got the call 5 minutes before. Not only was I left standing outside in the heat, with Bill and Bob as my only support, I also received another form from AIA - the same medical authorisation form I returned to them in December. I was absolutely livid.

When I finally got to Mum's, I called the cab company to complain. I was told I could only make a compliant online by a very gruff woman, so I got on their website and caps locked the hell out of it. While still shaking from leaning on my sticks in the heat for so long, I wanted to unleash hell on AIA as well. Seems the last medical authorisation form for my psych was lost, even though they provided me with an express post envelope and I have proof that someone received it at the address on December 18th. I told the woman that losing things like that was a privacy issue, but she had the air of the "don't care" and just wanted me off the phone. Thankfully, later in the week, the taxi company responded to my complaint and sent me CabCharge vouchers for my trouble. Like I'd never get any type of goodwill gesture out of AIA for crappy service! 

The money stuff is getting really bad. The longer AIA drags this claim out, the more things get put off or done without. With me not bringing in any money from anywhere, it has been left to Mark to cover everything: including rent, food and our private health insurance. Last night, he suggested that we put the cover on hold for three months. Sounds good in theory but brought me to tears. I can't even afford to go and see the GP or my psych at the moment for extra support, so it all falls to Mark and Mum to listen to me and console me while I cry. Our credit cards are at maximum. My savings are diminished. I knew this would be hard but I didn't expect the stress it's causing. 

I'm so scared these days. I dread visits to the mail box as I'm worried yet another form will appear from AIA as something's been lost or they need more information. I have no more information to give them. I'm done. If my claim gets rejected after all this, I worry that I will just break. I'm close to it. I live, dream and breathe anxiety at the moment, worried as I don't know how we'll survive living much longer like this. 

Tuesday, 7 January 2014

And so it goes.

Happy New Year from AIA Australia!

I received a new version of the same form from December! Happy New Fucking Year to me. This form is same but different, using a new and exciting font. Oh and boxes to tick. Don't forget the boxes. Woo. 

Plus additional questions like "Is English YOU first language?" (OMFG, PROOF READ YOUR FORMS) and "Do you use social media?" because these are SO IMPORTANT to my claim. Are they going to tell me that being on social media means I can work? Seriously. Social media is my only link to civilisation outside of my family. I ticked yes. I can only hope they find this blog.

I'm off to get a statutory declaration tonight to send off with this form, a copy of the form from December AND a copy of my original claim in July just to get my point across. I'm not hiding anything. I'm not trying to trick anyone. I just hope I stop slurring by the time I get to the police station or that'll be awkward. As soon as I got this form in the post last night, I fell apart again. As well as sounding drunk, I also have a swollen neck and lopsided lips. Always a great look to have in public as I can't even put lipstick on properly.

Will me filling out this form supersede all the other forms? Is this the end? I guess I'll wait for another version of this form to arrive in month. I should get stamps made with my info on them. Would save a lot of time.