Juggling work and MS

Kim: Welcome to the Learn From Me podcast series. I'm Kim Repcak, and today I have the pleasure of interviewing Megan. She's going to share her valuable insight into juggling work and living with MS. Megan's had MS for almost seven years. She's an MS peer support volunteer and thoroughly enjoys supporting people with MS. A warm welcome, Megan.

Megan: Hi, Kim. Thanks for having me. It's a pleasure.

Kim: Great. So, I thought we'd get started. If you don't mind perhaps telling the audience, when did your MS journey start?

Megan: Yeah, of course. So, as you said, it's nearly been seven years. I had just Literally, previously been living over in Slovenia, where my mums from.

So, I was living in the Alps, and I was guiding for mountain biking just having a really well-balanced life. And I came back to Australia because I landed my dream job, but I was still very much in the interview process, which was very, very stressful. And I think that triggered something in me.

So, I started to lose vision in one eye I think originally, I just thought it was a case of needing new contact lenses, but after six months of not having much results from that, we realized there was something a little bit more sinister going on.

Kim: Gee, so that link there with stress is interesting. Many people talk about that stress and then symptoms coming on.

Megan: Yeah. It's really interesting. I think in some ways it was a bit of a relief to finally get the diagnosis because I had been feeling fatigue on and off in periods that were before, that were stressful in life as well. And nobody ever found anything. My bloods looked okay according to the GP.

So, yeah, I think in one way it was a bit of a relief to actually have a label and be able to. To have something to kind of work, work with.

Kim: Absolutely. I'm sure the listeners are really interested. If you don't mind sharing, how does MS. Impact you?

Megan: Of course. So probably aware that MS has different effects on different people.

For me to look at me, you wouldn't know that there's anything wrong with me. My symptoms are for the most part invisible. I struggle quite a lot with fatigue. Firstly, I suppose I have relapsing remittance, so some days are better than others. And I get something that we call cog fog.

So, I get kind of mixed-up thoughts, I suppose, and my cognition sometimes feels a little bit inhibited. I get blurred vision when I'm overheating normally that's when I'm trying to exercise or on hot days as well. They're the main things I think I've had across the seven years little things like shooting electricity up my spine and sort of loss of movement in my hands and things like that, that have kind of come and go. But for the most part, it's mainly the fatigue that I, that I struggle with.

Kim: Thanks for sharing that. And based on that, Megan, are you able to share how you've been able to manage some of these challenges with work? I know for a lot of the listeners, they may be at this very point thinking about how do I juggle my MS symptoms and continue to work?

How do you juggle your symptoms?

Megan: Yeah, definitely. So, at the start, it was really tough because I think I didn't really understand how much fatigue was impacting on me. From my perception, it just felt like I couldn't keep up with people around me and I put myself down a lot for that because I just thought it was because I'm not working harder, hard enough.

So, I suppose what I did in the very early days when I got my diagnosis was just worked harder and travelled more and tried to do more on my bike and almost denied it in a way. And that really drove me into the, the ground. So, the kind of challenges that happened within the workplace when I was working full time in the office.

Things like noise and distractions, inability to concentrate and process information as well. Which is sometimes really hard to articulate to people that don't experience MS. It is, again, quite invisible. And sometimes I feel like I'm sort of complaining about things that normal people really don't have an issue with.

You know, not normal, but people don't usually have an issue. Things like bright lights as well really were feeding into my fatigue. So, I use ways to sort of manage that now and that sensory overwhelm. So, being in an office where there's lots of people, lots of people talking, people talking sort of over you or past you and then being interrupted for different tasks was really, really difficult for me to pull myself back on track.

And also, the fatigue from socialising. I think I'm naturally an introvert anyway, so that's not all to do with MS, but just that extra energy of having to upkeep the conversations and spend my energy on that in the office was, was really difficult. And again, it's. I found it really hard to explain what was going on. Actually, I didn't even understand from the start what was, what was going on until I started to learn a little bit more about the fatigue and, and how I could manage that.

Kim: It's interesting you should say that lots of people talk about having to get their own head around the MS. And then being ready to tell other people that big piece around disclosure is quite a challenging one, isn't it?

Megan: Yeah, it really is. And I think it can go either way and it's a very personal choice.

I decided to disclose just because I have so much cognitive fatigue that I couldn't bear one more thing to hold up as a front. So, I just found it was easier to just be to be open about it and to ask for help. As I started to learn I suppose how to articulate it better. It's definitely become easier as, as I've gone on with, with explaining to friends and, and even in some situations now, I just don't need to explain it at all.

I can just simply say I'm going home but it was that process of sort of trying to understand it for myself before I could decide and can decide where to apply disclosure or not.

Kim: And it sounds like communication is key, particularly when the symptoms you've described most are invisible. So, you might, and I think people hate it when people say, Oh, you look so good. You look fine. But underneath, as you said, the stress of trying to keep up that performance and having the cog fog that people can't see and the fatigue, two big ones, I think that can impact work.

Megan: Yeah, definitely. And I guess that thing about cog fog is I might know what's happening, but I had a good example on the weekend.

We just had a friend's 50th party and I went up there and I had to go home early and even just getting to that point, because I really did want to stay out as long as I could but getting me into that point where I was really tired. I noticed that it was hard for me to find the words and there were some people there that weren't as close. They didn't really know about my MS. And I was challenged in sort of deciding how much to, that I needed to disclose and kind of get myself out there so that I could get out of there so that I could have a rest. So, I think it's something that you don't just solve once and it's done.

It's an ongoing journey with MS and just something that you have to be aware of. And

Kim: Thanks, Megan. So, you've mentioned some of the, you know, overwhelming stimulation of light and heat. What have been some of the other practical strategies that you've employed at work that's helped you?

Megan: Yeah. So, I suppose when I first, not long after I first got diagnosed, I contacted MS Connect because I literally couldn't understand how I could keep working. And I was really devastated because I was only 32 at the time. And I just thought, if this is what my life is going to look like, how on earth am I going to continue with my career?

So, I was reaching out a lifeline, I suppose because I just didn't know who to go to. It's in a pretty dark place and desperate sort of place. The thing that helped the most was initially was actually talking about it and talking about it with my OT at the time who could understand what I was going through and actually put a name to a lot of things like fatigue, which is different to normal being tired that helped me start to understand what was going on with my body. Because I suppose before that I would just drink more coffee or I would try to take stimulants to just try to help me get through my days.

And of course, that was contributing to it being worse and really learning and sort of fleshing out what I was contributing to my fatigue was a really helpful part of the process. Learning management strategies around fatigue. So, there's plenty of things like pacing myself removing some of those stimuli where I can.

At the moment, I'm really fortunate to still be working from home. So, initially ESS came in and helped me have I guess they're advocate to help me have the conversation with my job to just do one day working from home. And very soon we realized that actually I was a really high performer, but it was just these small external factors that were making it really difficult for me to work.

So, I started to fight for working from home. More often, and that really helped not only working from home but that cut down the one hour travel to and from the office as well in peak hour traffic. So, I found I didn't realize, but it was really taking from my finite box of energy, I suppose that I have each day to drive there and then to get back at the end of the day. I was just coming back with no energy to be able to cook a healthy meal or a meal at all.

And just feeling like my whole life was just, just getting through my five day work week. So, we learned lots of management strategies which are put in place. So, things like pacing and being aware of the symptoms early on of fatigue, resting when needed, you know, listening to my body.

They also helped with some ergonomic solutions as well. Such as a sit down stand up desk. And I have a mat that reduces fatigue, and my chair helps in reducing fatigue as well. So, it really sort of helped me be more efficient at my desk and feel more comfortable and wipe out all those things that could be causing fatigue on top of that.

Kim: That sounds amazing, it sounds incredible. It sounds like you worked in real partnership with the occupational therapist at employment support. And it sounds like there's a range of things that went on there, some advocacy around what you needed and some education around self care. And I think overall, would you say they sort of helped you to develop some work life balance?

Megan: Oh, 100%. Honestly, when I tell the story to friends I felt like, I feel like I wouldn't still be working without their help. I think I would have just driven myself to the ground not realizing what was going on. And yeah, now I'm down to four days but I don't see that as a failure. I am actually the highest performing employee in our sales team.

I work from home, but I still function well and I go into the office on a need to basis. And yeah, it's been fantastic.

Kim: And how long have you had ESS involvement?

Megan: So, I think I engaged about six months in from my diagnosis, and then I was using their services for a good four to four and a half years, I think.

I still use all the supports that I've been given, but since that time, my funding's actually transferred over to the NDIS. So, I didn't need the ESS anymore, but I've still got all the equipment, obviously, and I use all the strategies that I learnt. The NDIS, because I've been fortunate to put my plan on self-managed, I've been able to use things like psychology to also continue to work on those kind of things like resilience that are really important as an ongoing way to manage my daily MS as well, because things can change.

As I mentioned before, I might be having a good day and then the next day I might be faced with some things that I haven't seen before. So that resilience kind of helps me to just view it as overcoming a hurdle rather than being dropped down.

Kim: Yeah, no, that sounds amazing. So, you've moved forward in getting some. NDIS funding, and as you said, engaging with a psychologist and that big, big hurdle around, you know, picking yourself up again. Resilience is so important. As far as mental health goes and looking after that side of you, which is so important. I'd say equally important as the practical strategies.

There are any other tips you've got for the listeners around keeping strong mentally and again, being resilient and being able to pick yourself up again?

Megan: Yeah, definitely. I think things like meditation and mindfulness, we hear it all the time and sort of just take it for granted as we'll do that when we have time. But they have been integral to me finding that nice stability in terms of my mental health and I think without our mental health, we are not able to implement the strategies that are really helpful for managing our MS well. Like healthy diet and enough sunshine and exercise and things like that. But without the platform of a strong mind, you're not going to keep any of those practices going. So yeah, I would highly recommend meditation.

It helps me zone out, especially if it's been a stressful day and it helps me to. Bring myself back down to the moment because anyone who's had MS for a little while probably gets that same feeling like when we go for an MRI. It's that feeling of dread, what are they going to see this time and I find it especially helpful even just in my appointments to bring myself back down to what I can control and remind myself that right now I'm okay and I've got the tools and support system to work through anything that comes my way.

Kim: Mm, that's fantastic. It sounds like it's really helped you to, whatever hurdle comes up, you know, you've got the skills and all those healthy habits to get you through.

Megan: Yep, definitely. And it's not to say that that it's easy. There are still times for myself and I'm sure for all of us that it feels, life feels really, really hard.

And you look at other people and think, oh, wow, it looks like they could just do it so much easier without MS. But I think the point is, is that. Everyone's got their thing that they have to deal with and you know we can move forward. There's a lot of support with MS and a lot of research and we've got the tools.

We just have to take it one little step at a time.

Kim: Absolutely. So, you're a peer, and I know I've referred lots of people that are working that ring in MS. Connect and say, look, since my diagnosis, I'm really not sure how I'm going to continue to work. And I've referred them to you for one-to-one phone support.

And the feedback we get is fantastic. They often feel very reassured. But from the flip side, what's it like for you being a peer supporting people who might be worried about their future?

Megan: Thanks, Kim. I think I get just as much out of it as the person on the other end of the phone. I think I learn a lot through sharing and about myself and about my experiences.

It's an opportunity to reflect on what I've done that's right and that has worked. MS is a really individual condition and things and diets and that sort of thing that we do can affect people in different ways, positively or negatively. And I think that understanding that we have a community of support and that we're not alone is a big thing.

And I, I feel that as well when I'm giving help. I know that in my early days it was really helpful for me to have a peer group to talk to. Because it made me feel like I am not alone and just that feeling of being understood is really, really important as well.

Kim: Absolutely. Yeah, absolutely.

Being in a group of like minded people and know you're not going mad that those fatigue symptoms and the cog fog are very real and to share tips and strategies. I know you were instrumental in helping me set up the city group for people working with MS, which we're relaunching very soon. So hopefully we'll get lots of people in the city connecting for a drink after work or a meal, which will be great.

Lastly, I just wanted to. Ask you if you don't mind thinking about what you'd say to someone who's newly diagnosed and fearful about their job and about their future. What would be your key message for that person?

Megan: Sure. I would honestly say don't worry. It's a total waste of energy and it'll only exacerbate your symptoms. Worrying hasn't ever done anything good for controlling an outcome. And I would say, instead, use that energy to be kind to yourself and to try to take one step at a time. Whatever that step might be for you, start with the things that will actually help you feel better and to get well, like what we were talking about, that mental health thing.

And then from that place, from a stronger place, you can make decisions about your work. In my opinion, work can wait but really your health cannot.

Kim: Fantastic. Thanks so much, Megan. Some awesome messages there. So, I'd just like to prompt anyone out there that's listening, that feels that they'd like support.

Don't be a stranger. Please ring MS Connect on 1 800 042 138. There are people like Megan that can link in with you and chat to you and share their experience and support. There are groups we have also that you can connect with other working people. And also, as Megan's mentioned, very important services like the employment support team that you can link in with, as well as getting information on the NDIS.

Lots of tips and tricks around how to live well, work well, and most importantly, enjoy life with MS. So, thanks again Megan wish you all the best and thanks again for all the wonderful support you provide to other people with MS.

Megan: Thanks Kim. All the best.

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