Thriving with Migraine - Simone Dow - Voyager

Simone Dow - guitarist of Voyager speaks with Jacqui at Migraine Australia and opens up about her chronic condition and how migraine affects her everyday life in this open and honest interview.

Videohttps://youtu.be/638dPpjoq_g 

VIDEO TRANSCRIPT

Thriving with Migraine - Simone Dow 

 

Jacqui
Hi, everyone. Welcome back to another migraine Australia. Thriving with migraine interview. It's been a long time since we've done one of these, but today I have with me, Simone from Voyager. She's the lead guitarist and we're going to chat. We're just going to have a really nice casual chat with her today about how she manages to do the amazing work that she does and bringing migraine into the centre and how migraine has affected life. So let's start with, what do you do for work?

Simone
So music is obviously my main passion. Believe it or not, I was an insurance claims manager for a long time. Uh, I don't think that job really did wonders for my condition. In fact, I have a strong, sneaky suspicion that that's contributed to it actually deteriorating, but I've always done music in between that and it's always been kind of like a glorified hobby up until recently, I think. We all just love playing music. It's a great escapism for me, you know, for expressing my emotions and it's very cathartic. So it's been a very big part of my life. But more recently I've been doing some volunteer work with a company called Visibility, just to try and get back into that sort of officey kind of work again. And that's been great. There are a disability employment service company. The area I'm working in is bringing in my music and audio skills to help people with a disability. So, I basically take audio CDs and convert, well they go through a computer software and I edit them all. Um, and then they're edited so they're easy for them to skip through, to listen to, and it’s put onto this special hard drive for them that they can actually handle. So people with Ms as well, it's not just people with visual impairments, it's people with any sort of, um, issues with muscular problems and things as well. So it's just really rewarding. Like I'm loving it. Just to know that you're helping other people as well that have got similar conditions and worse conditions than you as well. You can give something back to them. So, and of course, as you know, probably, or if you don't know, the music thing’s kind of just decided to kind of skyrocket recently.

Jacqui
Tell us about that too.

Simone
Yeah, look we’ve not really been doing much as you can imagine because of COVID and I hate to admit it, but it was kind of a welcome break for me because I was having a real rough time, uh, with my health. But we've, we've applied for your vision since about 2015, which is I think when, uh, um, they first included Australia because a lot of fans were just like, oh, you guys would really fit in. Cause we're kind of electro pop progressive metal. That's the best way synth wavy sort of stuff. We got into the top 20, the last, last year or the year beforeh and we were shocked by that. Oh, we will just put it in again and see what happens. We ended up getting into Australia decides.

Jacqui 
Absolutely amazing.

Simone
Yeah. So yeah that really shocked us. I mean, it was a welcome sort of boost for us all because it's been not great, um, for the arts and in general. We're still in shock. We still can't believe that it's happening. Like, it's just really surreal at the moment.

Jacqui 
And I've listened to the single I've listened to Dreamer. And I've told you about this too. And the day after I heard it, it was my earworm of the day and I couldn't get it out of my head. And then I've watched the music video clip and I was just like, how did Simone do this. You know, people with migraine, you, and we've talked about this, where they see you up on stage and they think, oh, you're fine…

Simone
Yep.

Jacqui 
Because you're up on stage. You've got all the lights, you've got the strobes, you’re in a crowd, your list, you know, the music's really loud. So you must be fine.

Simone
Yep.

Jacqui 
But it's a completely different story. Isn't it?

Simone
Oh, look at the prep that goes into, um, performing is just insane. And you know, everyone talks about migraine toolkits and stuff. Yeah. You better believe I've got migraine toolkit for, for that stuff. Um, I wouldn't be able to prop myself up on stage if it wasn't for a plethora of medications propping me up a lot of the time. Um, sometimes the worst part is when you're fine when you first go up there and it starts coming on halfway through the set, that's a really great one.

And you're like, uh, basically have to close your eyes and just try and switch off and push yourself through and maybe tap your singer and the shoulder and go ‘Can we maybe cut a song? Because I don't think I can make it through another song.”. I would not be able to do any of this if it wasn't for a massive support network that I've got. Um, my parents, um, helping me with finances. Um, around medication, around tools like this. [points to Avulux migraine glasses] 

Jacqui 
Um, Yeah I picked those too. I was like they’re Avulux glasses.

Simone
and just brilliant go into them a bit later, but I mean, all important parts of the toolkit, but I wouldn't be able to do it with, you know, my parents supporting me and basically just saying, well, you need to still have something in your life. You can't just like, give up everything, and this is something you're passionate about and it gives you a lot of positive emotions and it's good for your health. So it's helping me, my, yeah, and my bandmates as well. I mean, they do so much that I miss out on. I miss out on meet and greets. I miss out on interviews. I miss out on chatting and talking with fans after gigs sometimes because I'm like I’ve got to go home, I can’t. A lot of the time I'm backstage before going on stage and I don't even mingle with anyone. So I'm literally just there to play the show. Um, and I, I hate it to be honest with you. If I have to be quite frank and open with you, I can be quite introverted at times, but when I’m out socialising. I used to be a very extroverted person. I'm a very bubbly person. I love talking and joking around with people. So to compromise that part, yeah. I’ve mourned it. Yeah. There's a lot of grieving that's gone on over the years of things that I've had to adjust and give up so that I can keep doing what I'm doing.

Jacqui 
I think that's what people don't understand with chronic illness either. They don't understand the mental health devastation, and that it is a grief. It is a loss. It's like,, you're mourning the future you thought you had for yourself and your morning the person you were.

Simone
Yeah.

Jacqui
It's gone.

Simone
It's like a piece of you is missing. 

Jacqui
Yeah. I described it that the rug was pulled out from under me and it just kept going and going. 

Simone
Yep, it is. And it's continuous. You never stop grieving over it because as we discussed privately after, before, it's like a rollercoaster. You're like, oh, you can have a week or two. You can even have a month where you're like, oh man, I've been really good. I've actually managed to get, you know, a good four or five hours out of each day having a good time. And then you can be absolutely bedridden for two months. Like, or weeks or days or hours, you know? There's no time limit on it. I mean, and that, that is one positive thing I guess, about music as a, as a career is that there is flexibility. There is no set hours. You don't have to do eight hours a day, which I just, I can't do that. Like I just can't do an eight hour day. I used to be able to do that, but it's like, I need to have my nanna nap, not even between the day and you know, after about three, sometimes four or five. If I have a good day after about four or five hours, it's just like, forget about it. You know, like I need to nap. I feel like an old woman before my time.

Jacqui
So what preparation do you do for gigs and recording and you know, filming and I'm fully aware that those three will have very different preparations. 

Simone
Yeah. Look, when we were touring, I mean, when we're not touring at the moment and that's something we've had to kind of negotiate as well, because like, it's hard for me. The last time we did a tour, which was about three or four years ago, I came home and I was like, I don't know if I can do this anymore. Like, it's kind of got to that point. So we're kind of trying to rejig things so that it's a bit more manageable but look, they have to hire buses with beds. That's an additional cost for the band so that I can go and lie down when I need to and sleep in this little cocoon of a bed that we've got there, like bunk beds. And, um, the band has to set up gear for me sometimes and pack it down. So that I can literally just walk onstage and perform. Medications, I'm literally microdosing. Um, throughout a lot of the time, um, medications that would probably like knock out a small elephant, to be honest with you. Like, because otherwise it's like, well, I wouldn't be able to do anything if I, if I don't do this and look, and there's times when I just can't do things.There's times when it's like, sorry guys, can you, can you do this just as a four of you or three of you, or however many people. I have to basically go, I need to listen to my body and go, like, I can't do this. Like, you guys are gonna have to do meetings or interviews and make tough decisions. Like I'm out of the loop a lot of the time if they're making some decisions, because it's like, I have to trust. Another thing that you grieve. Especially when you used to be the one that used to organise everything. 

Jacqui 
Yes

Simone
Um, it's like a control thing. You're letting go of control that you used to have and it's a very hard thing when you, you used to kind of holding onto that and guiding it and that, and just having faith in other people.

Jacqui 
And you're having faith that they are going to include you in the decision as well and not exclude you from, you know, vital decisions at the end of day. 

Simone
Yeah. But I trust them as well. I mean, we're all, we've been friends since we were teenagers. So, you know, we're like a family and I think that's really important as well, is like your close-knit network, like a family that they have to understand it as well. I mean, I could not be in a band with four people that didn't ‘see’ me. You know, really see me and go and know. I mean, they're great. They, they spot it sometimes before I've even said something like when I'm hiding it. They're like, all right Sim, you need to lie down. I can see it. So, and that's just priceless.

You need that. It's so, so important. And it is so important for your self-esteem as well. Like to remind you, like, I can still do a bit of this. I just need to be willing to ask for help a lot of the time, you know. 

In terms of treatments as well, like, um, I'll probably should talk Emgality, cause that's what I'm on at the moment.

Jacqui 
Yep.

Simone
I have to be, have to be kind of honest.It's not been as good as the Aimovig and that was brilliant. Well, I think that was the best treatment I've ever been on. Look, it wasn't a cure. I obviously still had them, but like the amount of reduction that I got and the amount of life I got back when I was on Aimovig for, I think I was on it for a year and a half.

Jacqui 
Yep.

Simone
I think it was a year and a half, but unfortunately they're like 800 bucks a jab. So it's like, who can afford that? Um, the Emgality was working. Like the first week, week and a half, I'm sort of noticing it's kind of dulls it down, but it's wearing off a lot sooner and I'm kind of dealing with some side effects that are not so great as well. So.

Jacqui 
Yeah 

Simone 
It's just the story, isn't it? 

Jacqui
It's really unfortunate. And as much as they, you know, they are a CGRP, they do tend to not act on the same, I can't remember which way it goes, but one acts on like a narrow channel and one acts on the wide channel or something like that. So, I think the Aimovig was more specific. And, um, hopefully when we get gepants, um, like Nurtech in Australia, that is supposed to be more of, it's supposed to be the most similar to Aimovig. So, maybe fingers crossed. So we need access to these medications and it just takes way too long in Australia to get these medications. 

Simone 
It does, hey?! I mean, I'm, I'm originally from Scotland. Um, but I've been here for 30 years and I could literally if I flew back to Scotland right now, I'd be getting all of this treatment for free on NHS.

Jacqui 
Yep.

Simone 
And easily available and you just think. What are we doing? Like this is, you're denying the ability for people to get some semblance of a life back. You know, like a lot of people with, with migraine and other disabilities, they’ve got so much to offer, even if they can't work full time, like they can do casual or part-time work. And they're really great workers and they're tough cookies because we have to be tough to deal with this, we’re resilient people. It’s driving me nuts. And also the other, the other thing being, um, the medical cannabis, which is something that I started using recently as well, which has been a massive help. I mean, I have reduced the amount of opiate painkillers that I've had to use and, I find I can actually do things when I use it as well. Rather than when you have opioids, it's like you're in bed. You're a zombie. Like you can talk about the Largactil. So I have that, like, I don't feel as impaired the pain is more manageable. It's just sort of sits in the background a bit more. But it's like $750 for six weeks worth of supply. I'm like literally in the process at the moment of trying to find a cheaper option around it because it's just like, who can afford that? 

Jacqui 
Yeah. 

Simone 
You've made it impossible for people to get painkillers now, like you pretty much straight banned all of them off the counter and they were like lifesavers. I don't know about you, but I used to use the over the counter stuff as a backup when I would run out of the strong stuff, because you're like, otherwise I'd be stuck without it. So they’ve removed that and they treat you like a drug seeker now and basically don't want to give you anything when you're like I'm in 10 out of 10 pain. They've got this other option here that could be helping a large proportion of Australians. But they're just stuck around the whole, you know, uh, you know, smoking weed sort of stigma around it, you know, and, and won't change the driving laws. They just won't do anything with it. It's just it's infuriating. 

Jacqui 
Yeah. 

Simone 
It really is. 

Jacqui 
It's a rock and a hard place. 

Simone 
Yeah. 

Jacqui 
It goes back to the migraine is still seen in a large majority as just a headache, it's not seen as a neurological disorder. I think that's our main problem. It’s that the education and awareness around migraine and the reality of the, the disorder is not there.

Simone 
Oh absolutely not.

Jacqui 
It’s still seen as a pain condition. It's still seen as a headache when, it's just not the case at all. 

Simone 
They don't realise it affects the entire body. I had a doctor say to me the other week, completely insensitive when I was going for treatment when I had 10 out of ten one, and she's like, you walked slow. I said I'm in pain. It hurts to walk. Like who said, what doctor says that to someone? There’s just a complete lack of empathy and understanding. Like they don't understand that the co-morbidities that come with it as well, like fibromyalgia, arthritic pain, neural, uh, nerve pain, um, imbalance issues, uh, you know, the sensory stuff. I mean, I get a lot of the photophobia and smells and like I'm sensory through the wazoo. Music's one of the one things that I actually am, that I don’t get too much of a bad time with. Thank God! But like, you know, I'm like the sensory queen when it comes to that, to that stuff. And yeah, they just don't understand it. They think, oh, it's just a headache. So meanwhile, you like vomiting and you can barely move. And your entire body feels like it's like inflamed. 

Jacqui 
I know you say you have severe chronic migraine, but do you have a particular subtype? Have you been diagnosed with the particular subtype or has that not happened? 

Simone 
That's basically been the diagnosis I've been given, yeah. Just severe chronic migraine. Um, over 15 days a month, I started off as episodic when I was, I want to say I was about nine when they've kind of first sort of started, they were just like, I'd been in the classroom staring. Like staring at the teacher and I just would get headaches every afternoon. Like just come on at like about one or two in the afternoon, particularly bad in summer. Because summer is my worst time of the year, unfortunately, with the 40 plus degrees. Um, and I would be in the sick bay, like every, nearly every day, you know? And I didn't even realize, like I used to get travel sickness and stuff like that. And you don't realize these are all like early, early warning signs. 

Jacqui 
Yeah.

Simone 
Like I still can't travel backwards on a, on a bus or anything. Like, 

Jacqui 
Oh yep.

Simone 
Like I’ll throw up if I do. It’s horrible. But I didn't get diagnosed with migraine until I was a teenager. Um, my dad suffers with them as well. Um, so it's genetic, as we all know. It’s through my entire family. They didn't become chronic until 24. I was about 24. So I'm 37 now. So that's how long I've been dealing with them since they've been chronic. 

Jacqui 
Yep. 

Simone 
It's just, yeah, it's been a, a journey to say the least.

Jacqui 
Was that about your first memory with migraine, it was probably in school, in the classroom?

Simone 
Yeah. Well that, and, um, I used to get really upset stomachs when I was a little kid before I started getting the headaches and mum just needs to think, oh, it must be nerves going back to school, but you hear about stomach migraine now.

Jacqui 
And now you’re thinking that maybe it was abdominal migraine?

Simone 
Yeah, I think so. And that was like primary school. So that would have been like, yeah, six, seven. So it's been pretty much most of my life that I've been dealing with some sort of symptoms to do with this. 

Jacqui 
We spoke a bit earlier about your migraine toolbox and you're wearing the Avulux glasses. So let's talk about your Avulux glasses. I love that it's basically like a promotional picture in all of the band photos for Avulux. 

Simone 
Yes! I'm going to try and get an endorsement, I think. 

Jacqui 
Yes, definitely try and get a sponsorship. Why not? Um, because it was like, I was when I was looking at the photos and the clip, I was like, Simone’s either wearing Avulux or FL 41 lenses. It’s one of the two. And I know when I first got my FL 41 glasses, everybody just said to me, I thought that was just a tint. You kind of look like Bono. So did, did you get, did people just sort of say to you, oh you're in a band so we just thought it was like tink glasses. Like, or did people realise it was for the lights and the strobes?

Simone 
Well, I've been quite open about my condition. Well, probably in the last couple of years when you guys started doing, cause I think I joined the chat group. I kind of started being a little bit more vocal with it. When you guys started doing the campaigns. Cause I was getting really, I was really bad then as well and I was like, you know, anything I can do to, to help, I've got a platform, plus I’m sick of trying to explain it to people when they don't get it. When you've got to reschedule things all the time and they think, oh, she's just being lazy. No. I literally can't cope with it right now. I sort of started, um, joining the group, and um, looking into a lot more of like these sort of things around that time. And I did the Migraine awareness month and so a lot of people kind of picked up on it because of the shades with migraine thing I think. Because I noticed a lot of the comments were like, oh, are they for your condition? Or are they for your migraine? And I was like, wow. Okay. People are actually starting to pick up on it. 

Now, obviously my blabbing on about it is working the guys just call me John Lennon. They’re like, love the Simone Lennon glasses. I'm like, yeah. I mean, they look cool. That's the other thing. Like they, they, they fit in with the look. So, and these are way better than sunnies like, I mean, they're not great for like, they don't cut out like high intense, like strobes or anything like that and I tend to just tell lighting people to avoid that, like the plague or if they're going to use strobe, have it point, it has to be pointing away from me because if that hits me, then it's game over. Like just dials everything down. Like 

Jacqui 
Yep. 

Simone 
You just, you don't feel the pain so much and that. It’s just like a massive help. Like just to have a little bit of dialled down. People don't understand just how much relief that brings, even if you're still like, oh, my head's still like pounding, but like the only problem being is they’re very expensive. So I'm just going to shout out to mum. She's like, my hero. Like, honestly, I would not be getting through any of this without my mum. Like, she's just like my rock. Um, you know, I'm living with her at the moment as well. Cause I'd be stuffed without her. Like…

Jacqui 
Yeah. 

Simone 
She's like, I want to take care of her. Like, that's kind of where I'm at now, so, but she's just been a complete shining light for me. Um, you know, anything that I've needed to, to help, treatments and stuff. She's always helped, like helping me shoulder the burden and the costs and stuff like that. Because that's another thing people don't understand, is how expensive it is for managing your pain because it's like glasses, medications, creams, ointments, physio, massage. Yeah, it's just, just never-ending. 

Jacqui 
Yep. It's the direct and indirect cost. 

Simone 
Yeah. 

Jacqui 
It's not just the obvious outlay it's the ‘oh I can’t go to work today, so that's another sick day’ or ‘I'm not as predominant today, um, and so is my boss going to notice, and is that gonna go on my record and is that going to go on a performance review’ and all of these types of things that can, you know, effect in the long run and it becomes an indirect cost. And then, you have the issue of so many people being on Job Seeker because they can't access DSP or NDIS. 

Simone 
Most people don't, they want to still work, but they just want to have that support system underneath them. So that like, we aren't normal people. We don't, we can't work 40 hour weeks. We need flexibility. We need the, the ability for, for a workplace to go ’okay, you can't come in today, but you can come in tomorrow instead’. I've got a ton of friends and acquaintances now through Migraine Australia um, and I know that you're all like hard-working and dedicated people that, you know, I've got a lot to offer but you just can't fit in the normal mould of what society wants from you and it's just it’s sad. 

Jacqui 
Yeah, it is. It's devastating that accommodations could be made.

Simone 
Yeah.

Jacqui 
And it's proved that way through the pandemic, that accommodations are really easy to make and they made them very quickly. So what's the one thing you wish everyone knew about migraine?

Simone 
Pretty much what we've been saying the whole way through this is that, please stop calling it a headache. It's a complex neurological disability. And yes, it’s a disability regardless of whether you work or don't work and that doesn't mean that someone's stronger or better than someone else because they can, or they can't. Everyone's condition is different. Everyone's symptoms are different. They can present differently. It affects the entire body. Please be aware of this. You know? It's not just like, ‘oh, my head hurts’. No, it's like ‘my entire body hurts’ and if we look ok, we’re doing that on purpose. We're trying to look ok. Generally, we're not ok most of the time, but we're pushing through. So always keep that in mind. I guess the other thing as well would be, I wish I kind of told myself to maybe not push myself so hard when I was younger, because I think I'm kind of reaping what I'm sewing here. You know? 

Jacqui 
Is there any advice you would give your younger self? 

Simone 
Yeah definitely!  Like, I don't think I, I pushed myself away too hard when I was younger, because it was just like, I didn't want to miss out on anything and just burnin’ that candle at both ends. Just listen to your body is, is really important and you'll be very surprised ah, how many people actually can understand if you sit down and talk with them. Especially in your close circle and will actually take on some things for you. If you just kind of go…Look at me. Look at what this doing and let them see what you're going through. I think that's the hardest, like that's the eyeopening thing for a lot of people when they actually see it as like, oh, oh, ok. 

Jacqui 
And the ones who don't and the ones that don’t want to take, you know, be around you… You're not losing anything.

Simone 
No. Oh, and there's no cure. Can we please stop saying ‘Oh, you've not figured out what's causing that yet?’. Can I please have people stop saying that to me? Because it's so infuriating and reductive that you just want to scream from the rooftops when you hear that, because there is no cure. It's just management and it's ever-evolving and ever-changing as your condition is. So… That’s like diabetes. We don't, we don't bloody, you know, we don't go, ‘Oh, you haven’t figured something out for your diabetes yet?’. I have this for life. It's exactly the same. Like, just think of any other medical condition that's for life and that's what migraine is. 

Jacqui 
We'll get there.

Simone 
I know, it’s just so slow, it just feels like, you know, and then you turn on the TV and there's that stupid Panadol ad. ‘It's lucky when I'm in the kitchen, I have a migraine headache. I take Panadol’. I’m just like. 

Jacqui 
It’s so frustrating and we have tried to do something about that and apparently, it's restricted by the TGA. That's the wording they have to use according to the TGA. And we're very frustrated by that. 

Where can we see more or hear more from you? 

Simone 
Well, um, you probably going to be seeing and hearing a lot more of us in the next few weeks because of Eurovision Decides. We are pencilled in to be performing on the 26th of February at the Gold Coast. Um, and it will be as cheesy and glittery and glamorous as you can imagine that would be, being Eurovision. 

Jacqui 
It has to be!

Simone 
And it has to be, it's all about the drama. So that's the 26th of Feb. www.voyager-australia.com is our website. Um, we are Voyager Australia on Facebook. Ah, @voyagerau Instagram and Twitter. Instagram tends to have a lot of silly videos and stuff. If you want to kind of say what we're about. W with some humour and music basically, because humour does belong in music. 

We've just literally dropped our Eurovision single, Dreamer. It's a bit of a pop banger with some heavy groovy riffs, and just absolutely stoked with the response to it as well. I mean, we're really glad that people get it, you know? Um, cause we tried to still keep that as Voyager as possible, but you know, with Eurovision in mind and ah, the hardest point being, keeping the song under three minutes. 

Jacqui 
Yes, it looks, it's a fantastic song, guys. You need to go and listen to it because it's been stuck in my head for about a week now. And I think my... 

Simone 
I’m glad you like it. 

Jacqui 
I think my husband's ready to shoot me. Um, but it's, it's so good. And I've sent it to like all my friends who are really into that type of music and into Eurovision as well and I was like... 

Simone 
Awesome.

Jacqui 
Get onto this. So it was really, really lovely chatting with you today. And we can't wait to see more from you.

Simone 
Oh, thanks for spending the time with me and just thank you to you guys and all the community for all your support. It's been a godsend, like actually just seeing other people that are going through the same things and just reading them, talking about things that you didn't realise were actually migraine related as well, like side effects and things like, oh my God, that was going crazy on that. That's part of that, you know? It's just a really good community and very informative and, and done so much for us in terms of like, help with medications. So I just, yeah. I want to thank you guys for everything that you do, and if there's anything I can do in the future to help, then yeah, please let me know.

Jacqui 
Beautiful. Thank you so much.

 

THRIVING WITH MIGRAINE

Is there someone living with migraine who inspires you? Nominate them for our Thriving With Migraine campaign! (Yes, you can nominate yourself!)

There are many amazing people doing amazing things living with migraine. Some of them are celebrities or sports stars, others are business leaders or politicians, and others are just people you know and love who are doing something inspiring. The key thing is they've managed to do it despite living with migraine. 

Last year the 151 Faces of Migraine showed how awful migraine can be and how it can destroy lives. Thriving with Migraine is like the flipside to that, showing that people with migraine are resilient, creative, hardworking, and making great contributions to every part of our world despite our condition getting little support or understanding. 

Nominate someone who inspires you that you know lives with migraine! It can be yourself, someone you know, or someone famous you don't know but would like us to interview!

We'll get in touch with them and do a short interview with them to talk about their life and work, and how they manage their migraine, which we will upload here and across our socials during Migraine Awareness Month. 

Just fill in this form to nominate someone today: https://www.surveymonkey.com/r/3DQG7SG

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  • Sarah Moseley
    published this page in Interviews 2022-04-21 15:33:05 +1000