Friday 3rd May: Live guest Bart from Livewire
INFOBUS is back! May 2019...
On Friday the 3rd of May 7-9pm we will be having an Infobus! If this is your first time hearing about an infobus, go here to learn about what they are!
Our guest will be Bart from Livewire.
Livewire is an online place for teens living with a serious or chronic illness to share stories, laugh, have a vent.. And go somewhere where they will be understood.
Bart will be chatting all things chronic illness, how to get support and how to cope with the daily struggle illness can bring.
If you have any questions for Bart submit them below, and we will ask Bart on the day ( depending on how many we get!)
Hey @scared01 no worries! So glad you could make it 
If you wanna jump in, feel free to answer some of the questions about your own experience to this topic (chronic illness .. as well as music) - if you'd like to 🙂
We had two specific questions come through about blood pressure that we'd love to hear from you from @Bart-Livewire :
Is having chronic low blood pressure an illness?
Is there a way to cope with low blood pressure and other symptoms that follow?
@gina-RO I like to listen to upbeat music when I'm in a bad mood because it cheers me up. My sister likes to sing to take her mind off her symptoms.
@WheresMySquishy Upbeat music makes a lot of sense for when you're feeling low. That's awesome your sister likes to sing as a distraction 
@ecla34 thank you for sharing that about your twin sister's experience - you sound like an amazing support for her. Having an invisible illness can be so challenging - especially when people are belittling of the very real pains and difficulties of that illness.
@Bart-Livewire that's a really interesting intersection between your different careers! Music really is so good at connecting people, it transcends language! 😄
I think music can be really useful for connecting with people with disabilities or chronic conditions who are experiencing isolation. I have seen this in some of the volunteering work I have done.
@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 sweet thanks
Have others heard of Livewire? Or the hospital program - it's Starlight right Bart?
You can get it out on their website over here if you want to know a bit more 
And no worries @mspaceK , really glad you're here 🙂 Take it as easy as you need.
@Bart-Livewire Awesome - I love that the members run the chats primarily.
I want to mention that we have a lot of people in the RO community who experience ongoing serious or chronic illness- both physical and mental, and will probably relate to the people you work with.
I also have a chronic illness - Type 1 diabetes, and know from my experience just how hard it can be to juggle life, with complex health care needs - having a safe space where people understand, must be really valuable for people.
@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
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.
I agree @gina-RO! It's really important to have social support and understanding when you or someone you know has a chronic illness.
sure what I’m doing
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 🙂
I'll just use my data, and try to answer when I can!
I did already ask a question in the box anyway..........
