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!)
Boundaries are so important. As is fun. Fun is key in sustaining meaningful work (and lives!).
On that note, go get some self-care for your friday night!
Going off gif theme here but :
I was the one who asked about the low blood pressure bit... heheh... 😅😓😖
I think I will have a look at the LiveWire and Starlight things! It does sound pretty cool.....😊
@gina-RO it's been a fun one!
i agree that when supporting anyone for any reason, taking time for self-care afterwards is really important! Personally I like to take some still time, just to reflect and sit in a peaceful moment.
As for music genre...
rock and metal all the way! 😄
@scared01 I can relate to your experiences! My sister has noticed that when she's feeling depressed, her pain is worse and vice versa. I also experience chronic pain and I believe that psychology and mental state have a lot to do with it. For example, when I am stressed, my muscles tense and it makes my pain worse. There is a 'gate control' theory of pain which suggests that people who are more anxious or sad experience more pain because this makes the brain amplify the transmission of pain signals. I think this is why distraction is so useful.
something else that perhaps needs to be meantioned is that pain is real. whether its physical or mental caused it is real.
Great question @scared01 , and thank you so much for sharing .
I also find that distractions for both mental and physical distress are often the same.
The link between pain and mental health is HUGE. I know even from short times of pain - like having wisdom teeth removed, back injury etc - just how massively mood is impacted by pain.
It must be so tough dealing with pain and the impact it has on mood, over a long period of time. 
You deserve a medal for that balancing act.
Living with a chronic health condition is really tough. It can take a huge toll on your mental health, for some people to the point of feeling like life loses meaning. If you experience a chronic health condition it is so important to get support for your mental health as well as your physical health. You can also access support 24/7 from one of these services if you ever need support for strong feelings, or thoughts- particularly if you have thoughts of ending your life.
@Bart-Livewire we had a question come through with some details about someone's personal experience with chronic illness. It came from someone who has been diagnosed with Complex Regional Pain Syndrome (CRPS) as well as Functional Neurological Disorder (FND), and is having thoughts of ending their life.
I have posted the question in full over here to get community support.
If the person who submitted the question is reading this, please go to the other thread for support, and we also recommend calling Suicide Call Back service on 1300 659 467, to chat these thoughts through in depth. Trigger warning for others in this chat re the full question.
As Bart is not able to hear more about your experience and have a 1:1 conversation with you, it is really important that you get this over the phone, or in person from a psychologist or counsellor.
Bart has seen the question in full - would you like to give a brief answer?
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.
Incredible story, thank you Bart. To see hope even in such an awful situation is amazing.
I've been absolutely blown away with what you've shared with us tonight @Bart-Livewire ! The work you do with Livewire is so important and so wonderful, and i'm really grateful for the opportunity to have learned more about what you guys do
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
Thanks for doing this special discussion with us @Bart-Livewire! 
i can imagine having type 1 diabetes would be quite tricky to manage at times, i know someone im close to has type 2 that i help manage but that doesnt require insulin etc. huge kudos to you for managing like you are.
it is a constant balancing act, one im still very much learning but compared to even when i first joined here almost 3 yrs ago (crazy right!) but its not a race nor is it a straight line to recovery either.
something that ive learnt from having different illnessess (both mental and physical) is that its ok to have bad days. as humans we are pretty damn strong however we dont have to be strong all the time and its more than ok to reach out for help for whatever your dealing with.
@Bart-Livewire I can only imagine the medical expertise you'd have in the room (or the chat room..) from everyone's lived experiences!
That is an interesting question, and if the person who submitted it is reading, please check that out with a GP. You could also have a think about whether the Livewire community is a place you could go to for mutual support.
We had a great question come through:
What's something you've learnt from working with sick kids?
I'm wondering if others in the chat want to reflect on something that sickness, either yours or someone you love, may have taught you?
im wondering if there is a community that your aware of like livewire for those outside the age bracket?
@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.
yes RO is pretty amazing
Sickness has taught my family and I to appreciate the simple pleasures of life. It has also taught us to put things in perspective, especially problems. We are able to shake off the small issues and not take things for granted. It has also taught us the importance of having good social support. In some ways, it has made us closer as a family because it has encouraged us to work together and communicate more. I have also learned that there are both helpful and unhelpful ways of coping with a chronic illness and perceiving the experience.
