Friday 3rd May: Live guest Bart from Livewire

[WheresMySquishy]

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.

[scared01]

@Bart-Livewire
im wondering if there is a community that your aware of like livewire for those outside the age bracket?

[ecla34]

good question @scared01!

[scared01]

@WheresMySquishy i love your latest response

[gina-RO]

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. 

[WheresMySquishy]

@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.

[Bart-Livewire]

@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.

[scared01]

thanks @gina-RO
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]

@WheresMySquishy I couldn't have said it better myself

[scared01]

love your example @WheresMySquishy. i agree the more stressed the more i tense up etc as well which causes pain.

something else that perhaps needs to be meantioned is that pain is real. whether its physical or mental caused it is real.