Learn from me: being a mum with MS

Kim: Welcome to the Learn From Me podcast series. I'm Kim Repcak and today we have the pleasure of talking to Melissa who's a busy mum who has MS. Parenting can be a challenge as we try and juggle everyone's needs. Adding the diagnosis of MS can often amplify this. Melissa has provided many hours of support to other mums with MS, sharing her valuable tips and tricks on how to be a happy mum and manage MS. Welcome, Melissa.

Melissa: Thanks, Kim. It's good to be here.

Kim: It's great to have you. I'm sure there's lots of mums eagerly listening away to hear your experience. I know, Melissa, you've had MS for over 15 years, so you've got lots of lived experience that you can share with others, which is fantastic. So, we’ll open up with, what would you say to our listener who is a mum and has been diagnosed with MS?

Melissa: Okay, so the first thing I would say Kim, is don't panic. It's going to be okay. I guess it's going to depend on whether you have young children or older children, but I think what I found is that it doesn't really matter what stage you're at with your MS, you can always just be a mum. It's easy to just be a mum, no matter what.

Kim: That's a really positive message. I guess to help sort of us understand your situation, Melissa, can you share perhaps when you were diagnosed and then perhaps when you had Jack?

Melissa: Yeah, sure. When I was diagnosed obviously I was in my thirties, early thirties, and it was actually in hindsight, it was a blessing because the neurologist said, you should have a baby right now.

You should have a baby, which was like such a kickstart for me to get started, but it was a little bit scary because I was newly diagnosed and then got pregnant within a couple of months and had a baby. It's a little bit scary but you know, it ended up being fine. It was fine.

Kim: That's a great message because I think there's lots of people diagnosed with MS that think, should I have a baby? What to do? But your message is you can have a baby and have MS. And that you can certainly live well with MS and enjoy being a mom with a bub.

Melissa: Definitely. So, I've done the full gamut now because he's 15 now, and so I've done the whole gamut from baby to teenager with MS.

Kim: And that's why I've handpicked you, Melissa, because I thought that you could perhaps share some tips from baby to teen. I guess the first question that a lot of people have is around, you know, what are some of the challenges that you've faced and how have you managed those as a parent with MS?

Melissa: I think the biggest challenge, and this is going to be just as a mum, regardless of MS, is being tired because you are tired when you're a mum. But you know, it's just common sense. And I think everybody gets told this when they have a baby, get lots of rest, sleep when the baby sleeps, you know, get help if you need help, ask for help, accept help.

Yeah, just rest and don't pressure yourself to get the house clean and do all that sort of stuff. Just don't, spend time with your baby, cuddle, play, laughing and cuddling. That's all the babies are going to remember. That's all the kids really remember about those early days. It's just love.

Kim: I wonder Melissa, if that's actually what helped you in changing your perspective, that you really made the most of those times and didn't sweat the small stuff as much?

Melissa: Yes. It was very convenient to avoid doing housework. That's for sure. But you know, you've got to just take the time for yourself. Like, think about what's really important, what needs to be done and what's important to you and keeping you well.

You know, you can't keep your baby healthy and happy if you're not healthy and happy. So, look after yourself and everything else will come.

Kim: A part of looking after yourself as a mum with MS, what are some tips there? You mentioned the importance of rest and getting good sleep. What other things have helped you in juggling being a mum and MS?

Melissa: Well, you've got to, you know, you do have to accept help sometimes. I think it's hard for a lot of mums and especially a lot of modern day women accepting help when you're tired or stressed or whatever. You just need the support, the help. I used a lot of friends that I made, you know, so the mums group at the start. Then the kinder mums and then the other mums at school. I still have coffees with the mums that I met when Jack was in prep. We still have weekly coffees and stuff. And just, you know you need to just take time for yourself. Yeah, make time for yourself.

Kim: And not be afraid of reaching out and asking for support as you need it.

Melissa: Exactly.

Kim: Another really big question that pops up, Melissa, is around telling your children about your MS. Lots of people ask that question. Should I tell my child? What will they think? Am I going to frighten them? What are your thoughts and experiences on that?

Melissa: I think that question is definitely one you know, every family is different.

Every child is different and every person with MS is different, and you need to work out for yourself what's going to work for your family. I think that the amount like personally for me, I started talking to my son about it when he was quite young because I was needing to use medication and he saw me using it.

And also, when you're tired, you know, why are you so tired and why are you in bed? So they're aware of it from a pretty early age. And I think you just need to talk to them, talk to them honestly. And just keep it low key, keep it relaxed. You know, if they're asking you why you're tired or why you're taking that medication, you can just say something simple like, you know, it just helps to keep me stay well, like vitamins keep people well, something like that.

And then as they get older, you can build on the information you give them.

Kim: So it needs to be, it sounds like pitched at their level, their level of understanding and their maturity for the child. And I imagine that would vary.

Melissa: That definitely would vary with the child and, you know, as they get older and then what experiences they have and what they're learning through other people that they know.

And you have to just feel it out with your kids. You know, moms will know what they're able to understand and you've just got to keep it low key and you don't want to stress them or upset them and you don't want to talk about it when you're stressed and upset because, you know, that's not going to make it easy for them to understand and probably frighten them possibly.

So, yeah, you just want to talk to them about it if they're asking or if you're feeling like you need to explain but you want to keep it down at their level and just relaxed and conversational.

Kim: And it sounds like you do it as they need the information, so if they ask a question, it might be a symptom that you're showing, and they ask you why you're so tired.

So, pitch it at the time when they're ready for the information.

Melissa: I think so. I think if you don't want to overwhelm them with information that they don't necessarily need yet or that they can process yet. You know, they're just kids. They just want everyone to be happy and healthy so they don't, you know, you just want to keep it calm and just if they're asking, if they're interested, you can add to it.

There's probably resources even that you can help use to help you explain things like that, illnesses to your kids. Just not frighten them but if they're showing interest, you don't want them to get the wrong information or anything.

Kim: Absolutely. And there are lots of different handouts you can get from the MS website on parenting, as well as a really good webinar, if anyone's listening on talking to your kids which is highlighting everything you've said, Melissa.

So, you've touched on the importance of making sure that you rest. Explaining to your children what's happening for you, the timing of that. I guess the other area that I thought was really important to talk about is the changes that may come with MS and the impact they might have on your child as they see you perhaps have a relapse or a new symptom.

Have you experienced that with Jack?

Melissa: I have experienced early on, actually, I had quite an active disease but these days it's much more under control and I don't have to worry about it. But I have had instances where, for example, I got some muscle weakness in my arms and I couldn't chop veggies or things like that for dinner.

I just got my mother in law to move in temporarily to help out with some stuff you know, preparation and things like that. They see it, they see that you can't do it, but I just used to explain that this is just temporary. It's just going to get better. Just need to rest and wait for this medication to work.

And, you know, then I'll be back to normal, everything will be fine. And then they actually witnessed that happening. You know, my mother in law moved out, everything went back to normal and they forget about it. The kids just move on and he forgets. Yeah, it's not long lasting at all.

Kim: So, it sounds like you're normalizing MS.

You're helping Jack to see it as coming and going, the symptoms come and go. And the message you're giving is that the medication and what I'm doing will help me to go back to well again. Is that what you're saying, Melissa?

Melissa: Yeah, that's right. I mean, they see that things go badly, but it's very important also to make sure that they see that then it all goes back to normal, that you're fine again, you're well, it's not long lasting effects.

And, you know, you're just getting on with your day to day back to normal.

Kim: I guess what's important here is to highlight for the listeners that the form of MS that you have, Melissa, is the relapsing remitting MS. Is that correct?

Melissa: That's right.

Kim: So you've got periods where you have a relapse and then you're going back and it's that relapsing remitting type, which might be different for some other listeners.

That's why I think it's really important just to say that so coping with change. It sounds like. You're really helping Jack from toddlerhood now to teen and it sounds like while you've got your head around it, you're showing him a really positive role model, a mum that is living well with MS.

What impact do you think it's had on Jack as a teen now, having a mum with MS?

Melissa: I actually think for both of us, it's been quite a positive thing. I know that sounds a little odd, but it just teaches both of us resilience because we just have to. We realize now that things can go wrong or that things aren't perfect. But you just keep at it, keep going and it'll go back to normal. You'll get the outcomes that you desire. So it gives for me, it's helped me to just move on, try new experiences, don't worry about when things go wrong because. I've got that experience that just comes good again.

And for Jack, he's become so independent. Like, it's amazing. In fact, I said I wanted my partner to cook us dinner tonight and he said he had a meeting. And so my son, my 15 year old son said, well I'll cook dinner then. That's fine. You know that's the kind of thing that. You know, it's really positive.

That's the kind of thing you want your kids to be. Independent, strong good copers, resilient.

Kim: I'm amazed at all the events I'm lucky enough to attend the camps, science works, all the different things we do with families. Often, I see exactly what you're saying and that is kids helping mum and dad.

Very resourceful, very resilient, very responsive kids. And I think they've learned that as Jack has. He's learned on your bad days to be a helper. And he's also learned to have empathy. Do you see that in Jack, the empathy?

Melissa: I definitely see that in Jack. He he's become such an empathetic and caring child. One of his friends recently was diagnosed with diabetes and he wanted to understand what she was going through. So he gave up refined sugar for three months just to get an understanding of what it was like for her. And I think that's the kind of, you can't teach that, you know, kids have to learn it and experience it.

And the fact that he's come to it so quickly, and it's I guess, because of the way he's had to help me it's amazing. It's turned him into a really caring, loving, empathetic child.

Kim: That's fantastic. So, and resilient because you've had some ups and downs and he's watched you get back up again.

But not only that, he's helped you get back up again.

Melissa: That's right and he still does. And he inspires me. I changed careers and he inspired me to try new things and go for different, different jobs, different careers, different career paths. And he just sticks at it and he helps me to stick at it and now I work in a very different career, which is, it's been wonderful for me.

Kim: Melissa, you've moved from radiology to being an integration aid. Would that be right?

Melissa: From a scientist to integration aid. Yeah. At a primary school.

Kim: So you've juggled career changes as well amongst all this.

Melissa: Yeah and you know it's, you can't let the, you know, the MS really impact on it.

You know, what I think the thing with MS has actually helped me in terms of the career I have now. It has a much better work life balance. I'm so much happier in my career now. I probably would still be in science working hard, stressing out if it hadn't been for MS. So I would say that with MS I'm a much happier person. If I'm honest.

Kim: And this work you're in now what's different about it that helps you juggle things?

Melissa: Well, I get to work with kids and kids are inspirational. Like they just make me smile every day and laugh and yeah, I'm back in touch with my inner child, spend a lot of time playing kids games with them and they are resilient.

They are amazing. Like you just every day just blown away by. How they get knocked down and get back up. And you just think, well, if they can do it, anyone can do it.

Kim: It sounds like you're really enjoying life, Melissa.

Melissa: Yeah, I'm very happy.

Kim: So you've been such a help to us in peer support. You've spoken to, I'd say over 50 mums in over 10 years, I guess, going on for 13 years of peer support.

Are there any common sort of themes that come through? Are there any sort of scenarios you can think of that listeners might be interested in hearing about?

Melissa: I think a lot of, you know, a lot of people wouldn't, I think when you've been first diagnosed, you know, they worry about whether they're going to be the mum that they thought they would have been before the diagnosis. Just worrying about whether they would you know, have enough time or enough energy to keep up with their kids. Which was one of the things I talk about with the peers. But overall, you'll find that you, I just work out, you just get a balance, you know, if you are thinking of activities, always have a few activities in the back of your mind.

Whether you're feeling active and happy or if you're a bit tired so that you can keep the child happy, excited, interesting without needing to let them know really what's going on with you. But also a lot of the mums are worried about work and going back to work and you just have to prepare, be prepared. just get a good balance, I think.

Kim: So, planning and preparation.

Melissa: Yeah, that's it. That's it.

Kim: That reassurance that you can go back to work, but you might need to adjust a few things.

Melissa: Yeah, that's right. Just be, just prepare, be prepared, plan. And that's the same with, you know, even with children, when they're growing, when they're getting older, you just need to be prepared for whatever.

For whatever happens with you, with your MS, but you know, just what the child will want to do. I think any mum needs to know how to be flexible, right? Because kids will change their minds about things 15 times a day. And so just be prepared, be flexible, be prepared.

Kim: And that goes back to your message around your children learning to adapt and flex with the changes that may happen with MS.

They're learning to do that as you show them the different ways of being flexible and maybe it is accepting extra help from family, friends, or other supports such as NDIS and other programs that mums can link into.

Melissa: Definitely. Just, be prepared. Isn't that what they say? Just be prepared for everything.

Kim: So I guess in closing, Melissa, what might be your three key messages for mums with MS? Are there three particular messages you'd like to get across?

Melissa: Well, the first one is relax. Just relax. Take care of yourself. You know don't stress. I think kids pick up on stress. If you're stressed, they can pick up on it.

And we seem to stress a lot about things that actually aren't that important, like housework. That might be me personally, but honestly housework is not worth stressing about.

Kim: Yes, indeed.

Melissa: Yep. Relax. And when you're organized it really helps to keep your stress levels down, you know, be organized, make lists. I'm such a list maker now.

And then probably the second thing I would say is be kind to yourself. Just be kind to yourself. Look after yourself. Just don't let yourself get overtired and overworked. Just take a step back, relax, spend time with your kids.

And just, thirdly, just laugh. Be happy. Just be happy.

Yeah, enjoy your kids. Enjoy your life and your family. Just, yeah, that's really all we want, right?

Kim: Absolutely, but it sounds like MS has perhaps changed your perspective on that, Melissa. You really are looking at the important things in life and not sweating the small stuff.

Melissa: 100 percent and I'm so much happier for it.

Yeah, just I want to just take that step back, breathe. Do stuff with the family, just go for walks, go for you know, go to the movies, just relax.

Kim: Absolutely. I think one of the messages I'd like to come out of this podcast in learning from you, Melissa, is to reach out for support. How important is it if you're a mom listening today and you're really struggling, how important is it to put your hand up, ring MS Connect and get some help, get some support?

Melissa: It's so important. Like you've just said, it's really hard. I think a lot of mums particularly think that they have to be superheroes, supermums, and do everything. It's crazy. You know, you just, sometimes you just need to talk to someone, you know, reach out, talk to people whether it be through MS or just coffee with friends or family, partners, but yeah, just, or something more formal even, but you need to talk to people.

We can't do it all by ourselves. It's too hard.

Kim: That's such a good message. So thank you so much for joining us today, for all your key messages, Melissa. Really appreciate it.

If anyone's listening and they'd like to talk to someone like Melissa, we have peers that can talk to you, people that are mums with MS that can relate to what you're going through.

So please call MS Connect on 1 800 042138. We also have a fabulous Mom's tele group that you can link into. So don't be a stranger. If you need support, please reach out. Thanks everybody. I'd also like to shout out to Darcy and his team at Pro Podcast Productions for their support in producing this podcast.

Thanks everyone. Bye for now.