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!)
@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.
That sounds amazing @Bart-Livewire! Keep up the good work! 
@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?
@gina-RO My twin has a chronic illness that has a lot of both physical and cognitive symptoms, and because it's a fairly invisible one sometimes people don't always keep that in mind 😞 Beyond just offering practical support for things that might aggravate her physical symptoms, I always try to make sure that i'm always checking in and conscious of how her illness affects her day to day life, because people can really belittle how hard she has to fight to do things they might take for granted 😞
@WheresMySquishy those are really lovely ways of showing your sister support I know my sister was really isolated too, she couldn't really attend school at all for almost a year and friends were checking in less and less as time went on. I agree with @gina-RO there, what @Bart-Livewire said sums it up perfectly. Being there ongoing is so key
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.
@Bart-Livewire That's sad to hear people experiencing a lack of support from school friends - but very true what you've said about it being hard to understand things you haven't been through yourself.
Your suggestion to keep asking lots of questions, and being curious is so important. If we don't understand what someone is going through, trying to understand is a huge part of showing we care.
I've always felt in friendships, that just showing up - is like 90% of the whole thing. People who keep showing up after weeks, months and years mean the world!
You said it perfectly:
"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."
@Bart-Livewirethat's so true! My sister received hardly any support from her school and felt abandoned by her friends during her illness and when she was in hospital. In some of the hospitals she went to, there was hardly anyone she could talk to who would understand what she was going through and were around her age. It was very isolating for her.
I agree with the importance of staying in touch with a friend with a chronic illness!
@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.
@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.
@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.
@Bart-Livewire Those activities sound great! Such a variety too.
It reminds me of a thread we have called
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 🙂
@Bart-Livewire What an amazing career development - thank you for sharing.
That's so cool that you did sound design for ReachOut in the past!! What a small world!
And so cool to hear that you've made an album with Livewire - very keen to check that out.
@Bart-Livewire I've just realised we are about half way through (time-wise), and we have a lot more questions to get through!
Remember that you can ask questions live for anything that comes to mind while we're chatting @ecla34 @WheresMySquishy @mspaceK @mspaceK @Sunflower18
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 😉
I am someone who live with a chronic physical illness so im interested to read more. Ill have a look at the site @gina-RO has linked as well. I actually havent heard of livewire before but I know about starlight (but not a lot). Im unfortunalty outside the age bracket, its a shame I didnt know about it beforehand.
@gina-RO thank you for sharing parts of your story with us. I agree with a lot of what youve said. Dont let your condition stop you from doing what you love
i love music as a way to cope. for me alot of my physical things bring on pain and i find music and also alot of the suggestions that are shared on the distraction thread Gina linked helps not only cope with my mental health but physical as well. Im not sure if its the same for anyone else but i find if im in quite abit of pain (or my conditions have flared up more) my mental health deteriorates and vise versa so its a constant balance.
@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.
@WheresMySquishy that is a beautiful reflection.
I love what you've said about resilience @Bart-Livewire - it is really mind blowing to see the potential of people to survive the things life throws at them.
Thank you @scared01 - it is a very challenging illness, and something i struggle with everyday. The balancing act is real . You've said it perfectly about the good and bad days - the illness is always there, but sometimes it plays up more than others! Couldn't agree more with you - learning that it's absolutely a-okay to not be strong all the time.
I think for me being chronically ill, has taught how to sit with pain and struggle, and not have to fix it. Acceptance is a massive part of being unwell.
I agree @gina-RO! I think acceptance can be really helpful for a lot of people who are chronically ill. Sometimes we need to change our attitude, make adjustments and learn to actively self-manage our conditions rather than wanting the problem to be fixed completely.
Sending respect and love to every person fighting a chronic or serious illness ( and sticking to the adventure time gif theme set by @ecla34 )
While we wait for that one which I know needs more of a considered answer - I am aware that we are coming near the end of our chat, and I think it's a perfect time to ask this next question:
With all the joys and wonderful things you learn and people you get to meet, I can imagine you'd also experience your own share of pain and sadness from the work you do.
How do you look after yourself while doing this work?
And kind of related
What is your favourite genre of music?
For those of you chatting with us, how do you self-care after supporting someone else? AND what's your favourite genre of music?
@gina-ROI try to do something I enjoy after supporting someone else. It's important to take time out to focus on yourself so that you can support other people.
My favourite genre of music is always changing but I like listening to classical music because it's relaxing, as well as upbeat and fast electronic music because it always cheers me up!
Agreed so so important @ecla34 @WheresMySquishy
I forgot to answer it myself!
I often self-care by going for a long walk by myself to think things through, and then doing something fun with friends.
My fav genre of music - could not choose one! But am into electronic/ dance. 🙂
Thanks again everyone! Keep being legends
We are nearly finished for tonight's infobus!
Massive thank you ro @Bart-Livewire for coming online and sharing with us about your career in music, your work with Livewire and Starlight, and your incredible insights into supporting those with chronic illness
Thank you to everyone who has shared and contributed tonight @ecla34 @scared01 @WheresMySquishy @mspaceK
Would love to finish up with the final two questions so we get through all of them!! yay!
How do you look after yourself while doing this work?
And kind of related
What is your favourite genre of music?
For everyone else, would love to wrap on a good self care reflection - it's been a heavy but important discussion tonight
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.
