Poetry and MS with Nurse Educator Josie Crawley | S7E21

Summary

Living Well with MS – Poetry and MS with Nurse Educator Josie Crawley | S7E21

Release Date: October 8, 2025
Host: Geoff Allix
Guest: Josie Crawley – Nurse educator, poet, person living with MS
Podcast: Living Well with Multiple Sclerosis (Overcoming MS)

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Episode Overview

In this episode, Geoff Allix speaks with Josie Crawley, an associate professor in nursing and published poet from Dunedin, New Zealand, about her experience with multiple sclerosis (MS) and the role of creativity—especially poetry—in navigating and making sense of life with MS. Josie shares personal stories, reads several of her poems on diagnosis, living with MS, and the complex dance of disclosure and resilience. The discussion weaves together practical strategies for well-being, the challenges of aging and working with MS, lifestyle adjustments, and the healing and expressive importance of poetry.

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Key Discussion Points and Insights

Introductions: Josie's MS and Creative Journey

• Josie’s Background ([01:23]):
  • Registered nurse, associate professor, counsellor, published poet
  • Diagnosed with relapsing-remitting MS 23 years ago, in her late 30s
  • Family: two grown sons, supportive husband, large extended family
  • Poetry predates both her nursing and her MS:

    "I was a poet for a lot longer than I’ve had MS. I started when I was about 9… They amused my little sister a lot." (Josie, [02:21])

Poetry as an Outlet: Expressing and Processing MS

• The Poem "A New Lens" ([02:55]):

  • Written for the MS Society of New Zealand for World MS Day, about the protracted and uncertain diagnostic process
  • Captures the sensory, existential, and family impacts
  • Memorable excerpt:

    "...the diagnosis took months, years before it stuck – a new lens through which the world looked more challenged, more managed, less spontaneous, more dependent. The future now a gift rather than an expectation." (Josie, reading poem [05:00])

• Why Poetry? ([06:42]):

  • Helps health professionals and patients process trauma, avoid rumination
  • Provides a safe space for "hard to handle" feelings
  • Plays with language and metaphor to gain control and make meaning

  • "Poetry lets you capture... something that is hard to deal with and helps you really focus on that thought and pull the emotions in... sometimes it lets you then let it go." (Josie, [07:09])

• "Abuse by Metaphor" ([07:45]):

  • Poem critiquing how metaphors like “the hug” misrepresent the pain of MS symptoms

  "Some saddest poet penned a heartwarming phrase for MS terror where breath is stolen, wrapped in ribs, sculptured in unyielding steel..." (Josie, [08:08])

Adapting Home and Work Life

• Strategies and Support ([09:09]):

  • Leveraging nursing knowledge for self-care and adaptation

  • Flexibility: part-time schedule, ergonomic adjustments, breaks, working from home

  • Family routines to support both mobility and togetherness, e.g. walking 15 minutes to work with her husband

  • Role of yoga and headstands for energy, and “joy of missing out” on exhausting activities

  • "One of the symptoms... is like electric shocks in my hands. I found that wearing very, very fine leather gloves can really help with that." ([10:22])

  • On balance:

    "Family first. For me it’s family first... Wednesday is off. Wednesday’s beach day and I go to the beach with my husband." ([13:09])

• On Guilt and Parenting

  "I felt quite worried and guilty that I passed on those genes to them... but actually children with a parent with a disability tend to show really increased empathy." ([12:52])

• Poem for Her Husband: "You and I"

  >"The quiet bond of a shared glance / Complicit smile... Arms wide to let our children fly. I reach you, hold you, tuck me in, touch your side. You and I." ([15:34])
  

Discovering and Following Overcoming MS

• Personal Research ([16:03]):
  • Diagnosed after a year of uncertain symptoms
  • Avoided unhealthy coping and researched lifestyle changes
  • Found OMS (Overcoming MS), influenced by “Taking Control of MS”
  • Adjusted family eating, increased health-conscious habits

    "It seemed to me that being able to take control over some of my personal behaviors... I could be as healthy as possible while living with MS." ([17:12])

Aging and MS

• Navigating Aging ([18:46]):
  • The challenge of distinguishing symptoms of aging from MS
  • Importance of the OMS pillars for organ health, mental function

    "I don't feel old inside, just some of my functions have been letting me down a little bit... The Overcoming MS pillars put people in the very best starting place for things like avoiding dementia." ([19:10] and [20:54])

Swimming and Exercise as Meditation

• Swimming Practice ([21:37]):

  • Swims three times a week, a kilometer each time
  • Describes sensory joys and mindful noticing

    "When you jump into the water, it’s like jumping into a cool sleeve of champagne bubbles... and you can feel that delicious cool sink in about 1cm all over." ([22:22])

• Poems on Swimming ([23:18]):

  • "Confluence": being at one with water, light, and land

  "...Timeless trinity: water, sunlight, land. Reflect, refract me... A poem of movement, harmonious joy at one in this place lit above, below." ([24:20])

  • "Wednesdays": the struggle of disability within exercise

  "Laps three and four, I contrive with constant denial, struggle, panic..." ([24:54])

Walking: Challenge and Joy

• Walking in Dunedin ([25:28]):
  • The beauty and frustration of movement with mobility challenges
  • Describes adapting each step, learning from physiotherapists, and the importance of assistance

    "To walk independently... I generally need light. If I walk in the dark, my knees really ache. I do avoid uneven ground at night." ([26:35])

  • Family support:

    "...my sons... help me down, they'll go in front of me and I'll use their shoulders like a stabilizing walking pole as soon as it gets steep or downhill." ([27:23])

Balancing Family, Career, and Self-Care

• Finding Balance ([28:16]):
  • Early years of parenting and MS: "any sense of balance was impossible"
  • Now carves out time for reading, yoga, swims, and private rituals like saying her mihi each morning

    "Working three days a week, yoga at work, Wednesday beach day with my husband... little routines that help you find balance." ([29:19])

  • Supportive husband helps her prioritize rest, reminds her not to overwork

Medication: Experience and Philosophy

• History of Medications ([31:32]):
  • Initially ineligible for treatments in NZ
  • Used methylprednisolone and later Copaxone; experienced ocular side effects and eventually switched treatments
  • Poem: "Well, Unwell" - about relapse

    "Familiarity assured its pace, tracing where it had been before, claiming limb after limb, stealing words from my mouth..." ([33:28])

  • Currently receiving Siponimod infusions, feels healthier

    "Nowadays, I'm on Cypri infusions every six weeks and I feel like me." ([34:45])

Disclosure and Privacy at Work

• Gradual Openness ([35:10]):
  • Initially told only colleagues, not students
  • Over time, shared in more detail, especially via poetry
  • Poem: "Diagnosed an Islander" ([36:16]) explores isolation, difference, and adaptation:

    "…no blueprint for tomorrow out there. For those not marooned on islands, the world speedily spins fragile plans with gossamer threads..."

  • Now intentionally models advocacy and resilience to students, planning scholarly work incorporating poetry and lived experience

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Notable Quotes & Memorable Moments

• "[Poetry] lets you capture... something that is hard to deal with and then you can play with it until it feels like it's really caught what it is that you're feeling... sometimes it actually lets you then let it go." (Josie, [07:09])
• "Flexibility, celebrate the positive, choose where to put your energy, family first... Use your support around you." (Josie, [13:15])
• "Wednesday’s off. Wednesday’s beach day and I go to the beach with my husband." (Josie, [13:09])
• "The diagnosis took months, years before it stuck – a new lens through which the world looked more challenged, more managed..." (Josie, reading poem, [05:00])
• "Now I look forward to relaxing in that Lazy Boy for two hours and having my headphones on." (Josie, describing medication infusions, [34:48])
• "I'm really quite happy now for my students to know that I do [have MS]. I think I can have a role to help them and support them and to show that it's not the end of life if you are diagnosed with something – it’s an adjustment, a different way of doing things." (Josie, [38:20])

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Key Timestamps

• 01:23 - Josie introduces herself and her dual identity as poet/nurse/MS advocate
• 02:22 - Josie reflects on poetry's place in her life and career
• 02:55-05:55 - Reads "A New Lens" poem about diagnosis
• 06:42 - Explains why poetry and narrative are therapeutic for MS
• 07:45 - Reads "Abuse by Metaphor"
• 09:09-15:34 - Describes family/work adaptations and reads poem for her husband
• 16:03 - Discusses discovery of Overcoming MS program
• 18:46-21:14 - Talks about aging with MS
• 21:37-25:12 - On swimming as meditation and poetic practice; reads "Confluence" and "Wednesdays"
• 25:28-28:07 - On the challenges and joys of walking with MS
• 28:16-31:16 - Discusses balancing family, work, and personal well-being
• 31:32-34:55 - Outlines experience with medications and reads "Well, Unwell"
• 35:10-38:36 - Privacy, disclosure, and role modeling with students; reads "Diagnosed an Islander"

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Resources & Further Reading

• Poems by Josie Crawley are noted for their honesty and are available via PDF in the show notes.
• Listeners are encouraged to visit overcomingms.org/podcast for additional information and episode resources.

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This episode eloquently illustrates the power of narrative and community in living well with MS, providing listeners with both practical strategies and a celebration of creativity and resilience amidst adversity.

Transcript

[A]

When I was first diagnosed back in about 2003, I told my colleagues, but not my students, and that was because I needed to be able to shift things around and make a really supportive network. I guess that was probably also shaped by my colleagues and being in nursing school. Of all the places you expect to be caring and thoughtful about disability, they are one and they really did show that they were just amazing.

[B]

Welcome to Living well with Ms. This show comes to you from Overcoming ms, the world's leading multiple sclerosis healthy lifestyle charity, which helps people live a full and healthy life. Through the Overcoming Ms. Program, we interview a range of experts and people with multiple sclerosis. Please remember, all opinions expressed are their own. Receive monthly tips and ideas about Living well with Ms. By signing up for our newsletter at overcomingms.org/newsletter. And now let's meet our guest.

[C]

Welcome to the latest edition of the Living World with Ms. Podcast. Joining me on this edition is Josie Crawley from New Zealand. Josie is both a nurse but also a published poet. So I'll get straight in and ask you, Josie, could you introduce yourself, your poetry and also your Ms. Diagnosis.

[A]

Oh, hello, Jess. Thank you very much for having me on. It's really nice to be able to talk to people about ms, I guess about journey and also about my poetry. And I do hope that some of what I say helps or resounds to other people and helps make things make sense. So I am Josie Crawley, or I'm Josephine Performal. I've got two grown up sons and one very supportive husband. I've also got quite a bevy of sisters and brothers, different siblings, and a whole lot of nieces and nephews, well over 30. I was a nurse, a registered nurse. I trained as a counsellor as well. I got a little bit into narrative therapy and I also then became a nurse educator. And I've been a nurse educator for, oh goodness, 25 years in my current job and about seven or eight years before that in a different sort of job as well. And I'm now an associate professor in nursing and I live here in Dunedin in Aotearoa, New Zealand.

[C]

And do you have a poem you could introduce, I believe a new lens poem?

[A]

I can indeed and I will indeed. I guess a little bit more about me. I'm 59 years old now and I've been, I guess I've lived with relapsing, remitting Ms. For about 23 years and I guess if I talk about all of those different things that happened, I feel a lot more than a person with ms, I have Ms. It's part of my. In who I am. It's been part of my journey. But I was a poet for a lot longer than I've been a nurse and I was a poet for a lot longer than I've had Ms. I started when I was about 9. I used to write poems for my little sister. They were very heavily influenced by A.A. milne and by Nib Lytton. But one line I can remember was, there goes a piece of thistledown. Let's watch it as it flies. So they went exactly high out. But they amused her a lot. And I didn't really intend to become a nurse either. I kind of fell into it after being a nurse aide and realising how much I loved it. I had been thinking about going and doing medicine, but I really wanted to do nursing instead because it was more about talking with patients and really communicating with them. And I guess the poems and the narratives, I've always used poems and narratives. They're always a way of making sense of the world to me and I use them within my nursing as well and within my nurse educating. I use my own poems, I use other people's poems, other people's narratives. I encourage students to write poems. It's not really a new idea in nursing, in as much that Florence, even right back to Florence Nightingale, she said that nursing is both a science and an artist. But just to give a little bit of an idea here, here's one poem which is about when my diagnosis with Ms. As well, and it's called a New Lens. Self diagnosis. Carpal tunnel. Painful gloves matched right and left. An odd coincidence that wasn't sensation in both feet. Then lower limbs insidiously crept into a concrete box that locked me out from the collarbone down, leaving a frame without strength, electrified. An abstract study of twitching pins and needles shot with exploding electric fireworks, pricked and pulled, Instructed to walk a line, put a finger to nose, relax while we hit you with a hammer. Tell me without looking, is it up? Is it down? Is it soft? Is it sharp? Push against my hand. Now pull. Each challenge exhausting, disclosing my disobedient body was an anarchy. A week of tests, then waiting, waiting, waiting. The MRI was inconclusive. Keep eyes closed and meditate. That in a very noisy forest with giant woodpeckers and people playing laser tag, spinal tap. Don't look at the needle or think about where it's going. Electric probes, blood tests, scans, they all provided a blueprint for a healthy body disconnected from its control center. A puppet without Strings My scarred Mylon might be a tumour, not one they wanted to touch, wait and see. With steroids controlling the weird devil, pills that fueled energy, weight, sleepless nights and personality swings, my family became my crutch and my motivation, withdrawal and extended roller coaster. The diagnosis took months, years before it stuck a new lens through which the world looked more challenged, more managed, less spontaneous, more dependent. The future now a gift rather than an expectation. The the feel of sharp stones under tender feet. Something to celebrate. Odd to look back. This beginning signposted what had already been perhaps a decade or more. Flirting with vision and brain, for the most part hidden, percolating my DNA, changing my journey, but not my destination. So I wrote that actually, just although it was about my diagnosis 23 years ago, I wrote that specifically for the Ms. Society of New Zealand, who were looking for things for Ms. World Ms. Day last year, when a theme was diagnosis and that went onto the global map. Is one of the new.

[C]

I think anyone with Ms. That it was. Yeah, all the things you touch. And I don't know if people without Ms. Would be as appreciative, but it was just all the things that you go into there, the spinal tap, the mri, the sound of the MRI of those. Yeah, it really touched on and all. And the. And the physical experiences as well of having Ms. And. Yeah, that was. Yeah, that was excellent. So how do you find that creativity, and in your case especially poetry, can be an outlet for someone on their Ms. Journey?

[A]

Okay. Well, it's actually, it's quite well known that writing poetry can be a way of actually dealing for health professionals, of dealing with things like compassion fatigue or with some of the things that you see with anything that's hard to handle, anything that stays in your head. And I think, as anybody who's had Ms. Knows, it certainly stays in your head anytime you're given that news. And depending on when you were given that news, and 23 years ago when they gave you that news, they were pretty depressing about it. They suggested we looked for a house that had full mobility things straight away. They really made it sound like it was not quite a death sentence, but it's certainly an extremely unpleasant thing to have. And I'm not saying I would ever have wished to have had it, but poetry lets you capture, I guess it helps you acknowledge that something is there that is hard to deal with and. And it helps you really focus on that thought and to pull the emotions in that are around that. And then you can play with it until it feels like it's really caught what it is that you're feeling sometimes, sometimes it actually lets you then let it go. It can get rid of that intense sort of, you know, sort of rumination when you just go round and round and round. It's got a place to go and once it's out of my head or out of there, it can go to a different place. I've got another little one here which is a wee short one, which I wrote after I'd seen a healthcare professional I'd had way many years back, but I'd had another exacerbation and I'd really wanted to avoid having steroids because I did not enjoy having steroids and I was avoiding them, avoiding them, avoiding them, until I suddenly got this horrible symptom and I felt so diminished after I went and spoke to the professionals about it. So here's a little one, a very short poem called Abuse by Metaphor. It says figurative language hides, sharpens blades, words honed for the cruelest cuts. Some saddest poet penned a heartwarming phrase for Ms. Terror where bre stolen, wrapped in ribs, sculptured in unyielding steel, each panet gasp made less with metaphoric irony, the hug empathy excised with the words Smith's scalpel. So I don't know if you've ever felt the so called the hug, but I think it's such a revolting use of a metaphor to take something that is wonderful and warm and attach it to something I found absolutely terrifying. But yeah, yeah.

[C]

And so how have you and your family and your work as a professor of nursing adapted to living with ms?

[A]

Yeah, I guess, I guess quite a lot, actually. I think having been a nurse gives you, I guess, no matter what profession you are or whatever your background experience is, you pull on that. It's got some cons. Nurses, we always tend to think the worst. Oh, gosh, about 15 years, about 10, 15 years before I was actually diagnosed, I had an episode which, in hindsight, knowing what we now know probably was ms, where I lost words for about a week. I had all of these words that I just couldn't finish a sentence and the words were just not there. And I immediately thought, a brain tumour. That's it, I've got a brain tumour. They did all sorts of tests and all I found out was that I had an unusual amount of sleep waves. And then after a week, the words all just came back. They were there, things were fine. I think knowing the pathophysiology of your body and how the body works Helps quite a bit. I find that helps things like peristalsis, which is the way the bowel actually works, the way it moves a bit like a wiggling worm. I find it's quite helpful to actually be able to think about things like that, to encourage the body to actually function in a way that you want it to function. It's a bit like when you're first giving birth and the midwife says, imagine your cervix as a rose, a blooming rose. Which, Geoff, you've probably never ever had anybody tell you. But presumably not having a cervix, it's sometimes actually imagining it can really help it. But if you know the pathophysiology of how it works, that can actually help quite a bit. My work as an associate professor has. I've been there for 25 years in my current workplace and I have a lot of loyalty to them because they've treated me really well. There's been some funny stories there as well. One of the symptoms I've sometimes have is like electric shocks all up and down my hands. And one of the things I found that helps quite a bit when you're typing. Otherwise when you're typing on a keyboard, it helps. It can be excruciating. And I found wearing very, very fine leather gloves can actually really help with that. And there was one time we had a bit of a Parents and Children's day and one of my colleagues came up to me the next day and she said, I've got a bone pick with you. And I said, well, what's that? And her daughter had been hunting around everywhere to find some gloves. Like the Elegant lady. You're a $8. She required them. But I've got a few sort of little themes I've worked out of how I do deal with this, both with my family and my work and with the Ms. And juggling it all together. And I think one of the first things is flexibility to really slow down and focus on what I can change at work. Really practical things. I work three days a week, so I'm 0.6. I work three days and I work three days. Monday, Tuesday, I have Wednesday off, then I work Thursday and I have Friday off in a nice long weekend. Really little things like I have a chair with a headrest. I have a room that's actually got a door instead of being in an open plan place. I can work from home if I'm not actually teaching. At times I've got noise cancelling headphones if I need them. My room's really close to the loo. I can be flexible when I go to conferences so that I can have an extra day or two, travel there an extra day or two and just sort of relax and get over the travel before I'm actually presenting or doing anything at the conference. Little things like that. Headstands. I do yoga as well. So I had one teaching session that was just too long and I was just exhausted. Halfway through I stopped. I just couldn't think. So I said to everybody, okay, everybody, five minute break. And I went and found a little empty classroom and started doing headstands up against the wall just so my brain could think and relax again. So that's one thing is be flexible, I think. Celebrate the positive. There's an awful lot of positive in our lives, very definitely as in mine. So sometimes I'm still working on the joy mo that joy of missing out. But on the whole the positive things are I find meetings exhausting and my work's really good with it. They know I often don't go to meetings. Wednesday is off. Wednesday's beach day and I go to the beach with my husband. I was quite worried at first about my children. I felt quite worried and guilty that I passed on those genes to them, that they had a parent with a disability. And I did a bit of research and found that actually children with a parent with a disability tend to show really increased empathy and I think that's a really good trait. So I think that's there and changes from the ons diet things. The whole family probably ate healthier and they certainly had a much more healthy mum role modelling, sort of more healthy behaviours. So that's really the flexibility. Celebrate the positive. Choose where to put your energy. Family first. So for me it's family first. My children, the last few years, while my children were little, it was probably my children plus me, my poor husband tend to come up at the back. And I'm really hoping that now my children are grown up and we're in a different part of our life that I can start putting them in the front alongside me a bit more. We build little things in. So we park 15 minutes away from my work and we walk there together. And my husband used to walk with me and carry all my bags and things because I could walk but I couldn't carry things. And then when I'm well enough, I carry the things as well. But we have a coffee together and then we walk over to work and that's really nice. The fourth thing there is user support around me and I had to really learn how to do this. This was not easy at the beginning. I actually saw a psychologist at one time because I'd been a relatively active mum before Ms. Sort of came along and changed that journey a little bit. I felt really guilty that I wasn't able to take the kids biking, canoeing, and some of the things that I had been doing with them when they were younger and with seeing that psychologist really helped to make a bigger goal. The bigger goal was I wanted my children to love the outdoors. And there were many ways I could help them still love the outdoors. And that was at that stage that was there paid for home help. At one stage. I still will go out with friends, not if I'm really tired, but someone else will drive at night and I'll be at a friend's place, but they'll let me have the chair that I can actually rest my head back up so I don't have to hold my head up, things like that. So I think that's probably the biggest things, what I would actually say the balance with my family. My family's been amazing. My son's really supportive, but my husband is really. He's incredibly supportive. Ms. Doesn't necessarily even have a feature. I'll really think about that with my husband. He's been caring, supportive about my career, about parenting. And I've got a tiny little poem that's just about him, if that's okay. Yeah, okay. It's just called you and I. The quiet bond of a shared glance Complicit smile. We noticed each other nurtured a spark wandered touch hands through decades clutched tight when weighty losses closed in Arms wide to let our children fly. I reach you hold you tuck me in touch your side. You and I. So that's. That's us.

[C]

And so you've mentioned Overcoming Ms. So how did you discover the Overcoming Ms. Program?

[A]

Okay, so remembering this is back in about 2002. So at that point, stage in time, and I didn't actually quite have a diagnosis for best part of a year, sort of wandering around and doing different things. And I had a supremely unhealthy few months where they. They thought it might have been a tumor on the back of my neck, but they couldn't quite work it out. And I just kind of thought, okay, well, I don't know. I. I just threw out the baby with. I was probably the least healthy time I've actually ever had in my life that first little bit. So once I actually had a diagnosis, it was quite a relief. To me, that was better than a tumour, an inoperable tumour. At that stage. I guess I did what I've always done, particularly as a nurse, and I started researching everything and anything and my Ms. Nurse knew that I was researching everything and anything and she said, oh, have you seen this book, Taking Control of ms? So I looked at what George had written at that point, stage in time and I read it. I just did more research as well around it and found things like avoiding anything you'd ever been allergic to with something else that came from somewhere else. And I guess I started then it seemed to me that being able to take control over some of my personal behaviours, that it can be that I could be as healthy as possible while I was living with Ms. And also hopefully avoid some comorbidities. Who wants diabetes as well as ms? Not me. So it made sense to me to be able to try to do that. So I guess I started really doing a lot of those things and around two, you know, about, about or within the year of diagnosis, once I actually had the diagnosis, I was there. It's hard for me, as perhaps for some people at least, the diet things weren't because I had been vegetarian for many years. I wasn't at that stage, but I had been before, so I knew that I could certainly make those changes quite easily. And I think actually through that I've actually been healthier than I've been for years. In fact, most of the family and my husband probably has been as well. But I'm not the only child.

[C]

Doctors are always telling me how healthy I am. I'm there for an Ms. Reason. But they're saying I'm 54 now. And they don't. People go, I can't believe you're 54, you're much younger. And I think it is just a healthy lifestyle. It makes a big difference. And talking about age as well, I was just going to bring up. So aging with Ms. We don't often talk about getting older with Ms. It's actually particularly for me this year. My, I'm 54, my, my father had Ms. And, and he died at 54. So it's quite a key year for me. It feels like if I'm, you know, that I'm not going to die at 54 and it's a very different prognosis back then. But so aging and ms, how, how have you been able to accept the aging process with having an Ms. Without panicking, without thinking things are going to get worse?

[A]

Okay, well, first, first of all, I'm really sorry to hear about your dad. That makes a really hard year for you. I know that you're going to feel really good when you turn 55, so. And, and I'm sure you've. And I'm sure you've all turned 55 and 65 and 75 and quite possibly 85 as you're going along. How do I feel about the aging process in MS? Well, I don't, I don't. As I said, I'm 59. I don't feel old inside. Just some of my functions have been letting me down a little bit. My mother, who lived till she was about, we said that she felt like she was 28 until she was about 80 and so I'm hoping I'll stay there a little bit. Aging does bring some extra little bits and pieces. Decreasing eyesight, I don't know, like these glasses. Yeah, yeah. Hearing gets harder, particularly when there's lots of noise. And it's a little bit tiring too. So you get the joining up of the losing some hearing with a lot of noise, plus Ms. With a lot of noise. So you do get a little bit of joining together of two things where your, your function's lost a little bit. So it take even more energy to be able to hear. I find that particularly in lectures there is if the students are all talking or in a meeting, if everybody's talking instead of listening. Teaching, I often have two pairs of glasses strung around my neck and an over the ears sort of microphone as well. So I can sort of carry everything left, right and centre. Other things that do get older, and this is the nursey part again, sometimes you know too much as a nurse. Things like your bowel and bladder function do tend to change quite a lot just with aging. But I think I've had a little bit of a jump start on how to manage some of these issues. So that's a bit of a present for me. Messing away. I think the hardest thing is something that most people have found even earlier and that's that it's often really hard to tell what is aging and what is Ms. You know, if you're feeling sore and achy in the morning or if you're walking downstairs and it's really hard to walk downstairs. Is that Ms. Or is that early osteoarthritis? You know, if you're tired in the evening and you've got some sharp palm, you know, some sharp pains or fuzzy thinking, if you're losing words or losing names, you know, you've got to Expect some decrease in your organ function and your brain function just with aging, taking this right out of the picture. But we're all quite unique genetic combinations. So I do think the Overcoming Ms. Pillars put people in the very best starting place for things like avoiding dementia, for better organ function. So I think if you are following the Overcoming Ms. Lifestyle, or at least a healthy lifestyle, even a Mediterranean diet, whatever it might be, then I think that you are probably in one of the better places for aging.

[C]

And one of the things that we haven't mentioned is meditation. So I believe you use swimming as a form of meditation, obviously, as well as exercise. So could you tell us a bit about using swimming and exercises? Meditation?

[A]

Absolutely, absolutely. It's not been a meditative thing. When I was a little girl, I had quite long hair and I can remember going to take a breath and we didn't have little swimming caps. At least we didn't have any little swimming caps. Every time you turned your head to take a breath, you got a mouthful of hair instead. And that was not at all calming or meditative. But I swim three times a week. I try to swim a kilometer each of those times, but I'm flexible with it. If I'm really tired or something else is happening, it might be a little bit different, a little bit less. In winter, I swam inside in a pool and I had the most amazing. Very lucky in Dunedin. Got beautiful pools and it's got. If I go early in the morning, I can see the sunrise. There's glass right down to the floor. Each time you come up with a breaststroke, you can see the sun rise, hitting the trees. It's set in a green belt which is all bush. And then I'm looking out across, you can see hints of the harbour, hints of the sea. It's just stunning, even when you first jump in. I think it's really about noticing is where the meditation comes in. It's like when you jump into the water, it's like jumping into a cool sleeve of champagne barrels and you can actually feel them lifting off your skin and you can feel that delicious cool. Just sink in about 1cm all over, which is quite a present because I run quite hot and in the summer I'll be swimming out often in the open air. And we've got a saltwater pool sort of right next to the harbour, right next to the sea. Otherwise we've got harbour, we've got the sea, we've got lakes. And I usually take turns doing all of those. I've got a little poem here about when it's all going together. In fact, two little poems to show the difference that might make that work. This first one's called confluence. Sinclair St. Clair's the outside pool down beside the beach. And if you swim there at lunchtime, you get the sun directly above you. And these really lovely playing of the light and the water. I see you shadow ephemeral grace glides above smooth tile with spiritual quest Rhythmic hands divide Silken skim ahead Displacing caustic patterns, placing caustic patterns Sped from sun to earth millions of miles to lattice for me, my corporal self Precarious gate transformed through physics Timeless trinity Water, sunlight, land Reflect, refract me, reflect me sleek A poem of movement, harmonious joy at one in this place lit above, below. So that's when it all goes together and you can watch the sun sort of shattering through with those beautiful light patterns and just really work with it. And that's what I mean about the noticing. Really annoying and just noticing. But sometimes it's quite hard work to get that sense of meditation. So here's one I've called Wednesdays. Swim laps one and two. My arms shattered, severed, flaccid, hung by a sinew. Hermits place, silly buggers, my spine and electric eel. Laps three and four. I contrive with constant denial, struggle, panic. Swim one armed through a firestorm of voltage. Laps five to eight. Focus envisaged neck, a locked cord. Observe two hands break the water. Distract brain reroute from sensation. Armpit to sky. Three quarter stretch, fingertips to floor, Little finger break the exit. Breathe out for four. 1, 2, 3, 4. Brace from shoulder and hip. Breathe in. Armpit to sky dogged, determined repetition detours my central nervous system. Lapse 9 to 20. 1, 2, 3, 4, breathe. So that's swimming.

[C]

Really enjoy swimming and walking and so walking. What's the success bit about the joy and the challenge of walking? Because a lot of us have mobility symptoms, so there's two sides of it. There's love walking, but also challenge walking.

[A]

There are. There are definitely two sides to it, I think part of the joy of. Well, there's a joy just in moving. But part of the joy for me too is I live in Dunedin, which is a beautiful small city. It's full of nature, beaches, clay cliffs and it's full volcanoes in the most beautiful light. Our sky is often full of colour. And walking and being actually inside this beauty while you're walking is really a joy, but also a frustrating challenge when you can't or when it's really hard or when it's really awkward. As you knew from my first poem, my first significant Ms. Attack that I knew about affected everything from the collarbone down. And I could remember the physio graduating me from balancing on cushions to taking me to field trips to our local shopping centre, which had some little slopes with a handrail. And she broke down to me how to actually do a step on a downhill slope, leaning back, you know, heel first, then rolling forward onto the toe, breaking it right down to that level. And the effort of concentration involved in taking a step. And I wrote a poem about that. I won't read that one at the moment, but really uncovering neurological fatigue. And I found my students really find that really helpful because it's a very similar neurological fatigue, whether it's Parkinson's or whatever it might be. I think to walk independently, even when I'm well, to walk independently as well as energy generally need light. I need to be able to see where the ground is and to gauge what pressure is required. If I walk in the dark, my knees often really, really ache because I misjudge where the ground is. If I can't see it, I can't feel it. So, yeah, I do avoid uneven ground at night. One of the things is when I can clamber around, I do. I do as much as I possibly can when I can. So in terms of walking of many of the hills and the peaks around where I live, I love being able to look up at them and know that I've walked up those. I don't usually walk on my own, for example, up the peaks around there nearly always had been with my sons and they'll help me down, they'll go in front of me and I'll use their shoulders like a stabilizing walking pole as soon as it gets steep or downhill. I guess my husband and I, we try to walk around about 10,000 steps a day, but not all at once. We've had to start from scratch. When I've not been able to walk at least four or five times, we would just have to start it very gently again for each holding my hand. And we'll go around, you know, go half around the block and then just gently work back up again. So that 10,000 steps is usually three or four walks, usually with a coffee included if we can. We have heard somebody said before that they've seen us walking arm in arm and they lovely that people have been married for over 30 years, still sort of walk hand in hand, but he's often just leaning me in with him.

[C]

You mentioned your family, your career. So how, how do you balance your life? You've got your family, your career and how do you balance that with having enough time for yourself?

[A]

I think when my children were little I didn't though any sense of balance was actually impossible. But I think that's true for almost any parent. Take the Ms. Out of it. It's very hard with one of the most. When they were young, my husband and I used to take turns to sleep in in the weekend. So you always had one day in the weekend, one morning in the weekend where you could actually sleep in. I think some of the balance, when my boys were sort of a little, still young, but a little older, I had this amazing weekend away where I flew up the south island to go and visit my parents. And I read and I read and I read, I read books and books and books and books. I read till 2 or 3 in the morning and for the first time in a long time I felt like myself. And since then I have really rebuilt reading back into my life. So I'll go to bed sort of half an hour earlier and I'll read and that feels like the my time. Working's my time as well. And I do yoga at work as well and I do it at work because I wouldn't have the energy before or afterwards. But during work is absolutely fine. I think a really big part of the Balance is working three days a week, working 0.6. I swim on the days I don't work and as I was saying, I do yoga at lunchtime means that I don't by having the Wednesday as beach day with my husband. That's our time. So that's really nice. Yeah. And most mornings, as I've mentioned, even on week on work days, we start off with my husband and I start off with the coffee together and park the car and then go for that little 15 minute walk together. The balance is there. The balance is there. But it really does help that I had an incredibly supportive husband and he helps me keep balance. He reminds me not to work on my days off work, doesn't pay me to work when I'm, when I'm, you know, when I'm not meant to be working. And he, you know, he absolutely loves seeing me sitting down reading a book. He encourages me to slow down and enjoy where I am and to not stress about the next thing. And he does also point out to me if I'm starting to look really tired or start stumbling over my feet or weaving around that type of thing. So yeah, I think, I think that's probably the balance. And saying no to some things, particularly things that don't really matter to me, being able to say no to those things. And I guess there's little routines, little routines that you build in that help you find the balance. First thing in the morning. I'm a bit more of a morning person than my husband but first thing on a workday I actually go for a little walk just around the block and there's a fort next door to our house. Not an old fort but a children's play fort. And I climb up there and I say my mihi, which is a. It's a te reo mori greeting and it links you in to your ancestors and your place and who you are and acknowledges your parents. It just grounds you in your own life each day and your son at the moment's often coming up when you do that and while you're doing it, because it's the same little walk, I can really gauge where my energy and my coordination and my clunkiness is. So that can really help me prioritize what I could actually hope to achieve in the day. So I think, I think it's really.

[C]

And we've talked quite a bit about lifestyle but what you mentioned, you've touched on steroids and trying to avoid steroids. But what has been your general experience, what's been your general experience with medication? The medication pillar overcoming everything anti medication, it's an optional sure component.

[A]

Well, I mentioned George Dilleck and at the time he recommended capexone or glycemia acetate I think it is, or I can never say the word gleam, I still can't say it, but taxone is a trade name. When I was diagnosed though in 2002, even though I was having couldn't walk and was in hospital for a week or anything else at that stage under New Zealand system I wasn't actually eligible. I wasn't perceived as having a high enough level of disability for long enough to be able to get any disease modifying treatments at that point stage in time. I did have the methylprednisone for a wee while. I took those regular pills. They took about a year to get off and then after the pills they changed the way in which they did methyl prednisone to having an infusion with a thousand milligrams Pfizer Kite. My children used to really like it because I was really, really happy. And then after that they stopped making an infusion and you could have three days of the methylpred but that the last time I had my eyes tested, my optician saw the beginnings of steroid damage in the back of my ey. So for the last times I've had exacerbations, I've tried to do them without steroids. And in fact, the last time I had steroids was when I had that Ms. Hug La hug, which I wrote that poem about because it was just so terrifying. But otherwise I avoid them. After a couple of years, I did become eligible to be able to have the capaxone, and I did actually have that for quite some time. And I also had gabapentin, which I have. A lot of people don't know that gabapentin wouldn't necessarily help everybody, but for me, it really helps control pain. It's at the sensory pain. Funnily enough, one of its side effects is fatigue, but for me, it actually really relieved fatigue because the fatigue of dealing with the sensory pain was much, much worse than the fatigue I get from the pills. And I do take magnesium. So I had 10 really good years on Capaxone, was where I would have said I was, as the doctors say, where I did very well. And I'm going to jump into a little poem here. And then I had a big exacerbation where I wrote this poem and then we change meds. So this poem's called well, Unwell. After I'd been well for a propitious stretch of time, suddenly I wasn't the unwell moved with unsettling speed. Familiarity assured its pace, tracing where it had been before, claiming limb after limb, stealing words from my mouth, hiding the ends of thoughts, Then the beginnings too. Lost in a fog of fatigue, I forgot how to swallow for the month it takes to be well again. I wake every day unsure if I'll remember how to breathe until I do. And so after that exacerbation where I wrote that poem and mri, I went on to Tickfidera, and I lasted six months on that. I found the pills absolutely revolting. Main reason I found them revolting is the side effects were horrible. And to counteract the side effects of Tickfidera, you have the pills at certain times and you eat them with certain food, and they just seem to be taking over my whole life in a way that I don't usually get it. And they also really increase my anxiety, though I didn't realize that until after I'd come off them. Nowadays, I'm on to Cypri infusions every six weeks and I feel like me. So these are looking really good. I'm only on about my fifth. Maybe just had my fifth one, so we'll see how we go. But I quite look forward to relaxing in that Lazy Boy for two hours and having my headphones on.

[C]

And how have you balanced. And I believe you've got another poem for this. Have you balanced privacy versus disclosing diagnosis professionally to your work? And have you done that via poetry?

[A]

Okay, okay. This one's been a process. It's not just being one decision. When I was first diagnosed back in about 2003, I told my colleagues, but not my students, and that was because I needed to be able to shift things around and make a really supportive network. I guess that was probably also shaped by my colleagues. And being a nursing school, of all the places you expect to be caring and thoughtful around disability, they are one. And they really did show that they were just amazing. I've also included quite a few different teaching strategies that hold energy. So things like writing on a whiteboard, lifting your arms up, exhausting. But I just, from that moment on, got students. So I just built it in, got students to move tables around, students to write on whiteboards, but I didn't tell them why. I actually, first of all, at that stage, used to say, look, you've got to practice this. At some stage, this will be you. Which, of course, it was then, gently, over time. By about 2017, I was sharing with students that I lived with a disability. And some of them were obvious, like my ageing eyesight, but I didn't give them specifics. And then in 2021, I wrote and published a poem called Diagnosed an Islander, which if. And I share this with nursing students. When they're learning about disability through multiple lenses, they have a whole lot of different sort of narratives about different lived experiences of different types of disabilities. And this is one, and I've written there as the author, so diagnosed in Islander. Am I cursed an island dweller, or blessed a frequent flier cast away? Where quickness of thought fatigues misfired neurons, such synaptic chaos celebrates successful, successful completion of a day, careful allocation of energy and need, energy and want, wanted, longed for energy today, no blueprint for tomorrow out there. For those not marooned on islands, the world speedily spins fragile plans with gossamer threads of health, wealth worth, career status, eggshell futures for the sanguine island life illuminates the moments that blur. Do mainlanders reveal a river and an obedient bladder? Navigating a steppe, the supportive joy of a pillow behind the head, the small things that make a day or dasa nuanced challenge of being alive rushed past. So if you know ms, it wasn't hard to realise at that point stage in time, in 2021, that that's what I was writing about. But it could have been a couple of other things. Whereas since then and since my big relapse last year, when I was talking to the Ms. Nurse mentioned that a lot of they had noticed that a lot of younger people were being diagnosed with Ms. And certainly a lot of young health professionals, including students in different programs, it seems to be might be better MRIs, who knows what. But people are being diagnosed younger. I've chosen to share with some people that I have that as well and try and be more of a role model. And with some of the writing that I'm doing, I'm looking at doing an ethnography at the moment using the Ms. Poetry and pulling that, pulling that out into a little bit more of a full article. It will be very obvious to students if anybody wants to look, they'll know that I have Ms. So I'm really quite happy now for my students to know that I do. I think I can have a role to help them and support them and to show them that it's not the end of life if you are diagnosed with something, it's an adjustment, a different way of doing things.

[C]

Okay. And with that, firstly, thank you very much for joining us and I think think the poetry is fantastic. I think anyone with Ms. Will find a lot of touch points in, in that. Yeah. And the way you, you put it into the verse was I found amazing. So with that, thank you very much for joining us. Josie, Crawley.

[A]

Oh, thank you, Jeff. I've all seen you a wee PDF as well if you'd like to add it to the bottom of the podcast just of the poems in case anybody would like them and a few other ones as well that I didn't actually share but that I often refer to that are related around Ms. And loss.

[C]

Absolutely. So check out the show notes and we'll have all the links available there.

[A]

Perfect. Thank you, Jake. That was fun.

[B]

Thank you for listening to this episode of Living well with Ms. Please check out this episode's show [e-mail] podcast. You'll find useful links and bonus information there there. Don't forget to subscribe to the podcast so you never miss an episode. And please rate and review the show to help others find us. This show is made possible by the Overcoming Ms. Community. Our theme music is by Claire and Nav Dean. Our host is Jeff Alex. Our videos are edited by Lorna Greenwood and I'm the producer, Regina Beach. Have questions or ideas to share? Email us at podcast at overcomingms. Org. We'd love to hear from you. The Living well with Ms. Podcast is for private, non commercial use and exists to educate and inspire our community of listeners. We do not offer medical advice. For medical advice, please contact your doctor or other licensed healthcare professional.