Friday 3rd May: Live guest Bart from Livewire

[Bart-Livewire]

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

[ecla34]

@Bart-Livewire  it must be so rewarding and encouraging to see that kind of growth in confidence in users and their comfort with the service
I really love organisations like RO and Livewire because they have that potential to reach people all over Australia and connect them with others going through similar things, even in really remote rural areas, there's so much potential for a really powerful impact

[WheresMySquishy]

That sounds amazing @Bart-Livewire! Keep up the good work!

[gina-RO]

@Bart-Livewire That's incredible to hear the journey that your members go on, and the growth they experience while with Livewire. 

What a great way to connect with people living in rural areas as well. 

The internet is an amazing tool.

[Bart-Livewire]

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.

[gina-RO]

@WheresMySquishy  and so very true. Social support and understanding is key 

@Bart-Livewire  It sounds like you work with people experiencing a whole spectrum of situations - whether people have an illness themselves, or are family to someone with an illness. 

Which brings me to our next question:

What are some ways to help or support a family member or friend experiencing chronic pain or illness?

And I'm interested to hear from those chatting too, if you have a chronic illness, or a family member or friend with a chronic illness - what is a way you offer or receive support? 

[WheresMySquishy]

@gina-RO  My sister is currently going through some chronic conditions. Distraction, such as doing activities she likes, really helps take her mind off her pain. We try to stay optimistic. She spends almost all day in her room because she can't move around much so we make sure that we always talk to her and try to include her as much as we can. We also try to make her physiotherapy exercises fun, like doing them together, and we try to explain as much as we can to her about her conditions and share self-help resources with her.

[Bart-Livewire]

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.

[gina-RO]

@WheresMySquishy thank you for sharing your experience with your sister - it sounds like a really tough situation for her.  Having the support of you and the rest of the family is so important. Distraction is a great way to help with pain - do you find this is helpful for the people you work with @Bart-Livewire ? 

I know for my condition, I really appreciate having people understand that there is still life with sickness. When there isn't a cure, or a quick solution, life needs to continue in some way. Doing fun activities with others, is a great way to do that. 

[Bart-Livewire]

@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.