Having Anna in pain all the time is like made me really helpless and like I can't really do anything about it except to make her smile.
So you might have a brother or a sister.
They might be concerned about you.
It's really important to keep them in the loop with all the talks that you have with your parents and include them in your pain management strategies as well, whether it be getting them to go for a walk around the block with you, if you’re walking your dog or if you’re going to do any relaxation techniques it's important to include them 'cause they might be feeling isolated and that you're getting all the attention so don't forget about them.
To make myself feel better about everything I, like, go to mum, go to my friends, like, play with the dog sometimes. Escape.
Yeah, just don't take it out on her.
Well, if you've got a sibling that is going through pain, like, chronic pain or just normal pain I suggest that you just help them and if they seem in a bad mood then ask what you can do to help and if you can help them, then do whatever you can to help them and maybe you might get some kind of credit from your parents for doing that but mainly just to help your brother or sister.
The main lesson we're trying to teach Bayly as parents is that yes you have this medical condition, yes you have this chronic pain and yes, unfortunately it looks like it's going to be lifelong, but don't let it stop you living your life, don't use it as an excuse and we try to encourage him to just keep going.
If of course he's really debilitated with pain and can't get out of bed then we address that issue at the time but if he's a bit tired and if he's just having a typical childhood moment which we have to decipher as parents of how much of it is play acting, how much of it is real pain and how do we handle the matter accordingly? Yeah we deal with that at home by sort of saying right if you’re too sore to go to school then your too sore to play at home.
That, I think, is the only way to deal with it otherwise eventually he'll start using it as an excuse to get out of school.
I will admit I remember the first time when her hips collapsed, and she… I panicked.
I… I didn't know what to do um… I get frustrated a lot with the system, sometimes, um… but in time when you look back with the frequency of, of things that happen you do keep calm and I found the calmer I was, the calmer she was um… and we just would work through it, you know.
You know, some days are better than others and we just try to get on with it, Yeah… and keep our sense of humour that's, that's the main survival tool… Oh that's… without a sense of humour you'd just be a puddle of tears on the floor, you've gotta keep laughing, you've gotta keep… the chin up, you've gotta give yourself some time to yourself and, you know, you gotta have that family around you and your friends.
Lighten things up as much as you can.
Doesn't have to be all doom and gloom all the time.
Um… they’re still the same person, they're just dealing with crap.
And I learnt very quickly that as long as her mind is on something more positive she's feeling happier so that, and that made all of our lives a lot easier.
So we try to be as happy and positive and fun as we could be.
And it works.
So have a look at the tip sheets together as a family and discuss what strategies are best for you.