Journeying through Sepsis: Support during rehabilitation

Transcript

Amy Wilkinson: The sepsis journey is a very emotional one, like any illness. But it's a journey I've been on, so, and it was so sudden, there's, it's just a roller coaster.

Alana English: The first thing to remember is that it's a marathon, not a sprint. So being in hospital for a lengthy period of time, you need to develop some strategies to sustain yourself and the rest of your family over a lengthy period of time.

And so it's really important to maintain your own self care during that time. Now lots of families when I talk about self care will say that I'm being a bit hippy or a bit strange or, but really that's a really essential part of looking after yourself. And I like to explain to families that, because they can often relate to it, most of us have been on a plane, and on a plane they give you the safety instruction at the beginning of the flight, that in the case of an emergency, an oxygen mask will fall from above, and you need to ensure that as a parent you fit that oxygen mask to yourself before you fit it to your child. The reality of that is, if you don't, potentially you pass out before you're able to fit it to your child. It's the same analogy here, and you really have to think about it like this. If you don't look after yourself while your child is in hospital, you are not capable of looking after your child.

The other thing about when you come to the rehab phase is that often people find that emotions are significantly heightened and they potentially find this strange. I've had a lot of families talk to me about the fact that they actually feel like they're going a bit crazy because they become more distressed and more worried when their child's on the ward and concerned that potentially it is a strange reaction to have when their child's actually starting to feel better. I'd like to explain to parents that it's actually an understandable reaction because of the abating of that crisis response. You actually have a reaction within your body where all the emotions that you've potentially been storing up for a number of weeks while your child's been in the ICU is now actually currently being experienced. And it's okay to feel those feelings and to have an opportunity to process them.

Some strategies that I would suggest to parents and families in terms of managing their own self care. Firstly, the basics. It's managing eating, sleeping, exercising, and all of these things like I fully acknowledge that when your child's been very unwell and in hospital, you don't want to think about prioritising your own self care and your own needs, but it's really, really important to maintain these basics.

It's a difficult environment to sleep in. It's difficult to get a full night's sleep. So I'd strongly encourage families where you can try and take turns with another family member to either sleep in local accommodation or to go home every other night. So that you actually get a decent night's sleep.

And to exercise. Whilst parents think that they don't want to leave their child's bedside for even five minutes, I can guarantee you that if you were to leave the room, walk outside for ten minutes of fresh air, the rest of the day will pan out so much better for both of you.

Tiffany Ritchie: During the rehab phase, when we were in the ward, it was really important for me to keep active given that I lead an active lifestyle, so does his father. So we made sure that we went for walks to get fresh air. We'd walk around Kangaroo Point up to the stairs and back, just even if it was for a 15 minute, 20 minute walk, just to get out to clear your head. Mind never leaves your child, but you are just taking a breath, just to refocus. And for me in my normal life, that's so important. But especially when Austin was in ward and recovering, it was really important to get out and do something for me to make sure that I still felt a bit in touch with normality.

Alana English: I would also suggest that you talk to whoever you need to talk to, and different people vary in terms of how much they need to do this. So if you're not a talker, then don't feel like you have to, but if you are a person who processes emotions and processes the stress of the day through talking to others, then seek out the right people.

That might be a trusted family member or friend. That might be the social worker on the team. It might be the chaplain from the hospital. Determine who's the best person for you and seek that person out. Continue to try and talk to your partner as much as you can, even though at this point in time you might both be feeling incredibly stressed. It's important to share your experiences so that you both understand where you're at.

Sabella Ryan: Originally I didn't like talking to a psychologist. I hated it and like pretend I was sleeping in like I C U so they wouldn't come and annoy me. But once I like left I C U and I was kind of discharged from the hospital, I did enjoy talking to my psychologist. And yeah, I do think it helped get over like that stage a little bit.

Amy Wilkinson: I don't think I found it weird reaching out. I just needed to. I just need it. And then, and then you reach out to a few, maybe a few different people. Finding those people who, you know, you go, you get me.

Sabella Ryan: So it's really important to stay in touch with your friends at hospital. I had some really good friends back here and like, obviously they wanted me to come back and play sport with them. So I guess like, just reminding myself that I was working towards a goal. So, yeah, that, like, encouraged me to keep going when it was really hard.

Alana English: Some other strategies that I would suggest is to think about what it is that usually would fill your cup. What's the thing that actually gives you some joy, makes you feel better in the day to day when you're not experiencing what you're experiencing here in the hospital, and then try and incorporate that into your daily routine.

Often for some parents who potentially are runners, they'll think, well, I can't possibly be going for a run. But go for a 10 minute run. Doesn't have to be a long one. Go for a 10 minute run. You will feel better afterwards. Throw on some music. Dance in the room. Sing out loud. Get into the shower. Sing out loud. If you want to get into the shower and have a little scream, if you need to. If that's what you need to do.

Whatever it is that helps you to release those emotions is the best thing to be doing at that point in time. If you can, read three pages of a book that you've always enjoyed. You know, a book that you've read before. Bring that book in. Read that book over because those three pages and that 10 minutes of reading will help to sustain you.