The one where I sort of blog about my day job

 (source)

When I started writing this blog, I didn’t forsee how far it’d take me. I have scheduled this blog entry to automatically publish when I am on the plane to Canberra. I’m in Canberra to talk about blogging. For a work related event. This is the first time blogging and my day job has collided. (I’ve also realised that finally, my e-commerce degree has relevance, almost 10 years after its completion!) I’ve had some pretty big personal achievements through my blog, but this one is quite special, because my colleagues and management have recognised me as a blogger.

I don’t write about my day job here. This blog is my space to write free from editorial constraints and the inevitable hierarchy that lies in an organisation. You don’t really want to read about my day job anyway. While I enjoy it and find it exciting (most days) it wouldn’t make for interesting reading, and besides, I can’t divulge information about my workplace in such a public forum. But each time I write here, and even though my day job and blog content is so far removed, I have my day job in the back of my mind. What will my boss and colleagues think of my inner most thoughts? (And I know some of my colleagues read my blog.) Have I represented my employer well? Why can’t I rant about the frustrating phone call I had at work? Am I able to post the picture I had taken with a celebrity who I met at a work event? Can I write about the need for the government to provide better support to people with disabilities?

The Australian Public Service Commission has guidelines about employees making public comment and participating online – in both official and unofficial capacities. While I am always myself on this blog, I still censor myself, being mindful of the values and code of conduct that I need to follow as a government employee.

This guideline document states:

“In May 2010 the Government provided its response to the Final Report of the Gov 2.0 Taskforce, Engage: Getting on with Government 2.0. The Government agreed to the report’s central recommendation—a ‘declaration of open government’—which stated, in part:

online engagement by public servants, involving robust professional discussion as part of their duties or as private citizens, benefits their agencies, their professional development, those with whom they are engaged and the Australian public. This engagement should be enabled and encouraged.”

And this is good news! It reinforces that as a blogger, I can have my own views and opinions, and participating online is good for my professional development. Colleagues often come to me asking for social media advice, knowing that I use it so much outside of work. “What’s the difference between a blog and a forum? How do we use Twitter internally?” It’s nice to be acknowledged, and to know that social media is now regarded as more than just Farmville and (un)tagging drunken photos.

I have given some thought to how to be a responsible blogger/social media user and employee. I don’t think it’s exactly the same as the proper use of IT guidelines enforced within the workplace – there is bound to be more control over what you do on the internet during work hours and with work resources. I believe the way you use social media outside the workplace is a little more relaxed, but you still need to be mindful that your outside behaviour may also impact or reflect on your workplace.

I also think it’s a little like being a responsible blogger and hospital patient. I was discussing with my thesis supervisor that I have a dual responsibility – to be a good public servant and to be a role model in the chronic illness and disability community. This responsibility is there, whether I choose it or not.

Here are my top five tips for social media while being mindful of your workplace:

-          If you are putting your name and photo on your blog/Facebook/Twitter, be accountable for your words and actions. Does it reflect you in your best light? Does it reflect your organisation well?

-          Don’t criticise your employer or their policies/products on social media. Conversely, don’t provide advice about your employer’s policies and products – unless you’re their social media spokesperson.

-          Get permission about who/what you’re blogging about. Don’t name people or post their photos if they’re not comfortable.

-          Show your organisation the benefits of social media. Show them examples of how companies have embraced it and use it well. Show them the way you use social media responsibly, and have achieved results. Give them a reason to trust you and social media.

-          Have fun and be yourself. But be mindful of the social media guidelines your organisation has set.

Wish me luck for participating on the discussion panel. I hope to blog about it soon :)

How do you separate your work from your blog/social media use?

It's a long way to happy. Accepting your lot in life part 2.

(source)

I received such a fantastic response to the post I wrote about accepting your lot in life. Thank you to everyone who took the time to read, share and comment on it. I had lots of people say the post resonated with them, even to the point of thinking about their own happiness. Thank you.

I've still been thinking of happiness and acceptance, and the feeling of being apologetic for happiness if you've got something 'wrong' with you. It's a shame we have to apologise for happiness.

I've also been thinking about how I (and others) have come to be happy and accept my (and their) illness or disability. I've been thinking about positive body image and believe it's so more than the arguments of shape and size perpetuated by the media.

I watched a video by Paralympian Jessica Smith, who was born without her left forearm, and struggled with depression and  an eating disorder and acceptance of her body for a long time. Jessica has found happiness and self acceptance now, and is working to promote the attitude of happiness as choice. People left comments in the article about Jessica, asking "but how do I love my body?". Jessica provided an honest response which you can read for yourself. But for now, here is some of the advice I have about loving your body and accepting your illness. I think this post is one of the most personal I've written, so here goes.

(Please consider that this advice is based on my own experiences, and I am not a counselor or medical professional. If you need further advice, visit a mental health or medical professional.)

Tell yourself you're worth it. 

You're beautiful, you're smart, you're funny, and you are fighting a big battle. You're as good as any supermodel, any leader of the in crowd, any 'normal' person. You are worth it.

Sometimes I stand in front of the mirror, in my bra and undies, and tell myself I look hot. I admire my wrinkle free skin and curves in the right places. I feel good about my stomach and boobs. And then I get dressed, feeling fabulous.

Get to know your illness or disability. 

Learn about the medical and emotional aspects of it. Talk with your doctor, ask them questions if you don't understand something. If you need emotional support, ask your doctor whether they can put you in contact with a mental health professional.

Talk about it to your family and friends and colleagues. It's not something to be ashamed of. And I think talking about things makes others more comfortable.

Laugh about it. There are funny sides to everything. At Christmas last year, we had a feast of turkey and duck and vegies and desserts. My Dad asked me "how's your skin?" and I said "yeah a bit sore, but it's improving now I am a bit more rested". He laughed at me, and then I realised he referred to the duck skin! And I realised my illness is such a part of me, that skin is so often a topic of conversation! We had a big laugh!

But don't become too bogged down in questioning your illness or disability. I believe things just are. It's no one's fault. Don't place blame.

Hang out with positive people - those that don't bring you down.

The reality of having a chronic illness and a visible disability is that people stare, tease and exclude. It is hard to find a place where you belong at school, but finding where you belong will make you happier.

I know that this is not easy when you are at school. I haven't always been this happy, particularly at school. I was excluded from many activities because kids thought they'd catch my condition and they didn't want to hang out with someone so unpopular as me. I have been teased, spat on, stabbed with a protractor, called names and excluded. That was the worst thing - the exclusion. I spent a lot of time in the school library alone. I absorbed myself in books and music, and these characters became my friends. I didn't like being lonely. I didn't like people not wanting to hang out with my on the weekends. I didn't like only having teachers visiting me in hospital. I remember telling my parents that I wish I was in hospital more, because I had friends in there that understood about being sick and being different. Even if the pain of having staph and wet bandages and needles was so hard to bear, I'd rather have been in hospital than at school.

I eventually made friends - with other kids in hospital, and with the people outside of the in-crowd at school.

Know that it will get better once school is over. I made friends instantly when I started work in a department store aged 17. I wished I had started working earlier. The friends I made there are friends for life. And on my first day at uni was nothing like the school yard.

And all that time alone has made me very comfortable doing stuff alone as an adult. Seeing bands, eating out, going to movies. I'm fine doing it alone. 

To round off this piece of advice, I'll share a story that I am very proud of (but probably shouldn't be). It was like a verbal slap. I spent a lot of my time at highschool hanging out with people who made me feel bad about myself. Maybe it was because they felt bad about themselves. And maybe I just wanted someone to make me feel a part of a crowd. So on the second last day on my year 12 exams, I was in the common room, talking to this girl who I hung out with. She was possibly more unpopular than me. I was telling her about this boy that I had formed an online relationship with, and the previous night he had called me for the first time. She asked me if he has said "I loved you" yet. Yes, he had. And then she asked if he had seen what I look like. He had - I had scanned in my school photo and sent it to him by email. She then said "how will he ever love you when he knows what you look like?". I was gobsmacked. I said to her "you will never be beautiful because you are too fucking ugly on the inside". This was about half an hour before our history exam - her last exam. She took what I said, and cried. Loudly. I don't know how she did in her exam. I never spoke to her again that year, though she sent me an 18th birthday present to make up for what she had said. Then on my first day at uni, she came to talk to my new friends and I. I was civil. I wasn't scared, because I had new friends on my side, who accepted me for me.

Talk to people about your feelings.

Talk to your parents. Your siblings. A counselor. A blog. Write for the world to see. Lifeline or Kids Helpline. You are not alone.

When I was nine, I told my parents that I wanted to commit suicide. I don't know if I knew the impacts of suicide, or what it really meant. All I knew is that I didn't want to be here if I wasn't accepted, if I didn't have friends. My parents sent me to a psychologist. I have a good memory, but I don't remember any of those sessions. Maybe the brain is programmed to shut off things that are too painful to remember. I guess they helped me, because I've never had those feelings again.

Avoid things that make you feel bad about yourself. Do stuff that makes you feel good.


I stopped reading the magazines that told me how to give my boyfriend the best blowjob he's ever had and that told me how to diet to fit into that size 6 dress. I didn't want the media telling me I'm inadequate.

I've also avoided most support groups for my illness. Because I find they bring me down. It becomes a competition of who has it the worst, who is the sickest, and who can handle it the best. Illness and disability is not a competition. Pain is relative. Your battle should be with your own body, not fighting someone else's.

I do stuff that I enjoy because it makes me feel happy, and it's enabled me to meet friends. I dress up, go out, do everything that I want. I'm not going to let how I look stop me.

Help others with illnesses or disabilities.

Getting involved in mentoring young people with chronic illnesses was one of the best things I've done. It was challenging and rewarding, and I learned so much. I learned what I can offer is valuable, and that I gained just as much from the support these young people gave me.

You don't have to help others with your exact illness. I think you really notice that you have so much in common with the chronic illness disability community even when your symptoms vary so greatly. And it's a great way of meeting people.

Volunteer to speak on a radio or TV show about yourself. Write. Volunteer at an organisation that's making a difference in the community. You won't regret it!

And now for some other perspectives. A few young people with chronic illnesses have given me permission to publish their responses to this question:

What has enabled you to accept/come to terms with your illness, and allow you to smile beyond the pain?

Their responses are so well considered and articulate. Love these. 

"Just having the friends that accept me for me". - James

"Knowing that it's not your fault. And knowing that it's OK to smile". - Linda

"Knowing that there's always someone in a worse position, and that's a reason to keep your chin up". - Jesse

"‎^ absolutely. Knowing that there might be people who don't have any disabilities or illnesses, but they might be living on the street, or something. Knowing that no one has a perfect life:. - Linda

"I guess time, knowing that you are born with it and it's not your fault and that you are still alive no matter how you where born. Also knowing there are people who are in the same or similar positions and know what you are going through". - Eliza

"Plus I guess there's always the fact that people who smile live longer :)" - Jesse

"The one person to help me accept my illness and my 'life' as such was my best friend who passed away from cancer. She said 'life sucks sometimes Jess; but God it's beautiful'. Seeing my friends, desperately fighting for their lives, and still smiling and laughing, joking and loving this beautiful life; that is what keeps me going and what makes everything ok, even though it's not". - Jess

"Knowing that there are lots of blessings I do have and not concentrating on the hardships. Seeing that despite being sick compared to a lot of people in the world we have amazing lives full of blessings". - Nicola

"And besides; who said that being sick means you have a bad life? It's a hard life, but not a bad one". - Jess

"I call it my alternative lifestyle :P". - Jesse

"Eliza and I refer to bad health days as 'Luna days' after Luna park. It looks pretty scary and creepy at the entrance, there's a lot of crazy rides, but you get to go along with friends and there's lots of fairy floss and despite everything you can still have a good day :)". - Jess

I hope you found some of what I've written useful. I just want you to know, it will get better. 

 If you need any mental health support, contact the following:

Lifeline - 24/7 telephone counselling service - 13 11 14 -
Suicide Callback service - 1300 659 467
MensLine National -  24/7 support for men dealing with relationship and family issues
- 1300 78 99 78
Kids Helpline - 24/7 telephone and online counselling for young people 5–25 years
- 1800 55 1800
Reach Out! - Online crisis and mental health information for young people
SuicideLine Victoria -  24/7 telephone counselling for people at risk of suicide, carers and bereaved - 1300 651 251

Bill Cunningham New York DVD giveaway!

About two months ago I saw a documentary that made me so excited for my trip to New York. Bill Cunningham New York documents the story of an octogenarian photographer, cycling the streets of New York City, snapping shots of women who catch his eye.

Bill Cunningham loves accessible fashion. And so do I. I was with girlfriends at dinner the other night, and while loitering in the foyer of the restaurant saying goodbye, I nudged one of the girls and said "look look, I want to dress like her", pointing to a girl wearing a gorgeous peach floaty dress and a faux fur shrug Perfection. And so we all turned our heads to ooh and ahh, and all agreed that we could achieve that look very easily.

Here is part of my review:

 Aside from his dedication to doing what he loves, for the love of it only - was his acceptance and open mindedness towards New York's diverse community, despite his generation. He's friends with people of all ages, races and sexual orientation.

Another thing I noticed were his older female friends who were ageing proudly - looking glamourous - dripping with jewels and wearing luxurious clothing, and maintaining youthful spirit (Iris Apfel classes herself as 'the world's oldest teenager') but their faces were marked with age spots and wrinkles. It was beautiful to see.

Watching this documentary gave me a sense of excitement about what's to come when I go to New York. I thought about what clothes I will pack (the big issues) and the sights I'd like to visit. I'd LOVE to meet Bill! The documentary gave me the confidence to just be myself (in New York and elsewhere) - for individuality is interesting.

You can red my whole review of the doco here.

The lovely people at Madman Entertainment read my review and were kind enough to send me some DVDs to give away to my blog readers. I have four DVDs to give away - three region four DVDs (suitable for Australian DVD players) and one region one DVD (which plays on DVD players programmed for world wide or region one codes).

Bill Cunningham New York would appeal to fashionistas, street style enthusiasts and those going to BlogHer '12 in New York this August.

To enter, leave a comment telling me what's your favourite thing about street style. Perhaps it's inspiration for an addition to your wardrobe, or maybe you love being photographed by a street style snapper. Remember to leave your contact details so I can contact you when you win. Looking forward to seeing your entries.

Entries close 5.00 pm Australian Eastern Time Monday 2 April 2012. Good luck!

The lazy Google - advice needed for what to do in LA.

 (source)

Help! I have been reading up a lot about New York and London, and have stuck post-its in my guidebooks for these cities. But I've neglected to research LA. I'll be there for three days in late July with my Mum.

We don't want to go to Disneyland. Ok, I admit, I actually do, but I think it's quite expensive.

We both love food and I know that LA has some awesome markets and restaurants.  And the food trucks. Oh the food trucks... But we can't JUST eat.

I can't spend all my money before New York, so I probably don't want to spend up big at shopping centres.

I am not outdoorsy but love celebrity spotting.

I really like Savage Garden's Santa Monica. I hope it is just like the song.

Tell me - what can we do in the day, where can we go at night? Where should we stay?

Google is too big to do a search, so hopefully my blog readers can help me! Thank you - I'll be sure to send you a postcard :)

No words, just pictures.

Pretty much food porn. Enjoy my cooking.

I cut the kabana. Not a euphemism.

Buy brooch from So Little Time Co.

Study. Guest post. Food. Jim Stynes.

I am finishing off my literature review for my thesis, that section is due on Friday. In doing so, I have been reading some interesting books including some on blogging and digital literacy, and another called Pride Against Prejudice - Transforming attitudes of disability by Jenny Morris. It was written in 1991 though still so very relevant. As I delved further into the chapters, I nodded with the concepts, identifying with the way people perceive those with disability, illness and disfigurements (especially since I gave that concept a lot of thought here).

There's a section in the book about the experience of being different. Morris lists a lot of assumptions people make about those with disabilities, and this one was such an lightbulb moment for me:

"That we can't ever really accept our condition, and if we appear to be leading a full and contented life, or are simply cheerful, we are 'just putting a good face on it' ".

I really urge you to read this book if you are struggling with acceptance and identity of a disability, chronic  illness or physical disfigurement. Interesting stuff.

-

I am featured in a guest post on That Space In Between. It's a little interview and me in a duck hat. Please pop over to check it out, and also take the time to read Sarah's beautiful writing too.

-

On Monday night I had dinner at Miss Chu with Heidi. It was delicious as usual, and so good to see her again. 

_

Yesterday Melbourne football identity Jim Stynes passed away after a three year battle with cancer. He was not only a football player and club president, but also a youth worker - founder of the Reach Foundation - and throughout his life and cancer battle, gave so much to the community. While his battle with cancer was so public - and I can't imagine how hard it must have been for him and his family that it was so public - it also meant he reached so many, inspiring them and providing them with hope.

His legacy transcends football. I was listening to reports of how he shaped peoples' lives, and he seemed like an amazing man. He's survived by his wife and two young children. I have two friends who have been involved in the Reach Foundation, and I chat to his sister as she works near me. My thoughts are with his family and colleagues. I don't pay attention to football but I paid attention to him when he featured on the news. Despite his cancer, he had the most amazing attitude. He said of his cancer, "I needed to get a better life and cancer has led to a better life". I think he can teach us what's important -  to live life and appreciate it to the fullest, and help others where we can. Rest in peace Jim.

 (source)

I love social media

(source)

Many people I know are quite naive about social media - and the internet in general. Scared in fact. They think sharing updates and photos about their lives on Facebook is dangerous. They don't understand the perceived mundane tweets of Twitter. "Why do you want the world to know about what you had for breakfast?" people have asked me. And "what's a blog?" is the question I get asked when I speak of my blog. "An online diary" I say.They freak out at the thought of me sharing so much of my life online, and some have commented they think social media is a waste of time. For me social media is the launchpad for my writing career. It has also brought me so many new friends. I've put so much of my life online and nothing bad has happened to me - in fact I get less harassment online than I do 'in real life'.

This week I've had a few social media wins. I don't know whether these wins will influence those that are scared about social media to start using it in any way, but I hope they can see that social media can be for good.

First up - I was a the supermarket last week, looking for washing up gloves. I am allergic to latex and cannot use the regular rubber gloves. There were no latex free gloves in my local Coles. So I took a photo of the wall of gloves, and tweeted Coles.

 

Coles responded really quickly to my first tweet, and true to their word, on Wednesday, send me a follow up tweet.

I thanked them and included Chux in my reply. Chux make the gloves I can use. Within minutes I received this tweet from Chux.

 

And on Saturday a huge parcel was waiting for me at the post office - full of Chux goodies. It was the first time I was excited about cleaning products!

I received seven pairs of latex free washing up gloves, two boxes of food preparation gloves,a stack of different cloths and sponges and some other cleaning products! My cleaner will be pleased! The hamper also came with a lovely letter apologising for not being able to send me gloves in size small.

I was SO impressed! Impressed with Coles' tweets, and Chux's prompt service. Wow :) Thanks Chux!

Follow Coles and Chux on Twitter.

Next up is something that has been in the pipeline for a couple of weeks now, but it was confirmed officially last week. You may notice I have a disclaimer on my blog. 

This blog represents my personal opinions and experiences. It does not reflect those of my employers'.
The information I provide about ichthyosis is mostly based on personal experiences. Please seek medical advice or counseling before trying any new treatments I've written about.

After seeing that someone from my organisation's IP address had visited my blog a high number of times, and coming across an updated social media policy, I gave the Australian Public Service Commission's (APSC) ethics helpline a call to discuss whether I should put a disclaimer on my blog. After our conversation, I researched some different disclaimers, and put my own together.

A few weeks after that conversation, I received an email from the APSC asking me to speak on a panel about the responsible use of social media as a public servant. So while many of my fellow bloggers will be at the Digital Parents Conference next week, I'll be in Canberra speaking to a range of government employees and stakeholders about how I keep my blogging and social media activity separate to my day job. I am so pleased to be recognised for my blog in the workplace. I have asked whether I can blog about the event, and they don't see a problem.

Another thing I am pleased about is the spread of my my blog entries and lovely comments, particularly from the medical community after my post about responsible social media use as a patient. 

And there have been two other (quite frivolous) social media wins.

A tweet from Bob Evans at 4 am telling me I was amazing!

 (Patience from The Grates suggested that I must be amazing given he tweeted me at 4 am!

And this - the only time I will be featured alongside model Erin McNaught in a magazing - my tweet in Shop Til You Drop mag.

Finally, I received an email from the Sydney Writer's Centre telling me I've been nominated for the Best Australian Blogs Competition for 2012. Whoever nominated me, thank you from the bottom of my heart. It means a lot that people come to read my blog, and value my writing enough to nominate it in this national competition.

So from all the criticism that social media cops, it's been pretty good to me, especially this week. For the doubters out there, give social media a go. You may make some really good networks and friendships.

Share your social media good news stories with me and my readers.

Not a very exciting post.

I have been a little absent from blogging this week. I haven't been well, felt quite tired, and paying some much needed attention to my thesis.

I've got a few ideas for posts in mind, so stay tuned. Must get back into writing lots and scheduling posts!

On Friday night I went to Northcote to see bands play - review to come. I met a friend of a friend who had this awesome tshirt. And I had to take a photo! I need one of these!

I've been reflecting on the good times I've had lately, and as much as I like to spend time alone, I love spending time with awesome friends. I feel really content. It's nice.

I have to do some cleaning before the cleaner comes, and cook dinner now, so I'll sign off. But I promise my blogging mojo will return soon :)

I hope you've all had a good weekend.

Ichthyosis. Accepting your lot in life. Gill Hicks.

(source)

"The weak of this world would not be able to cope, adapt, and live with Ichthyosis. The condition is a blessing in disguise. You're strong. He's strong, She's strong, Together, they are untouchable."
~ Nick Jones

Sometimes when I talk to others with ichthyosis (or parents of children with the condition), or even others with chronic illnesses or disabilities, I feel like I may be unrealistically positive. I see the best in this (often shitty) situation. As I wrote last week, my life isn't as gloomy as some expect.

I worry that people will see me as smug or blunt, or even a little arrogant, because I've just come to accept my lot in life.  Too happy even. "This is just how it is", I tell people. "I just get on with life. I have to". And I believe what I say too.

My ichthyosis just is. A genetic condition that I was born with and that I will have for the rest of my life. I rarely plead or ask for answers. I'm not depressed (and my lack of depression has been questioned). I'm not looking for the latest treatment or cure, and I'm not questioning why this 'happened' to me.

I don't lay blame and I'm not resentful. I've been asked a few times whether I blame my parents for passing on this genetic condition to me. I take offence to this suggestion. Never. (And I may be safe in saying many children with genetic conditions don't blame their parents for it either.) My parents didn't know they had the recessive gene. They didn't do anything to cause ichthyosis. They did the best they could raising me. And I thank them for giving me the support and love to create a positive attitude, become somewhat resilient and accept this condition.

(I understand that people with chronic illnesses and disabilities - and their families - feel frustration, and do ask for answers. When I was a child, my parents, with my best intentions in mind, took me to various dermatologists and witch doctors in search of a cure, until I said "enough". I understand (and have experienced) that living with a chronic illness or disability is not always easy or happy - there are are a range of emotions that come with having a chronic illness or disability - and I think emotional treatment is just as important as medical treatment. I also understand that blame will be placed. And all of that is ok too.

And I have only met one guy with ichthyosis in person, the rest of the contact I have in the community is online, so perhaps my written communication does get misinterpreted sometimes. I guess I just want to demonstrate that people with ichthyosis can have a fantastic life. it's all in the attitude.)

For me, it's about self acceptance and self awareness. I understand this condition makes me sore (sick) and I am comfortable adopting the terms 'chronic illness' and 'disability', because this condition is more than just appearance based. In fact, describing it by these terms make it easier to articulate, especially in the workplace. When someone always looks the same each day, it may be hard for others to detect when they are unwell.

I realised I had a chronic illness when I began to mentor young people at the hospital, I was a lot like them. We were like a mixed bag of lollies.Though our illnesses were vastly different and at varying levels of severity, our illnesses affected our lives in similar ways. Time off work and school. Isolation, bullying and misunderstanding. Trips to the specialist and hospital. We had our illnesses since birth or a lot of our lives. Some of the young people were milk bottles, others jubes. There were whizz fizzes and strawberries and cream and jellybeans. I was the Redskin of course. But we all came from the same bag, sharing familiarities of similar routines. And like lollies, making people smile, because we are just being ourselves.

Of course, not everyone needs to adopt this term 'chronic illness'. Call your condition what you like, even if you refer to it as a 'life ruining fucker'.

An illness/disability/condition/disease/life ruining fucker is what it is. It's medical terms exchanged by doctors and nurses, pain, difference, isolation and loneliness, heartbreak, stares, exclusion and adjustment.

But it's also a blessing. It means being able to stand out to the right people. It means being able to influence positively. It means being able to have a different perspective and perhaps a deeper understanding of human suffering. It's about having the confidence to be yourself and accept your lot in life.

One of my dear friends Jess - a beautiful person and an incredibly gifted writer who has a severe chronic illness - wrote this for me for an interview I did (for an article that I have not written yet):

"I am sick. I have been, at times, profoundly disabled. This does not mean that I have a bad life. I have a difficult life, yes. But I also have a beautiful life. Anger and sadness cannot and will not place me into remission. It will not bring my beautiful friends back. It will not save the lives of those I love still fighting.

So this morning, as every other day, I will swallow the tablets which keep me alive a little longer. I will spit blood into the bathroom sink. Then I will wear my prettiest dress, a splash of red lipstick, and I will smile.

Today I am alive, and that is the most incredible of gifts."

I listened to an interview between Richard Fidler and Gill Hicks. Australian Gill Hicks became a double amputee and sustained many other horrific injuries in the 2005 London bombings. It's an amazing story of survival, acceptance, perspective and anti-hatred. Gill is a 'peace activist' - establishing MAD Nests - a network of peace initiatives - the antidote to terrorism.

(source)

Gill's interview was so engaging, and I really do urge you to listen to it. She spoke about the terrorist attack - while she is angry, she bears no hatred toward to the terrorists. And despite her absolutely horrific injuries, she has taken on this life changing event for the best. She found unconditional love in her rescuers and while she fluttered between life and death, she made a decision to give back to the world when she recovered. One of the things that stood out for me is the humour she saw in her situation. She said that even though she was revived, she still has the same sense of humour as before.

You can hear Gill's interview here.

As I listened to Gill's interview, I realised that it is such a wonderful thing to accept your lot in life and affect change. You can choose anger, or you can choose to understand and make a difference to yourself and others. While Gill's life has changed in a way most of us will never know (she spoke of her having more chance of winning the lottery than being involved in a terrorist attack - and joked that of course she didn't win the lottery!), she carries on with such grace and acceptance.

She's an amazing woman. She can teach us a lot about self acceptance and awareness of
our illness/disability/condition/disease/ and show this fucker need not ruin our lives.
.

Sunday Snippets - long weekend

It's a long weekend in Melbourne. The weather is glorious, it's lazy, I feel more on track with my thesis - drawing up a timeline and narrowing my focus, and I don't have to go back to work until Tuesday. Happy days.

This morning I sat on the couch for two hours, reading a magazine and listening to the radio. I really read it too, not just flicking through the pictures. Relax, it was SBS Feast, not a trash mag!

Here are some photos of the first half of my long weekend. Photos arranged by Diptic, published with Instagram.

First up - morning tea and laughs with Cam at Hasfrau in Yarraville. I love Hausfrau - it's a homestyle German bakery, with rustic yet pretty sweet pastries and cakes, and hearty savouries.

From top left: mini tartlets that Cam bought - I ate a custard and strawberry one when I was sitting down. Elderflower drink - I love Elderflower and wish I drank it more. It's big in Tassie. My Croque Monsiuer (toasted ham sandwich topped with bechamel and cheese) served with two salads to make me feel better about eating pure bechamel! The sandwich was divine, but the salads really won me over - feta and beetroot, and pea, egg and spinach. Yum! Cam had a lemon syrup cake and a coffee.

Cam gave me two beautiful tops she picked up from the op shop - an apricot cardi and a sheer black ruffle blouse with silver buttons. We also went to an op shop in my neighbourhood where she got two footstools ($4 each!) and I got (possibly) a brand new Sportsgirl dress ($6) and a pretty dinner set ($10). It was a lovely morning!

Next stop was a nap. I was a bit sore by this time and worried I wouldn't make my next appointment - seeing my friend playing in a band at Moomba festival. Unfortunately I needed to get my face right and missed his band (plus I walked so far just to find the stage!) but I did meet him and we walked around looking at the colourful rides and then watched a band (The Paper Kites). Moomba was fun, but a lot of people, and it was quite warm too.

I then got the tram to Mamasita where I met another friend. We had to queue for a while - but not too long - gosh I wish restaurants would take bookings! - and then had a drink at the bar. Here's what we ate. From top left: a Mexican style salsa verde, spicy fish taco (mine) and corn (my friend's).

From top left: self explanatory cider, chicken quesadilla (my friend's) and hickory smoked salmon with quinoa and chill (mine). That salmon was probably the yummiest cooked salmon I've ever had - I prefer my salmon raw or smoked and cold. The skin was crisp, the sauce was like honey, and the salmon was at the perfect level between raw and cooked.

We went back to Moomba to see Owl Eyes (she does the best version of Pumped Up Kicks) who was just lovely. Then we headed our separate ways. I was so glad to get into bed after all the walking I did. And so I watched Lily Allen's Riches to Rags doco on iView, which I really enjoyed.

Right now I am off to do some more writing and then cook a scallop pie, as challenged by my Dad.

Have a great rest of the weekend!

This post is part of TinnieGirl's Sunday Snippets meme.

Being a responsible hospital patient on social media

 (source)

A couple of weeks ago I got into a conversation on Twitter with Natasha Mitchell, host of ABC Radio's Life Matters. Natasha and I met at the Yooralla Media Awards in 2010 - an episode of her previous program, All in the mind took out the best radio broadcast.

She tweeted a link to the Victorian Government's Department of Justice social media policy - which is a really good guide for anyone who works and uses social media. She also previewed the next day's episode of Life Matters which featured Melissa Sweet of Croakey Blog and Debra Cerasa of the Royal College of Nursing Australia discussing the ways doctors and nurses are exchanging information through social media. You can listen to their discussion here.

In summary, the discussion was about the way social media keeps healthcare professionals connected to others in the profession, and stay informed of local and international progress. The Royal College of Nursing uses Facebook to keep nurses informed of events, and to enable groups of nurses to keep connected.

The recent industrial action campaign by nurses has seen a huge social media presence, with messages on Facebook, YouTube, Twitter and on the streets. I've had friends in the healthcare industry post messages of support for nurses, including messages aimed at politicians - in a very responsible and professional way. I believe this professionalism is because of the acceptance that social media is a valid (and instant) form of media, and awareness of social media policies.

Of course, social media in the healthcare industry is also a concern - because people are afraid of privacy and confidentiality of patients. Debra spoke of how the principle of privacy is not different to previous information platforms (such as handwritten notes). She spoke of the regulation of social media use in the healthcare industry to prevent privacy leaks.

Another topic discussed was breaking down the hierarchy between doctors and patients, in the form of a twitter discussion where doctors, patients, researchers and anyone else who is interested in the subject matter can take part.

Natasha posed a question on Twitter and the program about whether hospitals would respond well to negative feedback left by patients via social media. (Barwon Health is one of the healthcare providers leading the way in social media - being open and transparent and also managing risks through the use of their Facebook page.) I responded to her tweet by saying "I attend hospital so much that I am afraid to blog negatively because I need the care of doctors and nurses."

So just as I take care to use social media responsibly by not writing about my work or being seen as representing it online (note the new disclaimer on the side of my blog, on advice from my work's ethics department), I also take care to blog (and tweet and Facebook, and even speak on No Limits) responsibly about the healthcare I receive.

Social media is a great platform to voice opinions - good and bad - about products and services. The case that comes to mind about my voicing my dissatisfaction of a service was when a woman told me to get out of her store because she thought my face would ruin her clothes. I outed her behaviour and store, wrote the facts, posted a photo and received a lot of online support, especially via Twitter and Facebook - including an opportunity to speak on ABC Local Radio in Albury Wodonga about the power of the internet. I guess it was that moment that I realised the power of blogging, and the support it brings. Back then I was quite fresh to blogging, and didn't consider potential legal ramifications of the situation. I actually raised the case with a number of bodies, who couldn't help me, and so my blog was the best platform to promote awareness, and quite frankly, vent. Would I write something again, if a similar event happened? Yes I would, being careful of course.

But I'd never vent my opinions about a bad experience with a hospital or doctor on my blog or social media. That would be a problem for me and the hospital/doctor to sort out privately. Because I need the hospital in my life, and wouldn't want to sully the good relationship I have with them by writing an angry blog or tweet in the heat of the moment.  I believe that just as healthcare staff need to follow social media and privacy policies, patients who use social media need to be similarly responsible.

Of course, I expect that even when a patient does vent angrily about a bad experience, they'll be seen to with the highest level of professionalism - a doctor or nurse is likely to remain impartial. But I wonder whether that doctor or nurse would be worried about the trust in the relationship being breached further, by another online rant?

I write about going to hospital a lot. The last two times I went to emergency I tweeted about how I hate the smokers out the front (and had the Cancer Council tweet back telling me smokers aren't the major culprits of this, it's the tobacco manufacturers...ummmm??). I do vent privately about experiences I've had - but I'd never vent about an actual or perceived negative experience at the hospital on my blog. Not even something trivial. I don't want to risk it. I need that hospital to keep me well. And I'd hate for a staff member to lose their job over something I've written. I put my name to my blog. My dermatology team know I have a blog. I've discussed how to deal with being seen as an 'expert' of my condition online and being approached for support. They have print outs of my articles in my file. 

When I was in hospital last year, one form of entertainment I made for myself (and others) was to take photos of my meals and post them on Facebook - being a keen amateur food photographer. While I wouldn't joke about the taste/quality of the food (the photos told their own story) my friends would, and my Mum joked to me that soon the hospital would be making me buy my own food! I didn't think it was a danger to share my hospital food on social media because everyone knows what hospital food is like!

Blogging is great for writing about the difficulties in life, and gaining support, especially when you or a family member has a chronic illness or disability. I've certainly used it for this purpose, to tell my own story. But in my opinion, a similar level of professionalism and awareness as healthcare staff should be used by patients when writing about the treatment they received. You're not invisible on social media. Even if you blog anonymously or only use your first name, or don't identify the hospital or doctor, you have a presence that will be noticed. By all means, don't gush if there's no need to. And raise your concerns with the hospital, in private.

But don't run the staff down who are doing their job to make you well. Even  if you don't agree with them. Information on social media spreads like wildfire. And reputations are ruined quickly.

Post script: I have a great dermatology team at the Royal Melbourne Hospital. I think we have a good relationship, and I am very open with them about the service I receive. Of course, going to hospital as an in and out-patient comes with its challenges, and I've experienced a few.

What are your thoughts? Should you be using social media to vent about bad healthcare service?

I think this is turning into a food blog.

Since I downloaded Instagram, I've become a bit obsessed with taking photos of most meals I cook, buy and eat. I tend only to take photos of cafe breakfasts or if I cook them on the weekends. I just don't have time to set up a photo of my weekly breakfast - plus my daily smoothie/oats/ fruit yoghurt muesli is pretty boring. And my work lunches are mostly left overs so it's rare for me to photograph those.

Food gives me so much pleasure - the cooking, the browsing, the sharing. And photographing food helps me remember those good times. For those wondering, I create frames for my photos with an app called Diptic.

Here's what I've eaten in this past week. Enjoy this.

Last Sunday dinner, home cooked. Macaroni and vegetable cheese - cauliflower, orange pepper, squash, zucchini, kale, green chilli, feta and tasty cheeses, béchamel sauce and wholemeal pasta - plus ginger beer. It was a hot night so ginger beer was really refreshing. My Dad gave me that cow plate when I moved to Melbourne. I love it.

Weeknight dinner: home made baked cannelini beans with tomato, capsicum, garlic and red chilli, topped with goats cheese. This would have made for a great breakfast too.

 

Crayfish from the Victoria Market night market on Wednesday night. Jess, my friend and social media consultant extraordinaire, went to the final night market of the summer, after work. I also ate some pork crackling (it came in a cup, but it was very salty and chewy and I felt guilty about the fat content so I only ate four pieces) and Jess and I both had corn fritters which I wasn't impressed with. This cray was fantastic - lots of meat and really sweet and juicy.

 

Lemon and chocolate-raspberry cakes from The The Premises. I had been recommended The Premises by Jentopia and yesterday was the second time I went for breakfast. Last time I went I had the French toast with meringue (really good!). Yesterday I had eggs on toast with smoked salmon. It was average, and to be honest, I think it's pretty pricey compared to The Auction Rooms and Three Bags Full. As I paid, I was tempted by the cabinet of cupcakes, and chose two to take to Steph's house for morning tea. The lemon cupcake had glitter on top, which made it even more appealing. Steph and I said as we've become older, we prefer fruity cakes over chocolate cakes. We cut the cakes in half so we could sample each flavour. "I don't want this lemon cake to end" Steph said. I agreed. The cake was so full of lovely lemony flavour, and was rich and dense and I think there was a dollop of lemon curd in the middle. So. Good. The chocolate-raspberry one was good, too, but the lemon stole my heart.

 

Contrary to what it seems, I don't eat regular meals on the weekend. I eat brunch at around 1030 am and then don't eat until dinner. Last night I was starving, though at 5 pm, it was hospital/old person's time to eat dinner. So while dinner was in the oven, I made a platter of goat's curd brie (if you haven't tried this, make sure you do - lots of bite, but soft like traditional brie), hot salami, chilli olives and peach. I had a bottle of elderflower cider - I had hoped it tasted more elderflowery, less cidery, but not the case. Maybe I will need to mix elderflower cordial with plain cider?

 

Saturday night's dinner was inspired by BabyMac - her blog is full of amazing meals and beautiful interiors and cute children - though I varied the recipe a little. It is chicken pieces baked with garlic, onion, tomato, chorizo and sweet potato, and seasoned with olive oil, lemon zest, oregano and chilli flakes. It was really good, and there's plenty left over for tomorrow' lunch.

 

I went to the farmer's market yesterday morning. I love the farmer's market, especially the barbeque breakfast. I had already done my shopping, so didn't buy much produce other than grapes and capsicum. I bought a mini cupcake from Play Lunch - they had a huge range of intricately decorated and flavoured cupcakes. I bought a cookie dough cupcake, topped with real cookie dough. So yummy. I loved the animal cakes, and I asked if I could photograph the gift box. The condiments list is what I had on my poached egg and polenta - featured in the bottom right (the best value breakfast in Melbourne I think - so tasty and healthy). And the grapes are lovely too!

I bought a sausage roll for a late lunch. God it was good. Turkey and pork mince, with lots of seasoning and cranberries. The pastry was light and flaky. I could eat these often! I am not sure of the company who makes them - next time I will take note.

Finally - last night's dinner - salad of roast chicken, tomato and pine nuts with spinach, grapes, corn off the cob and fresh chilli, seasoned with lemon, oil and balsamic, topped with sheep's cheese. It was fantastic! I kept the chicken bones to make into a stock this week. I may start a catering company. I love food.

Love the skin you're in. Love the skin others are in.

"I couldn't possibly handle looking like you. You look hideous."
~ Stranger in lift.

I wrote and helped direct that video for No Limits. It's a true story, only reversed, hopefully to show just how jaw-droppingly blunt people are about appearance. I wrote a little about that video here, last year.

When you look this different, it's as though you are public property for people to comment on and criticise, and say exactly what they think, no matter how insulting. I imagine it's a little like being pregnant - people commenting and dishing out advice willy nilly, though I don't get strangers coming to touch my tummy.

These past few weeks I've had a lot of discussions and spent much time thinking about being different. I've spoken about it in radio interviews on Light FM and The ABC, to the Centre for Appearance Research staff and Scope, and written it in a speech proposal.

And I've concluded that it's often other people who have more of a problem with how I look than I do. And people make assumptions, that those who look less fortunate' than them are leading less fulfilled lives. This has to change.

I reflected on appearance and assumptions when I wrote my speech proposal for the UK. I am completely happy with my looks. Happy with my height, shape and size, like my curls, and love my fingernails, smile and boobs. To use the word even would be counterproductive, but for the sake of this piece, I am even happy with my face.

Yet people assume that I'm not comfortable with having my photo taken (and at times, have not been comfortable with appearing in a photo with me). They assume that looking the way I do is a burden (forgetting that the burden is actually the pain of the condition) and that I may not be achieving all that I am. And as you know, I am so very happy with life and all that I've done so far.

I happened to come across a conversation about my Roxette review earlier this week. Instead of discussing the concert and my experience, they discussed my appearance, making all sorts of assumptions. That I am burnt. That I was courageous (for meeting the band/living life??). And that I shouldn't be ashamed of the way I look. It was laughable. While I am sure it was said with good intention, I laughed that the conversation did not reflect so much on my appearance, but society's perception of normal and the level of comfort people feel when faced with difference.

My friend Elvira, also on No Limits, is stunningly beautiful, inside and out. She has spinal muscular atrophy and is in a wheelchair.

 

She thinks that there is a tendency for people to expect something different to what she presents when they see her.  "I think it can be a strange mix or both in particular when an individual sees me in my wheelchair from behind and then they get to see the rest of me. I can actually speak and interact with confidence which throws a lot of people off - in a good way, I guess?"

Elvira used to be overweight and in the past few years, lost a lot of weight. She believes when she was overweight, people may not have paid her as much attention because of her appearance, but it was also to do with her self esteem and attitude. "I was far more happy to sit back and slip under the radar and naturally did. I was very much the invisible girl on wheels", she says.

She speaks of the way people can assume those with disabilities have lives that are lacking.
"I think there is an expectation that when an individuals ability is limited in one area, that is mirrored in all other areas of their life."

She, like I, also believe in the importance of taking pride in our appearance, to make ourselves feel good. "I do however also believe that a lucky gene pool isn't the answer. This may be a generalisation but I think many people that rely on carers and use of mobility aides fail to take as much pride in their appearance. It may be harder and not as easy but there are ways around it and I think people forget to realise that it's about making an effort for you and not necessarily onlookers and critics" Elvira says.

I love dressing up, and it plays a big part in making me feel good. And as I once wrote, I think taking pride in my appearance helps to change peoples' perceptions of me. But I also think (although there may be a level of concern in peoples' reactions to appearance) people need to mind their own business about how others look, stop making assumptions and taking pity. Love the skin you're in, and love the skin others are in too.

PS: I wanted to take part in Edenland's Fresh Horses Brigade meme from last week, but I'm too late, and have taken my angry pants off. The theme was Sorry. I still have a few things to say on Sorry though. All tongue in cheek. Sort of.

• I am (not) sorry that my metabolism is faster than yours.No need to point out your jealousy.
• I am (not) sorry that I am more comfortable with my appearance than you are, despite.
• I am (not) sorry that I'm not what you expected.