Fading away

I’ve never thought of myself as skinny. I knew that I wasn’t fat but I always felt broad and solid.

But something happened. I needed to use a belt when I wore my fitted jeans.

I think I have been on the run for the last five months or so. Don’t get me wrong, I still take time off to unwind – watch TV/movies, read books at the beach and spend time with friends.

However there have been changes at work and my role has changed considerably. One week I had to go to the country to help co-facilitate a program. The mornings were early and we had to run (well, not run but you get the idea) between two towns to train two different groups. Because we rushed I was never able to eat a proper snack waking up early I was never in the mood to have a good breakfast and my meals were not as big as they used to be.

When I wake up early in the morning my energy is low. My body sometimes doesn’t listen to me and it is hard to move around. I know that I have to eat something But I don’t have it in me to make a big breakfast. I end up having a coffee and maybe an English muffin, crumpet or a piece of toast.

Sometimes I would eat a banana on the way to work but I knew that wasn’t safe. I was neglecting my health and I knew it wasn’t right.

At work I was teased because I was constantly eating. I either had a mini cupcake or donut or brownie on hand. The thing was I never finished them or the delicious treat would last the whole day (except for the mini cupcake of course).

I never really thought about how those foods lacked substance and no nutrition. Really those foods are a waste and should be replaced with muesli bars, fruit or nuts.

It’s not just about food. I’ve also become quite active. Working out at the gym three times a week and going to physio twice a month. And of course just walking takes a lot of effort for me.

There are a lot of things at play at the moment so of course it’s going to impact my appetite. Of course I am going go find it hard to motivate myself to force myself to do something I’ve lost interest in. But I burn a lot of energy and I need food to keep me going. So, all I can say is:

Bring on the carbs, the protein and the junk food!

PS: my uncle and aunty, Willy Zygier and Deborah Conway have released a new album this year. They performed recently on Q and A and here is the clipclip. Check it out!

Decisions, decisions

It’s been too long since I last put up an entry but I have to be honest with you all, my desire to write has just died. I don’t have that sense of need to write any more. I am sorry about that, readers. But seriously, what’s the point on writing if there is nothing to write about.

Well, life has been full-on for the last couple of months and I have had some amazing experiences one of which I mentioned in my last entry.

I have found a development that is perfect for me. Two bedrooms, two bathrooms, balcony, underground parking and of course a lift. There are no steps in front of the building and it is in an area close to a supermarket, a couple of cafes and close to people I know.

The apartment seems perfect and I was very excited when I found it.

But it has taken a while to actually sign the contract because there is so much to take into consideration, especially around the issue of accessibility and being disability friendly.

You have to remember that I am coming from a place of total ignorance for two reasons: I have never built my own place before and I haven’t always had a disability. When I first moved out on my own I moved into my grandparents place and so I didn’t have to do anything as it already had furniture and everything was set up. It even had rails in the shower and next to the toilet. There were no adjustments that were needed to be made.

I was pretty darn lucky. And I guess I am lucky now because I have the chance to create something unique and specific for my needs.

When I met with the architect for the first time, we discussed the width of the hallway from the front door. I hadn’t realized how important it was until we started talking about the future and that one day I might need a wheelchair.

I don’t know much about wheelchairs or scooters and that may be due to my fear of facing reality. However, I have found out that according to the Australian Standards, hallways have to be 1500mm wide so that two manual wheelchairs can fit side by side.

I have also found out that a wheelchair can take up a lot of space when doing a 360 degree turn. And there’s no way that I want to ruin my brand spanking new walls.

The architect mentioned that the width was going to be 1200mm wide and that just won’t do.

After speaking to an OT, we have come to the decision that the width can be 1350mm wide and that will fit a mid-rear wheelchair. These chairs turn around on the spot making for a tight turn and not taking up much space.

Of course other issues came up when I met with the architect – hand rails in the shower, a hand rail next to the toilet in the main bathroom and lowering part of the bench in the kitchen.

There is still so much to think about and many more meetings to be had with the architect and the developer. It’s a major life change for me and it’s an exciting one. An exciting one with lots of hurdles along the way.

A reason to smile

I have been neglecting my beloved blog but I believe I have good reason for doing so.

2013 has started with a bang and while there have been a lot of stress overall it has been pretty damn exciting and positive.

The most amazing thing that has happened so far is that my health has been great and while I have bored you before and told you what I have been doing, I can’t help but want to share (and gloat) about it some more.

For the first half of last year I was going to the gym twice a week and attending physio once a week where I would workout on the vibroplate for 45 minutes.

My workout schedule changed around August last year. No longer was I going to the gym twice a week or spending 45 minutes on the vibroplate but I switched. Instead I was doing the vibroplate twice a week, going to the gym once a week and then in October I started seeing a physio once a week.

From what I recall I have shared this with you already and I told you how the physio had me standing on one leg while the other leg was hanging out elsewhere in the air.

Since sharing that story I have been using the wobble board (slap me if I shared this with you as well).

At first I wasn’t able to stand on it without falling off straight away. Then my trainer told me to focus on something in the distance, find my core and breath.

And whammo!

Suddenly I was perfectly balanced. Even though I had to hold on to a chair in front of me, I was holding onto it lightly and eventually I was standing on one leg and one of my hands was holding on to the trainer’s hand.

Now I can stand on the wobble board and close my eyes for short stints.

At the start of last year I never dreamt that I would be able to balance on a wobble board with my eyes closed, let alone even stand on it without freaking out.

At the start of last year I was even thinking that there was no way that I could improve. I think I was feeling sorry for myself and wanted to give up.

But now things are different. I went to see one of my doctors a couple of weeks ago and I told him what I was doing: the gym, physio, vibro, and yadda yadda yadda. When I finished my never-ending list, my doctor leaned back in his chair and said: “whatever you are doing, keep it up, because I can see an improvement”.

My condition may never be cured but I can improve.

Wow.

I never thought that I would hear those words.

You know what?

I can live with the stress.

All I need is a sentence like that and all is good in the world.

(Short but sweet post, but sometimes those are the best!)

Starting the year off with a BANG!

At the beginning of each year I think about what resolutions I want to make and whether they are achievable or not. Of course I could come up with some fantastical ones, such as climbing Mount Everest (could you really see me dragging Scarlet up there?) or becoming a vegan (sorry, I like my meat and I love my leather jacket). We all could, but what would be the good in that? It’s important to come up with resolutions that a: I want to achieve and b: are achievable.

I have to be honest with you all. I haven’t been that motivated this week and I really would enjoy another week of sleeping in and reading another Janet Evanovich book. I only just discovered her books and really, they are pretty trashy but oh so addictive.

It could be that 2012 was such a big year for me and I achieved so much – became a consultant, travelled overseas, became a journalist for an online magazine – that I can’t come up with anything that could top those things. Also, I am pretty tired from it all and I need to re-boot for the New Year.

Whatever the reason may be, nothing really comes to mind except for one thing: finding a place to live. Wait, I’m not homeless, far from it, but I have been looking for a place that I can call my own.

The search went on for over a year. Many apartments had what I needed but there was always something wrong. Two steps at the entrance, no parking space near the apartment, location too far from a family member or friend. And when I did find something, it just didn’t work out for one reason or another. But yes, the main issue was access, which is something that is of huge importance.

So I gave up on looking for an apartment and decided to look at developments in the area close to my current residence.

For years I always dreamt about living in a cottage or an old style apartment where I would drink cups of tea, eat short bread biscuits and write novels. Sounds wonderful, but then, on the other hand, I have always liked the idea of living in something totally modern in a very hip area. I would have my local cafe where i would buy my coffee and wander back to the apartment where i would play words with friends as I sat on my balcony. It seems that the new has trumped the old and by the end of the year I should be – hopefully – living in my brand spanking new apartment.

Before this happens there’s a lot to think about and do. As I am buying into a development, there is a particular style that the developer and architect have decided on. They have also come up with a couple of colour schemes for the interior of the apartments and so I will be choosing one of those.

As a person with a degenerative condition and a disability I have to think about my current situation and what could happen in the future. Together with the builder we have gotten rid of the step to get into the shower and there will be an attached seat to a shower wall that I can pull down when needed.

Of course there’s a lot more to do but I shan’t bore you with it all now. You will definitely reading a lot more about this New Year resolution.

Happy New Year everyone!

My friend Sam

When I attended FD day in New York in June I met a man named Sam and we spent some time together.

Anyway, Sam and I started talking and he revealed to me that he had a documentary made about him last year and this year he had a book written about himself. But what really sparked my interest was that he mentioned that he is an actor.

Sam has a visual impairment and needs the support of someone to get around.

Sam went to a special college for the visually impaired and majored in acting. He is now part of a theatre group for able-bodied and people with a disability. Sam has also had some roles on TV and walk-ons in movies.

We got on well in New York and we stayed in touched via Facebook. It wasn’t consistent, a like here, a comment there. It was also nice keeping tabs on Sam and looking at his rock climbing photos.

When I found out that he was traveling the world with a friend and stopping in Melbourne for a few days I suggested that we catch up. And boy, did we catch up!

One day we had lunch in St Kilda and we shared our war stories along with our interest in movies. Another day we went to the movies to avoid the 35 degree heat. It didn’t register that he couldn’t see properly until I realized that I had to guide him through the building into the cinema. Of course I had to be cautious because of my walking but then I had to be doubly cautious as Sam had his hand on my shoulder and I had to dodge other movie goers. It was an interesting sight, I’m sure.

Thanks to the kindness of a good-looking usher, he ushered Sam to his seat and I was able to manoeuvre myself into mine. We saw the Perks of Being a Wallflower which follows the story of a young boy making the transition into high school after going through a number of traumatic experiences.  I don’t want to give the whole movie away, but I do recommend it and I do recommend taking tissues. Or maybe I’m just a softie.

Sam and I finished our time together by having dinner in St Kilda. Once again, it was just the two of us and we chatted about the possibility of us both getting a scooter. Big Topic for both of us and quite confronting. Thankfully it was shut down when suddenly I felt myself veering to the right on my chair and the next thing I knew I was on the ground. Sam jumped up to my rescue but suddenlya group of men had picked me up and put me back on my seat. Maybe I should have milked it and pretended to struggle more but all I really wanted was it all to end.

But wait, there’s more.

Before I had the chance to take a breath, suddenly Sam had knocked his Coke over and it spilled onto my fabulously tight and vibrant watermelon coloured jeans. Thankfully, they survived the disaster.

What a way to end the night!

We finished our evening off by acknowledging that there is a connection between the two of us. And there is.

An FD connection that not many people share.

It was great spending time with you, Sam. I look forward to our next adventure in either NY or London.

extra, extra! read all about it!

Once again I have been published on the Divine website. This time I have written about a woman I work with and the friendship she developed with a complete stranger on her way to work. To read it, go to:

http://www.divine.vic.gov.au/main-site/lifestyle/relationships/connecting-with-a-glance;storyId,9018

You may remember me, even if it’s been a while

Yes, I’m still here and I haven’t been hiding. 2012 has been a crazy year for me. I’ve been working two jobs and doing some writing on the side.

The work that I do at Yooralla is rewarding. I love it when I help a person get some funding so that they can get away for a weekend to spend some quality time with their family. I love it when I set two people up for the peer support program and they hit it off straight away. When I see them smile or show me a photo of their time away I get so warm inside. Corny I know.

Anyway, my two jobs have had me running in different directions and meeting so many people that I have no chance of remembering their names (but I do remember that cute coffee guys name, that’s for sure).

When I’m not working I am focusing on my health. I’ve been seeing a neuro physio for the last couple of months. This woman is a magician! She’s had me standing on one leg with my other leg dangling in another direction. She has straightened my left and loosened up my right side. Also, she has shown me how to straighten up my shoulders. Some of you may have noticed me doing some weird movements with my upper back. Don’t freak out, I’m just doing my exercises.

When I’m not doing physio, I am hanging out with my family friend Carl who specializes in rehabilitation through the vibroplate (http://en.wikipedia.org/wiki/Power-Plate). Carl gets me to do squats, lunges, dips and plenty more as I stand on the machine. It’s a vibrating platform and the base vibrates as you do your exercises. The vibrations activate muscles that normally get neglected and it has really helped me with my balance.

After the physio and the vibroplate then comes the gym which I go to once a week. No more weights and squats but using a new piece of equipment called the Oov (www. http://oov.com.au) . This rubber device activates my core and helps me with my balance and walking.

It’s never ending and it’s tiring but work and exercise are important to me. Without one I wouldn’t be able to pay for the other and without exercise I wouldn’t be able to achieve the things I do.

Alongside all this I am also writing for the Divine website. It’s hard to come up with new ideas every month but it keeps my brain active and I enjoy interviewing people for my research.

 I want to finish this blog off by saying I may have protested in the past about being called Superwoman and I am just living my life. But today, as I write this, I do feel like Superwoman and damn, I feel proud.