Migraines and managing multiple disability

Station/program/acknowledgment of country ID 00:00

Thanks for downloading a 3CR podcast. 3CR is an independent community radio station based in Melbourne, Australia. We need your financial support to keep going. Go to www.3cr.org.au for more information and to donate online. Now stay tuned for your 3CR podcast. Brainwaves. Hear the world differently. Bringing community mental health to you, raising awareness and challenging stigma. Tune in to 3CR community radio Wednesdays at 5pm. Melbourne's drive time radio program featuring community organisations, powerful stories and information. Find us at brainwaves.org.au. Proudly sponsored by Wellways Australia. 

I would like to begin by acknowledging and paying my respects to the Wurundjeri people of the Kulin nation. They are the traditional custodians of the land which I'm coming to you from today. Land where at Brainwaves we tell our stories and land where stories have been told by the traditional owners for many, many years before us. I'd also like to pay my respects to their elders past, present and acknowledge all Aboriginal and Torres Strait Islander listeners that may be listening in today. So thank you everyone. Now here's today's episode of Brainwaves.

Jasmine 01:16

Welcome to Brainwaves on 3CR, 855AM on your dial, on 3cr.org.au, or your streaming service. I'm Jasmine McLennan, your host today - and today we're joined by Hannah Bloxidge. Hi. Hi Hannah. Hannah is a 32 year old gender diverse person who is a curve and disability model with Diversity models. They have experience with chronic migraine, endometriosis and complex PTSD among other disabilities and they have lived experience of addiction and incarceration. Today they are here to talk about their experience with disabilities and their their life experience really and how they learned to live with them and how they've learned to overcome some of their, some diversity and adversity. Hannah, welcome to the show. 

Hannah

Thank you for having me. It's an absolute pleasure to be here. 

Jasmine

Fantastic. We're so excited to hear your story. So maybe first, maybe just tell us a little bit about yourself and, you know, how it is you sort of relate to having these different disabilities and how you manage them.

Hannah 02:21

Okay. So yes, as I said, my name is Hannah Bloxidge. I'm a 32 year old gender diverse person. I have experience with chronic migraine that is refractory in nature. I have endometriosis and a lot of trauma ranging from childhood even up to just a few years ago.

Jasmine 02:42

I think that it's really great to have people on the show who have experienced these kinds of difficulties in their life, and are actually here and able to share that with people - because there's so many people out there who experienced migraine, who have endometriosis, who've had adverse childhood events in their life as well. I know it was recently Migraine Month and we were going to have you on the show then but we didn't get it organised. I wonder whether you could just give us a little bit of information about migraines for those who don't suffer them and how they affect you?

Hannah 03:14

All right, so migraine is a complex neurological condition. It varies from person to person. No two people experience the exact two symptoms or multiple symptoms. One in five people have it. Most are pretty much undiagnosed but as migraine is becoming more understood, more and more people are understanding that they haven't and are getting diagnosed and treated.

Jasmine 03:43

Fantastic. And for you, how does it affect your life? How often do you experience migraine? Does it affect your other disabilities? 

Hannah

Absolutely. I have chronic migraine that is refractory in nature which means that the migraine lasts more than 72 hours in one sitting. I am actually going into my fifth year in December of having refractory migraine. The migraine interacts with a lot of the other conditions as do the other conditions interact with migraine, beam triggers. For example, endometriosis causes a lot of hormone imbalances and for a lot of women who are of childbearing age, they have hormonal migraine, which is horrible. It really is. 

Jasmine

So I actually experience migraine as well, probably differently to how you do, but I know how debilitating they can be and mine are also hormonally charged and I think it depends where I am on my cycle, but mine can go for a few days as well and luckily I have medication that helps reduce the symptoms, so it's not too bad.

Hannah 04:59

Yeah it's really, it's... really hard and it can really affect your mental health as well, absolutely - like depression and anxiety are very common when it comes to migraine and as you said there are medications to help overcome it. There are abortive medications, there are preventative medications and then there are other treatments such as the CGRP inhibitors and the tryptans which most people with migraine will have to help abort. There are new medications that are coming out that aren't on the PBS yet but we are fighting to have them on there which in America have shown amazing results in breaking the cycle of a migraine whether it's a chronic migraine that is refractory or an episodic migraine.

Jasmine 05:53

Okay, and Hannah, what are some of the physical effects of migraine that really, you know, impact your life? For those of us who don't experience migraine it's... sometimes we don't really understand, we think of it as a headache but obviously it's a lot more than that.

Hannah 06:06

Absolutely as I said it's a complex neurological condition, people understand... what people who don't have migraine itself think it's just a headache, where head pain is just one of many symptoms - issues with your sensory intake where you'll have light sensitivity, sensitivity to smell, sensitivity to taste, touch, hearing, like all your senses are elevated. Different type of migraine attacks will have different symptoms... some call, they call it vestibular migraine which is often known as the dizzy migraine - where people will get a lot of dizziness. There are hemiplegic migraine which basically mimics a stroke. There are silent migraine where people will have a lot of symptoms but no pain and there are many more.

And one of the conditions I have is migraine with unilateral motor symptoms,which lasts an extensive amount of time - it affects my mobility, it affects my ability to walk, my balance, my coordination, it affects every part.

Jasmine 07:19

Sounds really difficult to manage - what's helped you manage these migraines? 

Hannah

Having a good support team people who understand and aren't just going to fob it off as something simple... having support workers that can help me get around, as I have mobility issues including other neurological conditions - getting around by myself is almost impossible, so having a good support team, you know, helps you get through having different therapies, some treatments. So for me I have Botox for Coserviogenic Dystonia, but it helps with migraine - and then being on a four month or a three month infusion that I go in every 12 weeks for. There are different at-home treatments, such as the carefully devised, people will use heat therapy or cold therapy depending on how they respond. 

People use caffeine, as it can help - and even simplest thing is having a hot shower to take the tension off the neck and the shoulders, as many people don't realise that the neck and shoulders are a major contributing factor to migraine itself.

Jasmine 08:42

And you mentioned that you experience endometriosis as well. Can you tell us a little bit about that? 

Hannah

All right, so endometriosis is a gynecological condition where cells similar in the endometrium grows outside of it. One in nine women have it. In order to be diagnosed you need to go into laparoscopic surgery and it is diagnosed from there - and then further diagnosed under a microscope. It affects your hormones, so it can also be a trigger for migraine.

Jasmine 09:22

I know that there's a lot of pain associated with endometriosis as well as migraine. How do you manage the pain, and how does that affect your mental state? 

Hannah

Okay, so at home I manage with heat packs at [?TENS] machine pain management. Again, hot showers, you'll be your best friend. I actually had a hysterectomy a few years ago for endometriosis and a few other kind of conditions, and it's been beneficial - but in saying that, in the last few months the pain has slowly been coming back, so it's not a cure but it does help.

Jasmine 10:02

I know that your childhood wasn't easy and you've had a history of addiction and incarceration. I wonder if you could tell me a little bit about how you managed to... I know you've been sober, clean for a number of years now, which is amazing. I wonder if you could tell me a little bit about the addiction and how you managed to move past that? 

Hannah

Well, addiction, it was something, getting clean was something that I wanted for myself and that's the number one thing. You can't do it for anyone else. You've got to do it for yourself. I think engaging in a lot of therapy and a lot of psychology, having all those supports, you know, in order to help me change myself - but also, you know, wanting better for myself, wanting a better life was a number one thing... and like, getting clean, it's, it is extremely hard and it's an absolute privilege to be able to get clean, but it's not... an easy path - like I was, 10 years ago I was on heroin, and I've been clean, and then six years I've been clean from methamphetamine and it's... 

It takes time, it's not something that's going to happen overnight. And I found slow change what's most sustainable and that real desire to as you said improve your life like wanting a better life for yourself and that hope and grit I guess and determination that you were going to do that yeah absolutely you know it wasn't an easy path. It was a long path, and some days felt impossible, and the thoughts and the desires for said substances were always there. But knowing that what my life is like without those substances, I don't think I'd ever go back.

Jasmine 12:08

I wonder with your incarceration and how that fits into this period of recovery from addiction, and how you manage to stay sane inside, you know, it's one of my probably worst fears is probably to go to jail. So I think the fact that you've survived that, come out the other side and live such a positive life, and now being a role model for other people is amazing. So I guess I'd love to just hear a little bit about, you know, maybe what it was like in jail and what were the ways that you managed to cope with that, and what helped you as well when you came out.

Hannah 12:50

I don't think in prison it was a matter of coping. It was a survival instinct. I was actually somebody who spent a lot of time in the Sentence Management Unit which they called The Slot, because I was quite reactive to the prison officers. I had a lot of anger, a lot of frustration, a lot of sadness. So I would often turn in on myself, where other women would actually turn outwards and that's where you hear fights. In the last time that I was there, I had started playing football. So having a football at any given chance where I was, you know, art in the [?radio], do little arts and crafts, you know, and then the medical appointment, for even back then. 

Jasmine

Hannah, you mentioned you've experienced trauma and, you know, and managed conflicts, post-traumatic stress disorder... can you tell us a little bit about, you know, a bit about that and... how you how you cope with that today,that'd be great. 

Hannah

Alright, so I grew up with childhood trauma. I lost my dad at 13 I went into state care at 14, exited the state care with minimal support and then spent a fair few years in custody which was quite traumatic... and then in 2019 I lost my mum and my brother which was heart-wrenching, it was debilitating, and I really did feel like I lost a part of myself. I think having things to keep me occupied, things to motivate me, things to help me, you know, hold on for hope, and honestly a lot of therapy - a lot. of therapy, and we're not just talking one or two sessions here there, we're talking over years and years and years... which helps us understand ourselves, how we want to better ourselves and how we can better ourselves.

Jasmine 15:01

Have you got a good psychologist that you... 

Hannah

Up until 12 months ago, I'm actually on a break at the moment. But yeah, I had an amazing psychologist who had personal lived experience with addiction, incarceration and mental illness, so yeah.

Jasmine 15:18

That just shows you the power of lived experience, doesn't it - when someone else can kind of get on some level, get what you've gone through - and there's a little bit less you need to explain because they've been there themselves, it's really powerful isn't it?

Hannah 15:31

Absolutely, and even the approach to therapy is different - where this particular psychologist would do a lot of talk therapy and she would incorporate different styles of therapy into that talk therapy, where as you see with a lot of clinical psychologists is they are hyper-focused on modules and how structure is done and how it's presented, and it really is effective - like I feel there should be more and more psychologists who have the lived experiences, particularly drug and alcohol and incarceration and trauma.

I think previously you know it was seen to not be a good thing you know I almost think you probably weren't allowed to be a psychologist or certainly a doctor if you did have any mental illness or any kind of you know incarceration addiction, and that's changing thankfully - but I think there's still a lot of stigma, even within the psychological world, like psychology world - where you think there wouldn't be stigma around mental health, there still is - in terms of the people I know that are studying psychology and the universities and how it's all run. 

So it's really good to hear there are some psychologists out there with that lived experience, that's so refreshing - and I myself would would really love to, you know, meet somebody like that, yes it's... look this psychologist was going through the justice system in the '80s, she got her qualification then and she really was a pioneer for people like myself who have studied mental health who want to help other people and want to be lighthouse... you know it really does open it up, even my psychologist was suggesting, you know, medicine, social work, you know... and to know that even though I had this extensive criminal record that was aggressive and violent at times, you know.

But you know, just because I did that, doesn't mean that everything... it's like it's not black and whit,e like there is a grey zone that, if you do work on yourself and you know, do that 180 in life, that you can be what you want.

Jasmine 17:54

And recovery is possible, right? And recovery looks different to everyone, and it's not a straight line, it's not linear - but you can, you know, learn from the things you've experienced, grow from them, integrate them into the person that you want to be, and create that... new kind of life for yourself - which I can see that you've obviously done, which is really inspiring.

Hannah 18:15

Thank you... yeah, like you know, just because you have that criminal record, just because you may be in addiction right now, doesn't mean that you can't do that 180 - there's no such thing as too late, there's no such thing as impossible, you know, you really can do it and there are people out there who are willing to give you a chance, who want to see people thriving and want to see a better lifestyle.

Jasmine 18:48

And it's great that you've met some of those people in your life... and I just wanted to ask you, and one of the things that you're doing right now is modelling, which is so great -you're a curve and disability model with Diversity Models - tell us a little bit about that, and what led you to... you know, to apply for that and start doing that.

Hannah 19:07

So I actually had done a little bit of modelling in 2017 but just wasn't in the position to be able to build a portfolio and sign with an agency. But this year I was, someone mentioned Diversity Models, and Diversity Models is actually the first agency that it doubles over as an NDIS service, so people who are on the NDIS can do photo shoots with the, and if it's up to them that, whether you sign, it's not impossible. It's an amazing service, it really is. I think it's so inspiring that there's a diversity out there now in terms of what we're seeing in advertising, in the media. There needs to be that diversity, you know, most of us, we all look so different, you know, most of us are not, are not size 8 or size 8, because I would love to see the figures on that, but I think, you know, it's a very small percentage of people. 

And that's fine and that's great that there is that as well, but we need to see every type of person, every type of representation for disability, for, you know, people of colour, for First Nations people as well, which is, it's really important. Representation is so important - and one of the things that I find that I've always struggled with, so I have bipolar, I have ADHD and I've had psychotic episodes in the past and I don't see it represented anywhere... every other, you know, obviously there's some characters in movies or in TV shows who might have mental illness, but they're sort of side characters. They're not, they're often seen as a bit dangerous or crazy or just kind of unhinged or not trustworthy.

And I think it would be so refreshing to have characters that were well-rounded, people that were, you know, doing other things, but also managing their mental health. We just need to see more of that because, you know, one in five people have a mental illness and it's, you know, it's going to touch all of us. It touches all of us, even if it's, even if we don't experience it ourselves, we'll all know somebody who does. So it's, and the same goes for, you know, all of the conditions that you are managing and all the disabilities that you have.

Jasmine 21:26

Yeah, really, really good point. I think it's great that you're doing this modelling and I'm, yeah, I'm excited to see some of the photos. 

Hannah

Yeah, absolutely. Like Diversity Models, it really is amazing. They have mature age models. They have culturally and linguistically diverse models. They have disability models. They have cold models. So I just said that and then they have families of models, you know, it basically is any, and they have curve models. They have anyone who doesn't fit the mainstream narrative. And it's really is amazing. Like with Melbourne Fashion Week coming up in October, they are now, they are jumping on the bandwagon of disability models and it's amazing to see, and it's amazing to see that, yes, you know, that more and more people who don't fit the mainstream narrative being represented, it really, it's something special, it really is. 

Jasmine

And it's just another way, I guess, for you to be that lighthouse that you talked about, to be something that other people can see, identify with, follow, have the confidence in themselves to go out and do something similar. That's the goal. And I guess I wanted to ask you, you know, is there any advice you would give others who, you know, you've experienced such a plethora of, you know, I guess difficulties and challenges and you're living a life now that's positive and it's integrated a lot of those challenges. And being a lighthouse and a figure for other people, do you have any advice for others who are, you know, maybe experiencing hardship, whether it's addiction, incarceration or, you know, a physical or mental disability?

Hannah 23:20

Yeah, absolutely. I mean, a lot of people see other people wanting a life that they want and they don't know how to grow about it. I think the best thing is if you want a life similar to us, ask us, you know. It's the best way, you know. Haven't that lived experience. knowing okay, if you can do this, I can do this too, you know. And I think yeah the best way is just going straight to the horse's mouth. That's great, I do... I give lived experience talks about my recovery journey, I guess with mental illness and mental health - and I find it really what I love about it is, I give the talk and it's to students, so it's often, they're med students, they're exhausted because they've been at you know, hospital doing the hospital rounds and they're like falling asleep when I'm talking... 

At the end of it I get these great, great questions from the audience, you know, and it's just, it's so good - because they're listening to someone, you know, a human being, a person in front of them that's talking about these, you know, sometimes quite, you know, might seem serious experiences or kind of different experiences or things they might be afraid of. And they... can see it's a human being and they can't deny that,and they... it personalises and humanises everything. 

So I think you're right, like talking to the actual people who've experienced these things, this will be one of the best ways to learn - and... that's where peer groups are really important too, so you know, if it is someone, if you are going through something difficult, getting together with a group of people who... sharing that experience can really, really help with recovery - because again you're, you've all been there, done that.

Jasmine

Did you ever have experience of peer groups?

Hannah

Not so much peer groups, but I have had some small interactions with peer support workers on a one-on-one basis, and I, honestly they are not praised enough, they undergra... like under... like, people don't have the gratitude for them that they really should, you know, it's coming out that peer support is more important that once thought - and the great thing about that is, there's been the Royal Commission into Mental Health, and one of the recommendations was to have a lot more peer workers in the workforce - and so there are a lot of opportunities now for peer workers, which is great.

I think it's still, again, they don't get the recognition and praise they deserve - but there is a more professionalised pathway now into the workforce for them... and for me, I did a peer with mental health support peer work, and then I got a peer cadetship which was really great as, like, a kind of an internship... and then I started working as a peer worker, so it was, there's a bit of a pathway now and there's opportunities out there.

Jasmine 26:13

Absolutely and you don't necessarily have to do so for in peer support, I mean there are so many revenues, I mean you hear a lot of younger people who are studying an undergrad in Psychology and Social Work, and whilst they're doing that they're doing a peer support where they do the international peer support course... then they learn on the job. 

Hannah

Yeah that's right, there's so many different ways.

Jasmine

And you said that you've studied mental health, is that something that you'd like to do in the future?

Hannah

Absolutely, so I've made a five-year plan where I would like to start doing a Certificate 3 in Community Service and then a Certificate in Offender Rehabilitation... but that's as far as I want to take it, as I'd really love to, you know, use my platform for, to help people, you know, get out of the rut... you know it's, was my silver lining to study mental health, but you know, now with the extent of the chronic health issues, studying... it's a bit hard, so I really need to go at my own pace. I think that's great to acknowledge your limitations, right? 

Because everybody's limited, we... none of us can do everything, but still having that five-year plan's really really cool, and to think that you might be able to work with people, rehabilitation with people who've been incarcerated would be amazing.

Jasmine 27:43

I know as well you're learning about content creation, can you tell us a bit about that? 

Hannah

Okay, so I get into the modelling and I do, eventually want to do some acting. But in order to build my platform for myself to be able to further advocate for others, I'm learning about content creation. I did a few hour course with the modelling agency, which has taught me the basics, and from there I'm getting more comfortable about creating, editing, getting my head around the content. I... my account is underscore savage underscore Hannah - and you can find me on both Instagram and Tiktok.

Jasmine 28:33

You heard it here first folks - definitely, definitely give her a Follow and... give them a Follow. I think this is just another way that can you can reach people and... allow people to learn from... what you've gone through, because you've got such a plethora of experience. So if this can reach more people and and get out there, that's just fantastic. Look, thank you so much Hannah for sharing your stories with us it's been an absolute pleasure, it's been very enlightening - you've... been very generous with the way you've shared, so I really appreciate it.

Hannah 29:07

It's honestly been an absolute pleasure to be here, and I really hope that... I know we can work again in the future, it's, it really is a privilege to be able to share my story as I know there are people who don't necessarily have their voice yet - and as I said, being the lighthouse for others.

Jasmine 29:29

Yeah that's what it's all about and we'd love you to be back on the show another time, Hannah. So tune in next week for another episode of Brainwaves. As always, remember to be kind to yourself as you would a friend, and take some time out for your mental health. Be safe and we'll see you next week.

Station/podcast ID 29:44

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