That's a really good question @gina-RO and one I couldn't really answer until after the first time I'd lost a patient I was close to.   How do you look after yourself while doing this work?   I spoke with some of the nurses I worked alongside in the hospital and they taught me something I'll never forget. It's been really helpful but may sound a little hard for some people to grasp. They told me that, in order to not "burn out" I have to be able to seperate myself from the patients and have good boundaries. It doesn't mean you can't have fun and be friends with patients, just realise the "possibilities" as early as you can. It's sad, but I just have to accept that some patients won't make it, and be prepared. Sorry, that's not really a nice way to end our discussion. On a lighter side, in the hospital there are so many more happy stories than sad. And we have a lot of fun. There's a lot of laughing going on :)   What is your favourite genre of music?    That's a tricky one, but I've written a lot of electronic music in my life, though I love most genres and songs that have an original element to them. ... View more

And a big thanks to RO and all of those who have been here tonight. I'm blown away by your wisdom. You would all be asked to stay on extra years with Livewire as a Mentor with your wise advice :) Thanks so much for having me. Thanks @gina-RO  ... View more

Thanks for this last question @gina-RO and the person asking it. It's a tough one, but something many people with chronic illness deal with at some time.   I’m sorry to hear about your ill health. Firstly, it’s not your fault. Not one bit. It sounds hugely challenging for you and your family and I won’t suggest for one minute it’s easy or that there’s a formula or something specific that will help. But I can say that I’ve met and worked with many people in similar positions, who felt there was nothing more they could do, or were in such a hard position it was impossible to see any change in the future. But change does come, and I understand it doesn’t come for everyone, but it comes for many and it did come for the patients I’ve just mentioned. I could give you many stories, but I’ll leave you with one.   I worked with a young girl with major head injuries from a car accident, in which she lost all of her family. She spent over a year in hospital, recovering and with originally no hope. After a huge journey, she left hospital, well and being looked after by distant family, and I’ve seen her since, after visiting hospital two years later and she was happy. I’m sorry I can’t give you much more than that but I think there’s always hope and good luck with your journey. ... View more

@scared01 that's a good question. I don't believe there's anything like Livewire for those above 21, though Reach Out and similar organisations are doing fantastic work. Can I get back to you on this question? I'll do some research and let Gina know if I find anything. ... View more

@WheresMySquishy I couldn't have said it better myself :) ... View more

@scared01 that's such a shame you didn't know about Livewire. I agree with you that music can be such a great way to distract from different types of pain   I love this question: What's something you've learnt from working with sick kids?   I've learnt so much from working with patients and Livewire members over the years. I don't know where to start... But I've noticed some amazing things, especially around resilience. I've noticed that the patients that have been in hospital most of their lives seem to have this amazing resilience and social ability. I believe the fact they've had to be prodded by so many doctors, have so many procedures and spend so many days of their life in hospital, usually in a bay with other patients (not so much forcing them to be social, but not allowing them to have privacy), that it has had a profound effect on their ability to take on any sort of problem. I've noticed this mainly with patients who have cystic fibrosis, amongst other illnesses, but CF is the most common. ... View more

Hi @scared01 great to meet you.    Is having chronic low blood pressure an illness?  Is there a way to cope with low blood pressure and other symptoms that follow?   @gina-ROthis is an interesting question. I can't really answer medical questions, but anything that is a medical condition and is ongoing would be a chronic illness. You know, if that question was asked on Livewire.org, I'm sure there would be 10 members who could answer it better than a GP ;)  ... View more

Thanks for the question @gina-RO . I had a long career as a music producer, but the last 7 years I owned a company where we wrote music for ads, tv and film. Funnily enough, I actually did some sound design for a Reach Out video about 10 years ago :) But the work on ads became meaningless, while at the same time we realised our son had mild autism. I became really interested in Autism and child and adolescent development and decided I needed to change my career. A friend was a nurse at the hospital and was in a meeting with Starlight about starting Livewire in hospital and though it would be perfect for me...She was right. That was 2012 and since then I've used a lot of music with patients in the hospital. We made an album over about 3 years, which you can hear on Livewire.org :) ... View more

@WheresMySquishy We try to get around to see everyone in hospital, even those that can't really communicate. We try to find things to do to be able to interact with everyone. I find music is fantastic for this. I have a load of music apps that do all sorts of different things with sound. ... View more

@WheresMySquishy  That's perfect. Distraction is our main tool in hospital, and I suppose you could say Livewire online is a huge distraction machine :)   In the hospital we run loads of projects, in groups or one on one by the bed. Things such as resin jewellery design, tie dye and other t-shirt design, 3D printing, music production, skateboard design and so much more. Online, we have more competitions and trivia but also lots of art ideas. ... View more

This is such an important question @gina-RO as I've noticed many people receive excellent support, but others tell me stories of a lack of support, especially from school friends.   What are some ways to help or support a family member or friend experiencing chronic pain or illness?   I think it can be hard for some young people to understand what others are going through without experiencing it for themselves. I remember being like that, even though I had actually spent some time in hospital when I was 14. The most important thing we can do is stay in touch and ask questions about what's happening in that person's life. If they're family then, of course you will have to give up some of your time (quite a lot probably) to support. Time in hospital can be really tough and the more friends and family the better. But out of hospital can be worse. The best thing you can do is not let go of a friendship and try to understand what your friend is going through. It doesn't take much to make a huge impact, and those simple connections can make a huge difference for a young persons wellbeing and mental health. ... View more

That's so true @ecla34  On Livewire we have quite strict rules about sharing information, but with parents permission, or once members are over 18, they can contact each other outside of Livewire. I've known members to fly across Australia to meet up with friends they've met on Livewire, and because the site is so media-rich, many photos and videos are shared before they get to that point. ... View more

There is a really amazing community developing inside Livewire, and it's evolving all the time as new members arrive and older ones move on. I would highly recommend anyone with chronic health issues who are between 12 and 21 to join. The address is www.Livewire.org.au ... View more

Great question: What kind of impact do you think online communities have for teens living with serious and chronic illness? Do they help people stay connected when they might be unable to attend school etc? Online communities are life savers for certain people. Although everyone takes something positive from the site. We have members with social issues who can't really connect or make conversation when they join, and a year later they are practically running Livewire with us. We have oncology patients who can connect with other oncology patients and generally its a great space to talk about procedures and things that other friends don't understand. The community is really important for members who are in the country also. ... View more

Hi @ecla34, Our chats are totally run by members. The chat room is open from midday to midnight and the chat host is just there to make sure everything runs well. I try to encourage the members to run as much as possible. ... View more

Yes, it's a Starlight program. In the hospitals we run congruently with the Captain Starlight program, but online is all for adolescents, 12-21, unless you become a mentor and you can stay a little longer :) ... View more

Sorry to hear you're not feeling well @mspaceK ... View more

The Livewire site has recently been updated to a modern style and has a number of components, from Groups (Interests) to Articles, Livewire TV (a video section), the Chat Room (We can have multiple live chat rooms open) and the main newsfeed, for access to the most recent posts. We also have a new live-streaming service, so we can live stream games and video from the hospital straight into the site for everyone to take part. ... View more

Sure, well Livewire is actually two programs. I predominantly work In-Hospital with adolescents, at Sydney Children's Hospital, but once a week I am a chat host for Livewire's website, which caters for any adolescent with a chronic illness in Australia or New Zealand, whether they're in or out of hospital. The site also accepts siblings :) ... View more

Hi there. Great to be here! ... View more

Hi @Saltwaterdreamtime happy birthday for Saturday! I hope to get a chance to chat on Friday night. I'm really looking forward to meeting you all and discussing Livewire, amongst other things :) ... View more