00:00:00Welcome And Why Hidden Disabilities Matter
00:21:06Identity, Peer Support And Treatment Choices
ABOUT THIS EPISODE
In this episode of Sunflower Conversations, James Dunn speaks with Yvette O'Dowd, who first showed symptoms of multiple sclerosis (MS) at 32 years old and has now been living with the condition for over 30 years. An advocate and author of the children's book Granny Has Wobbly Legs, Yvette shares her experience of living with MS, exploring fatigue, brain fog, stigma, and the practical adjustments, including the Hidden Disabilities Sunflower, that help make everyday life more accessible.
• Early MS signs, diagnosis and living with uncertainty
• Hidden symptoms including fatigue, brain fog, numbness and heat sensitivity
• Managing energy through pacing and spoon theory
• The emotional impact of invisible disability and being misunderstood
• Treatment decisions, lifestyle changes and daily coping strategies
• Explaining MS to children through Granny Has Wobbly Legs
• Simple accessibility changes that make a meaningful difference
• How the Hidden Disabilities Sunflower supports understanding and confidence
Visit our website, Facebook, or Instagram for more resources.
English
United Kingdom
SHOW NOTES 🔗
TRANSCRIPT 🔗
WEBVTT
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We acknowledge and pay our respects to the traditional custodians of the lands on which we record, and especially to those who may also be living with a disability.
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Welcome to another episode where we will explore a variety of non-visible disabilities, the way in which people experience their disabilities, and discover the opportunities for society to make access and inclusion improvements that benefit everyone.
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Hi everyone, my name is James Dunn and I'm your host.
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And like many of the guests on the Sunfire Conversations, I also live with disability, including myalgic encephalomyelitis, more commonly known as chronic fatigue syndrome, and postural orthostatic tachycardia syndrome.
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On today's show, I'm joined by Yvette O'Dow.
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Yvette lives in Melbourne on the lands of the Kulin Nation.
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Yvette was 32 years old when she first showed signs of multiple sclerosis in 1995.
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She has now lived with MS for over 30 years and has experienced many challenges on her disability journey.
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Yvette has provided peer volunteer support to other people with MS and has also written a book about her experiences living with MS.
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Yvette is a passionate advocate for the Sunflower Initiative and for making positive change for anyone living with a disability.
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Yvette O'Doubt, welcome to the show.
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Thank you for having me.
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So take us back to 1995.
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What did your life look like just before you started experiencing symptoms?
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And what do you remember about the journey from first symptoms to finally getting that MS diagnosis?
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It was actually a really significant turning point for my life before the MS.
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I had just qualified as a breastfeeding counselor, I was working as a volunteer.
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My youngest child was about to head off to school.
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My oldest child was about to head off to high school.
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I was planning on going back to work and I was busy.
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I had lots of stuff happening.
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And um then one day I woke up and I had a pain in my eye, and then my vision started to fade.
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And I went and saw the doctor who sent me to a specialist and they said I had optic neuritis, which is an inflammation of the optic nerve.
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And although they didn't say I had MS at that stage, the most common cause of optic neuritis is multiple sclerosis.
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Um so they sent me away and said, you know, get on with your life.
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And then I had two more episodes of that.
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And then five years after the first episode, um I was diagnosed with MS because I had um lost feeling in my foot and that classified as multiple sclerosis.
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And life changed.
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Wow, so that's a really long time between first symptoms and diagnosis.
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Is that the same these days or was there something different then?
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No.
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So um I had to meet the criteria of two episodes and two parts of the body, which was then able to be diagnosed.
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These days they'd give you an MRI at the first sign of anything.
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A generation before, they used to put you in a hot bath and if you couldn't get out, um, they diagnosed you with multiple sclerosis because that heat fatigue was the diagnostic tool.
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So we've come a long way.
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Yeah, absolutely.
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That does sound a little bit archaic.
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But you were sort of in the middle, so it still took a little longer.
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Um, you know, going back to that time, uh, they used to not always tell the patient.
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So a man might be told that his wife had MS, but we didn't need to bother her with that.
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Wow.
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Yeah.
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So progress is is it's ongoing.
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Yeah, absolutely.
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So can you remember how you felt when you first heard the words you have MS from your specialist?
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Well, I was devastated because um everything I knew about MS was that people end up in wheelchairs.
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My great aunt had it.
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And that was that was the only memory I had of her um was seeing her in family videos, films sitting.
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She was always sitting.
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So, you know, that was the vision that I had, and I thought, well, I can't how how am I going to live this life if if I'm totally incapacitated?
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So it was terrifying.
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And I felt really cheated.
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Well, it sounds like you were really excited about embarking on this next phase of life with the kids at school and and new work opportunities for you, and it would have hit you for six.
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Yeah, and I it was so uncertain that I think with some disabilities it happens and that's what it is, and you go forward from there.
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But I was terrified I was gonna lose sight in both eyes.
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I was terrified that I might lose the ability to walk.
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You know, there's bowel and bladder um symptoms that can happen.
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There's just so many things with MS.
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It can be multiple disabilities um all at the same time and no ability to know what might happen.
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So that unpredictability would have been Yeah.
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Yeah.
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Very scary.
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Yeah, definitely.
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And still is.
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So people often see the visible parts of MS, as you said, if somebody's in a wheelchair um visually deeply affected.
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But what are some of the hidden battles that people with MS may be dealing with on a day-to-day basis?
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You're if I've heard it once, I've heard it a million times, that I don't look like I've got MS, and I often wonder how I'm failing and what I should look like.
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But I experience all the really common symptoms.
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So I live with heat fatigue.
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Um yesterday was a good example.
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I was I was doing a talk to a group of parents and I just was just a wash with sweat just pouring off me.
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And that's then my body needs to rest and sit down, and I've got no control over that.
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I also get um loss of sensation in all sorts of parts of my body, so I'll lose uh feeling in my fingertips or feeling in the soles of my feet, and then I'll also gain feelings that aren't real, so I might feel like my arm's been burned with boiling water.
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I can tell you exactly what that feels like, even though it's never happened.
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And my brain is interpreting other sensations and trying to put a picture together based on prior experience.
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So you get all these random things.
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Um the other day I just got this buzzing all down my arm.
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There was nothing there, but my brain thinks something's happening.
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So there's all these sensory things.
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I've lost the ability to taste, I've lost feeling on one side of my face.
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Um, it doesn't affect the function, so it's different to say stroke where where um you know the face will droop, but I'll have no sensation on one side of my face.
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And that might last for six weeks or so and then goes away.
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And yet I look fine.
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I am a chronic fainter um spectacularly in public, um, much to the the disturbance of other people.
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Spend a lot of time lying on the floor going, I'm okay, don't call an ambulance, I'm fine.
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Everyone's like, but the opposite of the you look fine.
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Yes, yes, yes.
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When I don't look fine, they're alarmed.
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I think most most days I probably meet someone that says, Oh, you're looking well.
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Yeah, yeah.
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And it's that awkwardness where it's like, well, I don't want to say I'm not, because that's just negative.
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But I also can't say I definitely am because that's not true.
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So it's just sort of l leads to a thing.
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Yeah.
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It's it's like you don't know don't realise how much you get asked, uh, oh, how are you?
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Like if I answer truthfully.
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Your energy levels, they're they're impacted?
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Yes, definitely.
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Um I don't know if you know about the spoon theory, but um, we've only got so many spoons we can use in a day.
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And with conditions like MS, we can use a lot of spoons just getting up and having breakfast, having a shower.
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Um, if I have a hot breakfast and a hot cup of tea and then hop in the shower too soon, the heat fatigue kicks in.
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I have to lie down for half an hour before I can get dressed.
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Um the energy becomes something that um is finite, and so you choose what to use it for.
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And um simple actions that we all do every day can just take everything out of me.
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Um so I will choose not to do things so that I can use my energy for other things.
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That makes a lot of sense.
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And it's interesting.
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I'm now remembering when I was first diagnosed with chronic fatigue syndrome, the specialist said that from an energy perspective, this is similar to MS.
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There aren't all the sensation issues, or there can be some.
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But I can completely relate to your spoons theory.
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I I see it as a battery myself, and it just doesn't get charged properly.
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Has a very small amount of charge each day, and yeah, you have to work out what you're gonna spend.
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And and just like your phone, if it's running too many background apps and it drains the battery extra fast, um, it's the same thing.
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So if I'm coming down with um a virus or something, that'll knock me out.
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I've just just come back from something I've had a cold for three weeks.
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Um my grandchildren had the same cold and they were better a few days later.
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Um, but that just knocks out my ability to do everything from making a meal to uh getting dressed.
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There's just no energy for those basic um activities of of daily life.
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I've had times when the fatigue's been so bad I can't sit upright.
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I try and I just have to keep lying back down again.
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And you can't explain it.
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It's not like being tired and needing to go to bed and have an early night.
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Um it's it's like your body just cannot function and just needs to shut down.
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Yeah, absolutely.
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Uh I can only relate to that in relation to the chronic fatigue syndrome.
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And I know a lot of people in that community tell stories of people saying you're just tired, you just need to take a few weeks off and and take it easy.
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But it's it's a pervasive, severe fatigue that doesn't go away.
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It sounds like that's what you're experiencing.
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And I guess also that would impact things like your focus and cognition memory.
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Absolutely.
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I'm shocking short-term memory.
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Um, you know, when you've got to you they send you a code, you've got to take that six digits over to the other screen.
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By the time I get back to the other screen, I can't remember any of the digits.
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So I have to go back again and try to do it digit by digit.
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And that that my memory was my greatest asset, and it's become my weakest.
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And it's just so frustrating.
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Um little things like exactly where did I park the car, um, what day is it?
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Uh was I going to see you this week or next week?
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I used to be able to retain all that stuff.
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Now, if it's if my Google in my phone doesn't know what I'm doing, I don't know what I'm doing.
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Yeah.
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I can relate to that.
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Everything is written down, isn't it?
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Everything everything that you're going to do is in your notes.
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Yeah.
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Yeah.
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Yeah.
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And I it's good to have the technology to cope.
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Absolutely.
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I will get a surprise sometimes.
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I'll be like, really?
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Oh, I've got to go to the physio.
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And I've had no working memory that that's happening today.
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So I'd I just have to rely on all of those um tech reminders like multiple times.
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These things are coming up this week, these things are coming up tomorrow, these things are coming up in the next hour.
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Just repeat, repeat, repeat.
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I get lots of surprises.
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I'm sure.
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That's a that's a good positive.
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It's a thing.
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Have you ever felt any pressure to explain or prove your symptoms to others?
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Absolutely.
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Um in that five years between starting symptoms and being diagnosed, um, I had just gone back to work and I was working five days a week, which was a lot.
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Wow.
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I was trying to follow like dietary guidelines for MS and increased exercise and all those things.
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I was also caring for my aging father who needed support and three children and you know, running a household and all these things.
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And so life was really hectic.
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And whenever I mentioned you know, to people, people I'd consider to be friends often, um, they'd like say off-handed things like, Oh, you're gonna talk yourself into it at this rate.
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Or it's just in your head.
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Well, it it is in my head because my immune system's eating my central nervous system.
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Um but you know, just insensitive or people trying to be positive and reassuring.
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Um about it it look, even even I sometimes doubt it, even with the diagnosis and treatment and evidence.
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I sometimes think, do I really?
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You know, because I don't look like someone that has MS.
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Um, so even I can start to give myself negative feedback, but other people's opinions are very powerful.
00:15:06.110 --> 00:15:10.509
So it sounds like there are lots of symptoms and and a lot of challenges that you face.
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What sort of support have you got these days to help you out, given the impact that it is having on your life?
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There's a lot of uh focus on improved living to help reduce MS attacks.
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So I have an exercise physiologist who makes me go to the gym.
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I do hydrotherapy, um, I have regular physio um and uh I see my neurologist regularly.
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I've just uh finished a two-year course of a drug treatment, and I'm told I may not need any more drug treatments for my MS as I'm getting older.
00:15:57.549 --> 00:16:07.549
Um apparently aging, your immune system's not as good as it attacking you as it is when you're younger.
00:16:07.549 --> 00:16:11.309
Well, that's positive.
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But um, it's a constant work in progress.
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You know, um exercise is really beneficial to people with MS, but exercise can create fatigue, it can lead to heat fatigue.
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Sometimes I have to abandon a session just because I've overheated and I need to lie down.
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Um eating really well is important, but eating lots of fresh fruit and vegetables is a lot of hands-on preparation.
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And at the end of a very long day, when you're feeling absolutely wiped out, it's easier to have toast.
00:16:53.149 --> 00:17:09.309
Um, so I have support workers through the NDIS, and part of what they do is um prepare my fruit and vegetables so that I can just cook them, um, so that I'm not trying to stand there chopping things up.
00:17:09.309 --> 00:17:20.670
So it's just trying to maximize my energy to do the things that I need to do to keep myself going.
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So it's like a support team in the background.
00:17:23.629 --> 00:17:26.910
Yeah, it's great that you can have that support now, particularly with the NDIS.
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Yes.
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So obviously there's been lots of challenges.
00:17:30.349 --> 00:17:40.349
Um, but it sounds like one positive that's come from the experience is that you're pretty focused on your general health that's outside of the MS, is it right?
00:17:40.670 --> 00:17:40.990
Yeah.
00:17:40.990 --> 00:17:48.910
I decided very early on that I can't control how the MS rolls out.
00:17:48.910 --> 00:17:51.789
But there's lots of health issues I can't control.
00:17:51.789 --> 00:18:03.309
Um, so uh I can be a very old person that lives with MS that hasn't died from heart disease, um, that kind of thing.
00:18:03.309 --> 00:18:11.549
Um I guess too, it it makes you more appreciative of how important our health is.
00:18:11.950 --> 00:18:12.269
Yeah.
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So I'm, you know, I'm up there with having all screening checks and I'll take every every everything that's offered to me because I'm not going to allow myself to get sick with something I might have been able to prevent.
00:18:27.629 --> 00:18:29.390
Yeah, I can definitely relate to that.
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I'm much more focused on my general health than I've ever been.
00:18:32.829 --> 00:18:35.150
And yeah, I see that as a positive.
00:18:35.150 --> 00:18:42.190
So what do people who don't live with MS do you think most often misunderstand about their condition?
00:18:42.670 --> 00:18:47.549
I've got relaxing remitting MS, which is the most common.
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That means you can have a relapse, live with it, gradually fades away, can go back to whatever normal is.
00:18:56.190 --> 00:18:58.670
Sometimes there's a bit of a deficit.
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Um people are often more aware of progressive MS, where it just steadily gets worse and worse and worse.
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So uh they don't always understand that I might not be having a relapse, but I still have MS.
00:19:16.430 --> 00:19:24.109
So all that extra stuff is bubbling away in the background, the fatigue and the brain fog and things there all the time.
00:19:24.109 --> 00:19:30.269
Um and the relapses are just when this other thing happens.
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Um so when my third grandchild was three days old, I lost feeling in the sole of my foot, which I'd had before.
00:19:40.349 --> 00:19:45.710
But over the coming days it pricked higher and higher and higher.
00:19:45.710 --> 00:19:49.150
And within two weeks it got to my belly button.
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So I had no sensation on the whole of my lower body.
00:19:53.150 --> 00:19:54.509
And that was really scary.
00:19:54.509 --> 00:19:56.509
I was like, how high can this go?
00:19:56.509 --> 00:19:58.349
Yeah, will this go away?
00:19:58.349 --> 00:20:04.430
What if this is now secondary progressive and I won't get it back?
00:20:04.430 --> 00:20:06.910
Um that was terrifying.
00:20:06.910 --> 00:20:10.670
But again, no one could see this because of the sensation.
00:20:10.670 --> 00:20:14.829
I could still walk, I could still uh stand.
00:20:14.829 --> 00:20:21.150
Um, my balance was off a bit because we rely on that sensory feedback a lot.
00:20:21.150 --> 00:20:29.629
Um, but I was having this private meltdown, and yet it still didn't look like anything was wrong.
00:20:29.629 --> 00:20:37.309
Um, and I think that's what people don't understand that it is an invisible disability.
00:20:37.309 --> 00:20:40.910
It's all happening on the inside, but it's still real.
00:20:58.750 --> 00:21:02.029
MS has been part of your life for about half of your life.
00:21:02.029 --> 00:21:06.509
How has it shaped your sense of identity and purpose?
00:21:06.829 --> 00:21:13.390
I was very, very determined right from the start that I have MS, but it doesn't have me.
00:21:13.390 --> 00:21:18.430
I saw that quote somewhere very early on, and I'm like, that's that's it.
00:21:18.430 --> 00:21:22.910
I will not be um my disease.
00:21:22.910 --> 00:21:30.750
Um, and I will not let it stop me doing the stuff that's really important to me.
00:21:30.750 --> 00:21:41.069
So I'll push through to do things with my grandchildren um because they're only kids for a short period of time, I can have MS later.
00:21:41.069 --> 00:21:50.269
Um and um I I look at everything as isn't this wonderful?
00:21:50.269 --> 00:21:57.390
I'm so glad I get to do this right now because I am aware of this thing hanging over me.
00:21:57.390 --> 00:22:08.349
And you know, if I could go back 30 years and tell myself that you know things now look a lot better than I was projecting them forward.
00:22:08.349 --> 00:22:11.150
I'd love to do that because I was worried a lot.
00:22:11.150 --> 00:22:11.549
Yeah.
00:22:11.549 --> 00:22:14.670
Um and, you know, good stuff's happened.
00:22:14.670 --> 00:22:16.910
Some stuff hasn't been able to happen.
00:22:16.910 --> 00:22:24.109
I I twice had to leave the workforce um because of uh the way it was affecting my body.
00:22:24.109 --> 00:22:29.950
Um so, you know, that didn't roll out as I might have expected.
00:22:29.950 --> 00:22:30.750
But that's okay.
00:22:30.750 --> 00:22:37.230
I've done a lot of volunteer work, which I might not have been able to do if it I'd always been full-time paid work.
00:22:37.230 --> 00:22:39.629
So, you know, swings and roundabouts.
00:22:40.029 --> 00:22:40.829
Yeah, absolutely.
00:22:40.829 --> 00:22:48.109
And that volunteer work, the MS peer support work that you do, how has that um affected your own journey?
00:22:48.109 --> 00:22:48.910
Has that helped you?
00:22:49.230 --> 00:23:03.470
Yes, because I I was uh running the local MS group, which is a whole lot of people all living with the same disease, none of whom have got the exact same disease.
00:23:03.470 --> 00:23:09.230
Um people are very, very incapacitated by it.
00:23:09.230 --> 00:23:23.950
Um other people have really functional lives, and I think sometimes we could get really bogged down in our own experience and not realize that it doesn't have to look doom and gloom.
00:23:23.950 --> 00:23:35.629
We had a lovely um boy meets girl in my MS group, um, and they got married and it was just lovely.
00:23:35.629 --> 00:23:37.069
They found each other.
00:23:37.069 --> 00:23:43.629
Um so we we offered a matchmaking service on top of everything else.
00:23:43.629 --> 00:24:04.990
Um but yeah, it's it's about you can sit with a group of people that have the same condition as you, and you can complain about the things without people trying to reassure you or make you feel better or or downplay it, or all the other things that we do when we're trying to make someone feel better.
00:24:04.990 --> 00:24:10.990
Um we'll just all sit around and talk about the ridiculousness of of this condition.
00:24:10.990 --> 00:24:15.069
Um and peer support is exactly that.
00:24:15.069 --> 00:24:20.509
It's I my experience and your experience are walking along together.
00:24:20.509 --> 00:24:21.869
So let's share it.
00:24:22.269 --> 00:24:25.470
Yeah, that's fantastic that you've had such good experiences there.
00:24:25.470 --> 00:24:27.150
And it is very therapeutic.
00:24:27.150 --> 00:24:34.349
And I'm sure you probably pick up tips from other people on potential treatments or things that just make things easier.
00:24:34.750 --> 00:24:40.589
Yes, even just like, oh, did you know you could apply for this or you could get this sort of help, things like that.
00:24:40.589 --> 00:24:45.470
Um, I guess it's insider knowledge um sometimes.
00:24:45.470 --> 00:24:50.670
Um, but we can talk about how different drugs have affected us.
00:24:50.670 --> 00:25:04.349
Um because we do have a range of treatments available now, but you've often got to choose between two or three that are presented to you, and you just don't know how they might affect you.
00:25:04.349 --> 00:25:12.430
Um, so talking to people who have used them means you've got a more realistic picture of what it might look like for you.
00:25:12.670 --> 00:25:31.470
Yeah, and I think also because there are a few different options around, I find sometimes the sequencing of trying those treatments can be informed by other people in the community if you've hear other people saying, look, this one hasn't really worked for me and you can't really find too many people who have, then you might put that third or fourth on your list of things to try.
00:25:31.789 --> 00:25:39.309
And that's really helpful because trying things takes a lot of effort and you know, these are um quite invasive drugs.
00:25:39.309 --> 00:25:45.869
Let's let's not try, you know, a string of them in a row if we can be more selective about what we take.
00:25:47.629 --> 00:25:51.549
You mentioned before about wanting to talk to your younger self.
00:25:51.549 --> 00:26:03.150
So if someone listening to us today has just been diagnosed with MS recently and is frightened about what their future might look like, what would you want them to hear?
00:26:03.710 --> 00:26:04.829
Don't panic.
00:26:04.829 --> 00:26:07.309
Okay, just take a breath.
00:26:07.309 --> 00:26:09.869
Um, it's not a catastrophe.
00:26:09.869 --> 00:26:16.829
Um and it's a really good time to have a condition like MS.
00:26:16.829 --> 00:26:24.990
Um the the treatments that we have now, the goal is that um you don't have a relapse.
00:26:24.990 --> 00:26:32.910
Um most of them are offering like a 50% reduction in relapses.
00:26:32.910 --> 00:26:40.509
But the goal is really if if you have a relapse in that drug's maybe not the best one for you, so we'll try a different one.
00:26:40.509 --> 00:26:44.910
Well, that wasn't that wasn't even on the radar.
00:26:44.910 --> 00:26:54.349
We now have some really strong evidence of what might lead to MS developing in the first place.
00:26:54.349 --> 00:26:59.549
So they're they're starting to use words like cure or prevention.
00:26:59.549 --> 00:27:04.509
Um so it it's it's not what it used to be.
00:27:04.509 --> 00:27:13.150
And um it's scary, but uh it's not as scary as it was in the past.
00:27:13.470 --> 00:27:14.670
Yeah, that's a real positive.
00:27:14.670 --> 00:27:20.349
Is there something that you can still do today that you once worried that MS would take away from you?
00:27:20.910 --> 00:27:25.150
I really was worried about my vision.
00:27:25.150 --> 00:27:39.390
Um so by having three episodes like back to back, there was a really strong chance that another one would come along and I wouldn't get the return of my vision.
00:27:39.390 --> 00:27:42.509
Um that's not happened.
00:27:42.509 --> 00:27:49.710
I've I've not had um any more optic neuritis since last century.
00:27:49.710 --> 00:28:05.069
Um, so uh I was really scared that um I'm a visual person, so the thought of not being able to see, not being able to read, not being able to take photos, these are things that are really part of who I am.
00:28:05.069 --> 00:28:06.430
And that was scary.
00:28:06.430 --> 00:28:14.190
I would have been more comfortable losing the ability to walk than the ability to see, as it turns out.
00:28:14.589 --> 00:28:18.509
So you've written a book called Granny Has Wobbly Legs.
00:28:18.509 --> 00:28:23.710
Can you tell us a bit about the book and what inspired you to share your story in book form?
00:28:24.509 --> 00:28:34.990
There's a lot of groundhog day in life, and my grandchildren are the same age spaces and gender that my children were.
00:28:34.990 --> 00:28:41.710
So I had girl, girl, boy, and my daughters had girl, girl, boy, and they're the same age gaps.
00:28:41.710 --> 00:28:51.710
And so I found myself explaining to another generation why these things were part of my life.
00:28:51.710 --> 00:29:05.390
Um, and uh trying to reassure the children that this is okay and not scary, but my body does some really silly things.
00:29:05.390 --> 00:29:12.670
Um, and so I I focused on describing these things in ways that they would understand.
00:29:12.670 --> 00:29:28.349
And one that we've come up with that's just become part of how we communicate now is if everybody throws questions at me and demands all at the same time, I describe it as you you're all throwing ping pong balls at me.
00:29:28.349 --> 00:29:33.230
Um, because it just feels like I'm being bombarded and my brain just can't cope with that.
00:29:33.230 --> 00:29:56.349
So, so uh I've found ways to explain how I experience these different symptoms, but also to reassure them that it's all a bit funny and it's not something to be scared of and to just try and normalize it for them.
00:29:56.349 --> 00:30:05.150
Um I've explained that you know the cable on my charger is a bit dodgy, so the messages don't always get through.
00:30:05.150 --> 00:30:07.470
Well, I couldn't tell my own children that.
00:30:07.470 --> 00:30:10.109
So technology's been helpful there.
00:30:10.109 --> 00:30:15.150
They understand that I need to recharge my battery more often.
00:30:15.150 --> 00:30:27.789
Um, so things like that have allowed me to help them to understand and to do it without frightening them because children are scared of what they can't understand.
00:30:27.789 --> 00:30:33.950
Um, and they're scared of what might happen, they're scared that it might happen to them.
00:30:33.950 --> 00:30:39.789
Um, and they worry about what nobody tells them.
00:30:39.789 --> 00:30:43.549
So we need to just be very matter of fact.
00:30:43.549 --> 00:30:52.430
Sometimes my legs are wobbly, um, sometimes my body just overheats for no reason.
00:30:52.430 --> 00:30:56.269
Um, sometimes I can't remember what I was talking about.
00:30:56.269 --> 00:30:59.549
Sometimes I just need to sit down or lie down.
00:30:59.549 --> 00:31:04.829
Um, and they just understand that that's part of my my brain being silly.
00:31:04.829 --> 00:31:16.670
Um and I thought, well, if I can help my grandchildren understand, then I can also help other people's children understand what it might look like for them.
00:31:17.150 --> 00:31:17.629
That's great.
00:31:17.629 --> 00:31:24.190
So you you've really helped to normalize condition, as you said, so they're not frightened.
00:31:24.190 --> 00:31:31.309
And I love your analogies there with the um charging cable being frayed and the and the and the battery.
00:31:31.309 --> 00:31:33.069
That's a great way of explaining that to me.
00:31:33.629 --> 00:31:38.910
Sorry, technology has helped me explain it more easily to a second generation.
00:31:38.910 --> 00:31:44.190
Who knows what I'll be able to use for my great-grandchildren.
00:31:44.190 --> 00:31:48.910
Maybe I'll just explain to them that this is a condition nobody gets anymore.
00:31:49.309 --> 00:31:50.430
That would be great.
00:31:50.430 --> 00:31:52.349
That's the dream, isn't it?
00:31:52.349 --> 00:31:59.390
So obviously your peer support volunteering has helped you on your journey.
00:31:59.390 --> 00:32:00.910
Sounds like the book probably has as well.
00:32:00.910 --> 00:32:03.470
Just again, part of that therapy for yourself.
00:32:03.950 --> 00:32:04.430
Yeah.
00:32:04.430 --> 00:32:05.390
Yeah.
00:32:05.390 --> 00:32:19.390
Um, I've also um had counselling with a psychologist to just help to not be angry with yourself for this situation.
00:32:19.390 --> 00:32:25.150
When you've got um an autoimmune disorder, it's no one to blame.
00:32:25.150 --> 00:32:28.349
The enemy is your body.
00:32:28.349 --> 00:32:35.309
Um and it it thinks it's doing the right thing, but it's just completely misread the situation.
00:32:35.309 --> 00:32:46.349
Um, so there's no you you if you get angry, it's just angry with you, and that doesn't do any good at all.
00:32:46.349 --> 00:32:49.869
I can be angry at the situation I'm in.
00:32:49.869 --> 00:32:52.190
Um, but there's no one to blame.
00:32:52.190 --> 00:32:54.349
I didn't make this happen to myself.
00:32:54.349 --> 00:32:57.309
Nothing I did or didn't do made this happen.
00:32:57.309 --> 00:33:02.109
You've just got to be able to work your way through those feelings sometimes.
00:33:02.589 --> 00:33:15.710
And it's really good that you've got the support to help you do that because it's hard sometimes to be able to process those thoughts and having a third person objectively look at it, particularly someone trained like a psychologist, is is great.
00:33:15.710 --> 00:33:17.470
I've certainly benefited from that as well.
00:33:17.470 --> 00:33:27.309
So one of our podcast community members has a question, which is what are your favorite accommodations or accessibility measures that have helped you with MS?
00:33:27.710 --> 00:33:28.190
Do you know?
00:33:28.190 --> 00:33:35.470
Um, it's simple things that may not look like they're disability specific.
00:33:35.470 --> 00:33:38.589
Gosh, I love public seating.
00:33:39.470 --> 00:33:39.789
Absolutely.
00:33:40.109 --> 00:33:47.390
Oh my God, if I need to sit down and there's nowhere for me to sit down but the dirt under a tree.
00:33:47.710 --> 00:33:49.390
Um it's raining.
00:33:49.390 --> 00:33:49.950
That's right.
00:33:50.109 --> 00:33:51.470
Oh, it's raining.
00:33:51.470 --> 00:33:58.029
Um, yeah, we go places and um all the all the seats are in the sun.
00:33:58.029 --> 00:34:01.710
Well now I get to sit down, but I'm going to overheat.
00:34:01.710 --> 00:34:09.470
Um, so just really well thought out public seating can make such a difference.
00:34:09.470 --> 00:34:20.590
Um, air conditioning, um, buildings that are too hot and stuffy can really be feel quite threatening.
00:34:20.590 --> 00:34:28.350
Um and I will often use my my wheelie walk-up when we go out for a day.
00:34:28.350 --> 00:34:30.910
Um it's amazing sometimes.
00:34:30.910 --> 00:34:36.510
We still have shops you can't maneuver around um with a mobility aid.
00:34:36.510 --> 00:34:43.710
And it's not true anything other than lack of awareness.
00:34:43.710 --> 00:34:48.830
Um, the people have set those spaces up have no idea that you can't fit through.
00:34:48.830 --> 00:34:59.950
Um and I've walked out of shops that I really would have liked to have browsed and maybe bought something, but I can't work walk around the space.
00:34:59.950 --> 00:35:08.430
So just those kinds of things, they're not big infrastructure that that needs lots of investment.
00:35:08.430 --> 00:35:15.310
Um, it's just looking at the world through the lens of someone who might just need a little bit of extra support.
00:35:15.790 --> 00:35:20.270
Absolutely, which means you need people who have those challenges involved in that design process.
00:35:20.270 --> 00:35:21.790
And I think that's happening more.
00:35:21.790 --> 00:35:26.510
And I'm sure that's the reason why these accommodations are getting better.
00:35:26.510 --> 00:35:32.270
I absolutely love your public seating uh tip, and I think it's probably mine as well.
00:35:32.270 --> 00:35:44.190
And I know one experience I have with supermarkets, I think it's great that they've now had for a few years seating on the outside of the checkouts so that if you need a break, you can sit there.
00:35:44.190 --> 00:35:46.990
It'd be great if they had them on the inside of the supermarket too.
00:35:46.990 --> 00:35:49.630
So you could have a break while you're doing some shopping.
00:35:50.110 --> 00:35:52.110
No, um that's a big walk.
00:35:52.430 --> 00:35:52.990
Yeah, that's right.
00:35:53.950 --> 00:35:58.510
You know, um it's it's just no one thinks of it.
00:35:58.510 --> 00:36:00.430
And we we need to ask for it.
00:36:00.430 --> 00:36:05.870
We need to give them that feedback and say, hey, did you know sometimes we need to sit down?
00:36:06.350 --> 00:36:07.790
Yeah, it's two-way, isn't it?
00:36:07.950 --> 00:36:08.270
Yeah.
00:36:08.510 --> 00:36:14.510
So can you tell us about your connection with the Sunflare Initiative and what made you feel it was something you wanted to be part of?
00:36:14.830 --> 00:36:22.750
I first saw it, someone was doing a promotion somewhere, and I was like, oh wow, that's that's me.
00:36:22.750 --> 00:36:27.870
Um and uh I embraced it straight away.
00:36:27.870 --> 00:36:35.470
And it's been really interesting to watch the awareness of it growing.
00:36:35.470 --> 00:36:52.110
Um even uh last Christmas we had a local event and um we were going to watch a show in the theatre, and the woman that saw my sunflower lanyard almost grabbed me by the arm and whisked me into a seat.
00:36:52.110 --> 00:36:54.830
It was like, thank you, okay.
00:36:54.830 --> 00:36:57.710
Um, we didn't need to have that conversation.
00:36:57.710 --> 00:37:00.510
Um, you don't need to explain yourself.
00:37:00.510 --> 00:37:15.950
And I want to reach a stage where everybody recognizes that symbol instantly and knows that despite appearances, um, you might need something extra.
00:37:15.950 --> 00:37:20.350
You may need to sit down on the train.
00:37:20.350 --> 00:37:30.910
Um, you might need to um sit closer to an exit or sit under the air conditioner, or you know, you don't have to explain all the why.
00:37:30.910 --> 00:37:33.070
You can just explain the what.
00:37:33.070 --> 00:37:37.310
And I think it's just been a really great experience so far.
00:37:37.710 --> 00:37:44.670
I think you you've hit the nail on the head there with one of the big benefits, which is not needing to explain yourself, which is exhausting.
00:37:44.670 --> 00:37:49.070
Um, can be demoralizing for some people, some occasions.
00:37:49.070 --> 00:37:50.510
And I think that's one of its big strengths.
00:37:50.510 --> 00:37:52.750
You mentioned the train there as an example.
00:37:52.750 --> 00:37:58.270
Has there been any other specific moments where wearing the sunflower made a real difference to you?
00:37:58.590 --> 00:38:14.590
Um, I think when I am out and about, and sometimes I will see people look at it and smile, which isn't making any accommodations, but it's just like I see you and I I understand.
00:38:14.590 --> 00:38:20.670
And um it feels like then that person's an ally out in the world.
00:38:20.670 --> 00:38:31.790
So if I did need support from somebody and I was out without you know my family or or anyone, that there are going to be people who will be aware of what it is.
00:38:31.790 --> 00:38:36.990
And if I show signs of needing help, um they would be the people to step forward.
00:38:36.990 --> 00:38:46.510
So I think it's just that it's like a global understanding that not every disability is really, really obvious.
00:38:46.510 --> 00:38:50.750
And that the ones that aren't obvious are still valid.
00:38:51.150 --> 00:38:51.550
Yep.
00:38:51.950 --> 00:38:53.870
And can be as significant.
00:38:54.270 --> 00:38:55.150
Yeah, absolutely.
00:38:55.150 --> 00:38:57.550
And you're absolutely right about the goal.
00:38:57.550 --> 00:39:06.190
I think it is to make sure that the the sunflower symbol is as well recognized as the wheelchair accessibility symbol in the future.
00:39:06.190 --> 00:39:07.550
And I think that's achievable.
00:39:07.550 --> 00:39:18.350
It's it's growing rapidly, and I'm sure you experience this as well, that it's just more and more people every sort of month that passes that recognizes and give you the smile or come up to you to see if you need help.
00:39:18.510 --> 00:39:19.470
And it's great.
00:39:20.030 --> 00:39:20.910
Always our final question.
00:39:20.910 --> 00:39:32.910
You've given a few examples already, but what's one small change that individuals or organizations could make tomorrow to improve the lives of people with MS or other life-changing non-visible illnesses?
00:39:33.550 --> 00:39:40.510
Being aware that looks are deceiving.
00:39:40.510 --> 00:39:44.190
Just don't assume that everybody is able-bodied.
00:39:44.190 --> 00:39:46.430
That's that's all you need to do.
00:39:46.430 --> 00:39:50.030
You don't need to change your your behavior.
00:39:50.030 --> 00:40:00.350
You don't have to do anything differently, but just go about your normal life, expecting that you know, some people are dealing with something that you can't see.
00:40:00.350 --> 00:40:01.710
And just be kind.
00:40:02.750 --> 00:40:05.870
That's a really simple tip, but a a really good one.
00:40:05.870 --> 00:40:14.910
I think um, like you've said a few times today, there's some really simple things that can um be done um and approaches people can take that make a big difference to other people.
00:40:15.230 --> 00:40:20.670
Yeah, there's one simple one that's come in in recent years on our train system.
00:40:20.670 --> 00:40:24.430
Um, there are chairs that are a different colour.
00:40:24.430 --> 00:40:38.190
Um the standard ones are blue, and then these ones are orange, and the expectation is that you would give up an orange seat for a person that had additional needs to sit down.
00:40:38.190 --> 00:40:53.790
Well, that combined with the lanyard, um, they they could put on um the signage um the the sunflower, and then you wouldn't have to even have the conversation say, excuse me, do you mind if I sit down?
00:40:53.790 --> 00:40:56.270
Um, that would be part of the awareness.
00:40:56.270 --> 00:40:58.830
And nobody would have to do anything differently.
00:40:58.830 --> 00:41:02.510
It would just be integrating that into the existing system.
00:41:02.990 --> 00:41:03.390
Absolutely.
00:41:03.390 --> 00:41:07.630
I think that is the direction it's heading in, and I'm hoping that that will happen soon enough.
00:41:07.630 --> 00:41:11.550
Thanks, Yvette, so much for joining us today on the podcast.
00:41:11.550 --> 00:41:13.150
It's been great talking to you.
00:41:13.150 --> 00:41:18.190
Loved your tips, um, particularly those really simple ones that everyone can be aware of.
00:41:18.190 --> 00:41:23.870
I love that you haven't made MS become the sort of headline of your life story.
00:41:23.870 --> 00:41:27.550
Um, and you've got some great tips about how to make sure that it doesn't.
00:41:27.550 --> 00:41:35.230
I also love how you've shared your experiences with the next generation and you're communicating to them how it impacts you.
00:41:35.230 --> 00:41:46.990
Because I'm sure that will help in their relationship with you, but they'll apply that across the border in life to other people with challenges that they can't see or don't understand.
00:41:46.990 --> 00:41:49.870
So that's having a real positive impact.
00:41:49.870 --> 00:41:52.270
So well done on on the book.
00:41:52.270 --> 00:41:53.390
That's great.
00:41:53.390 --> 00:41:53.950
Thank you.
00:41:53.950 --> 00:42:02.030
And and all your support to um your fellow um MS people over the years.
00:42:02.030 --> 00:42:04.990
I'm sure that's been having a big positive impact on a lot of people.
00:42:05.310 --> 00:42:05.790
Thank you.
00:42:05.790 --> 00:42:07.550
It's been a ride.
00:42:08.270 --> 00:42:10.910
Thank you for joining us for another Sunflower Conversation.
00:42:10.910 --> 00:42:27.390
Please keep the conversation going via our website, hdsunflower.com forward slash AU, on Facebook at Hidden DisabilitiesANZ, on Instagram at hidden disabilities underscore ANZ, and on LinkedIn at Hidden Disabilities Sunflower-Australia and New Zealand.
00:42:27.390 --> 00:42:33.630
You can also visit our website if your organisation or an organisation you know is interested in becoming a Sunflower member.
00:42:33.630 --> 00:42:43.390
If you would like to submit a question for one of our guests to answer on a future episode, please direct message us on socials or email us at hds events at Bailey House.
00:42:43.390 --> 00:42:48.510
That's B-A-Y-L-E-Y-H-O-U-S E.org.au.
00:42:48.510 --> 00:42:56.910
Please help, have patience, show kindness to others, and join us again soon, making the invisible visible with the Hidden Disability Sunflower.
00:00:08.669 --> 00:00:16.829
We acknowledge and pay our respects to the traditional custodians of the lands on which we record, and especially to those who may also be living with a disability.
00:00:16.829 --> 00:00:33.390
Welcome to another episode where we will explore a variety of non-visible disabilities, the way in which people experience their disabilities, and discover the opportunities for society to make access and inclusion improvements that benefit everyone.
00:00:33.390 --> 00:00:36.829
Hi everyone, my name is James Dunn and I'm your host.
00:00:36.829 --> 00:00:48.429
And like many of the guests on the Sunfire Conversations, I also live with disability, including myalgic encephalomyelitis, more commonly known as chronic fatigue syndrome, and postural orthostatic tachycardia syndrome.
00:00:48.429 --> 00:01:08.829
On today's show, I'm joined by Yvette O'Dow.
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Yvette lives in Melbourne on the lands of the Kulin Nation.
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Yvette was 32 years old when she first showed signs of multiple sclerosis in 1995.
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She has now lived with MS for over 30 years and has experienced many challenges on her disability journey.
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Yvette has provided peer volunteer support to other people with MS and has also written a book about her experiences living with MS.
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Yvette is a passionate advocate for the Sunflower Initiative and for making positive change for anyone living with a disability.
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Yvette O'Doubt, welcome to the show.
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Thank you for having me.
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So take us back to 1995.
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What did your life look like just before you started experiencing symptoms?
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And what do you remember about the journey from first symptoms to finally getting that MS diagnosis?
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It was actually a really significant turning point for my life before the MS.
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I had just qualified as a breastfeeding counselor, I was working as a volunteer.
00:02:05.230 --> 00:02:08.829
My youngest child was about to head off to school.
00:02:08.829 --> 00:02:11.789
My oldest child was about to head off to high school.
00:02:11.789 --> 00:02:16.270
I was planning on going back to work and I was busy.
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I had lots of stuff happening.
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And um then one day I woke up and I had a pain in my eye, and then my vision started to fade.
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And I went and saw the doctor who sent me to a specialist and they said I had optic neuritis, which is an inflammation of the optic nerve.
00:02:39.870 --> 00:02:49.870
And although they didn't say I had MS at that stage, the most common cause of optic neuritis is multiple sclerosis.
00:02:49.870 --> 00:02:55.310
Um so they sent me away and said, you know, get on with your life.
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And then I had two more episodes of that.
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And then five years after the first episode, um I was diagnosed with MS because I had um lost feeling in my foot and that classified as multiple sclerosis.
00:03:12.829 --> 00:03:15.629
And life changed.
00:03:15.949 --> 00:03:20.829
Wow, so that's a really long time between first symptoms and diagnosis.
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Is that the same these days or was there something different then?
00:03:25.069 --> 00:03:25.310
No.
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So um I had to meet the criteria of two episodes and two parts of the body, which was then able to be diagnosed.
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These days they'd give you an MRI at the first sign of anything.
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A generation before, they used to put you in a hot bath and if you couldn't get out, um, they diagnosed you with multiple sclerosis because that heat fatigue was the diagnostic tool.
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So we've come a long way.
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Yeah, absolutely.
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That does sound a little bit archaic.
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But you were sort of in the middle, so it still took a little longer.
00:04:02.590 --> 00:04:07.949
Um, you know, going back to that time, uh, they used to not always tell the patient.
00:04:07.949 --> 00:04:13.469
So a man might be told that his wife had MS, but we didn't need to bother her with that.
00:04:13.789 --> 00:04:14.349
Wow.
00:04:14.590 --> 00:04:15.149
Yeah.
00:04:15.149 --> 00:04:18.829
So progress is is it's ongoing.
00:04:19.149 --> 00:04:20.189
Yeah, absolutely.
00:04:20.189 --> 00:04:26.589
So can you remember how you felt when you first heard the words you have MS from your specialist?
00:04:26.909 --> 00:04:34.029
Well, I was devastated because um everything I knew about MS was that people end up in wheelchairs.
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My great aunt had it.
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And that was that was the only memory I had of her um was seeing her in family videos, films sitting.
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She was always sitting.
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So, you know, that was the vision that I had, and I thought, well, I can't how how am I going to live this life if if I'm totally incapacitated?
00:04:59.709 --> 00:05:01.069
So it was terrifying.
00:05:01.069 --> 00:05:02.829
And I felt really cheated.
00:05:03.389 --> 00:05:12.029
Well, it sounds like you were really excited about embarking on this next phase of life with the kids at school and and new work opportunities for you, and it would have hit you for six.
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Yeah, and I it was so uncertain that I think with some disabilities it happens and that's what it is, and you go forward from there.
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But I was terrified I was gonna lose sight in both eyes.
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I was terrified that I might lose the ability to walk.
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You know, there's bowel and bladder um symptoms that can happen.
00:05:37.870 --> 00:05:40.349
There's just so many things with MS.
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It can be multiple disabilities um all at the same time and no ability to know what might happen.
00:05:51.310 --> 00:05:53.870
So that unpredictability would have been Yeah.
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Yeah.
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Very scary.
00:05:55.870 --> 00:05:57.550
Yeah, definitely.
00:05:57.550 --> 00:05:58.829
And still is.
00:05:59.629 --> 00:06:08.269
So people often see the visible parts of MS, as you said, if somebody's in a wheelchair um visually deeply affected.
00:06:08.269 --> 00:06:14.909
But what are some of the hidden battles that people with MS may be dealing with on a day-to-day basis?
00:06:15.389 --> 00:06:23.550
You're if I've heard it once, I've heard it a million times, that I don't look like I've got MS, and I often wonder how I'm failing and what I should look like.
00:06:23.550 --> 00:06:27.310
But I experience all the really common symptoms.
00:06:27.310 --> 00:06:29.230
So I live with heat fatigue.
00:06:29.230 --> 00:06:31.949
Um yesterday was a good example.
00:06:31.949 --> 00:06:41.310
I was I was doing a talk to a group of parents and I just was just a wash with sweat just pouring off me.
00:06:41.310 --> 00:06:47.469
And that's then my body needs to rest and sit down, and I've got no control over that.
00:06:47.469 --> 00:07:07.629
I also get um loss of sensation in all sorts of parts of my body, so I'll lose uh feeling in my fingertips or feeling in the soles of my feet, and then I'll also gain feelings that aren't real, so I might feel like my arm's been burned with boiling water.
00:07:07.629 --> 00:07:11.550
I can tell you exactly what that feels like, even though it's never happened.
00:07:11.550 --> 00:07:22.909
And my brain is interpreting other sensations and trying to put a picture together based on prior experience.
00:07:22.909 --> 00:07:25.469
So you get all these random things.
00:07:25.469 --> 00:07:29.550
Um the other day I just got this buzzing all down my arm.
00:07:29.550 --> 00:07:34.110
There was nothing there, but my brain thinks something's happening.
00:07:34.110 --> 00:07:36.110
So there's all these sensory things.
00:07:36.110 --> 00:07:41.550
I've lost the ability to taste, I've lost feeling on one side of my face.
00:07:41.550 --> 00:07:52.430
Um, it doesn't affect the function, so it's different to say stroke where where um you know the face will droop, but I'll have no sensation on one side of my face.
00:07:52.430 --> 00:07:56.269
And that might last for six weeks or so and then goes away.
00:07:56.269 --> 00:07:58.110
And yet I look fine.
00:07:58.110 --> 00:08:08.589
I am a chronic fainter um spectacularly in public, um, much to the the disturbance of other people.
00:08:08.589 --> 00:08:13.870
Spend a lot of time lying on the floor going, I'm okay, don't call an ambulance, I'm fine.
00:08:15.389 --> 00:08:20.430
Everyone's like, but the opposite of the you look fine.
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Yes, yes, yes.
00:08:22.029 --> 00:08:25.069
When I don't look fine, they're alarmed.
00:08:25.550 --> 00:08:29.870
I think most most days I probably meet someone that says, Oh, you're looking well.
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Yeah, yeah.
00:08:31.469 --> 00:08:35.950
And it's that awkwardness where it's like, well, I don't want to say I'm not, because that's just negative.
00:08:35.950 --> 00:08:39.710
But I also can't say I definitely am because that's not true.
00:08:39.710 --> 00:08:42.189
So it's just sort of l leads to a thing.
00:08:42.669 --> 00:08:43.069
Yeah.
00:08:43.069 --> 00:08:48.509
It's it's like you don't know don't realise how much you get asked, uh, oh, how are you?
00:08:48.509 --> 00:08:50.830
Like if I answer truthfully.
00:08:51.309 --> 00:08:53.870
Your energy levels, they're they're impacted?
00:08:54.189 --> 00:08:55.549
Yes, definitely.
00:08:55.549 --> 00:09:02.750
Um I don't know if you know about the spoon theory, but um, we've only got so many spoons we can use in a day.
00:09:02.750 --> 00:09:11.710
And with conditions like MS, we can use a lot of spoons just getting up and having breakfast, having a shower.
00:09:11.710 --> 00:09:18.830
Um, if I have a hot breakfast and a hot cup of tea and then hop in the shower too soon, the heat fatigue kicks in.
00:09:18.830 --> 00:09:21.950
I have to lie down for half an hour before I can get dressed.
00:09:21.950 --> 00:09:32.750
Um the energy becomes something that um is finite, and so you choose what to use it for.
00:09:32.750 --> 00:09:40.429
And um simple actions that we all do every day can just take everything out of me.
00:09:40.429 --> 00:09:46.509
Um so I will choose not to do things so that I can use my energy for other things.
00:09:47.549 --> 00:09:48.750
That makes a lot of sense.
00:09:48.750 --> 00:09:50.110
And it's interesting.
00:09:50.110 --> 00:09:58.350
I'm now remembering when I was first diagnosed with chronic fatigue syndrome, the specialist said that from an energy perspective, this is similar to MS.
00:09:58.350 --> 00:10:02.189
There aren't all the sensation issues, or there can be some.
00:10:02.189 --> 00:10:05.470
But I can completely relate to your spoons theory.
00:10:05.470 --> 00:10:11.149
I I see it as a battery myself, and it just doesn't get charged properly.
00:10:11.149 --> 00:10:15.629
Has a very small amount of charge each day, and yeah, you have to work out what you're gonna spend.
00:10:16.110 --> 00:10:24.669
And and just like your phone, if it's running too many background apps and it drains the battery extra fast, um, it's the same thing.
00:10:24.669 --> 00:10:29.870
So if I'm coming down with um a virus or something, that'll knock me out.
00:10:29.870 --> 00:10:33.629
I've just just come back from something I've had a cold for three weeks.
00:10:33.629 --> 00:10:40.029
Um my grandchildren had the same cold and they were better a few days later.
00:10:40.029 --> 00:10:49.069
Um, but that just knocks out my ability to do everything from making a meal to uh getting dressed.
00:10:49.069 --> 00:10:58.509
There's just no energy for those basic um activities of of daily life.
00:10:58.509 --> 00:11:03.309
I've had times when the fatigue's been so bad I can't sit upright.
00:11:03.309 --> 00:11:07.789
I try and I just have to keep lying back down again.
00:11:07.789 --> 00:11:09.230
And you can't explain it.
00:11:09.230 --> 00:11:12.509
It's not like being tired and needing to go to bed and have an early night.
00:11:12.509 --> 00:11:21.309
Um it's it's like your body just cannot function and just needs to shut down.
00:11:21.870 --> 00:11:22.509
Yeah, absolutely.
00:11:22.509 --> 00:11:26.750
Uh I can only relate to that in relation to the chronic fatigue syndrome.
00:11:26.750 --> 00:11:34.509
And I know a lot of people in that community tell stories of people saying you're just tired, you just need to take a few weeks off and and take it easy.
00:11:34.509 --> 00:11:39.950
But it's it's a pervasive, severe fatigue that doesn't go away.
00:11:39.950 --> 00:11:42.429
It sounds like that's what you're experiencing.
00:11:42.429 --> 00:11:48.669
And I guess also that would impact things like your focus and cognition memory.
00:11:49.149 --> 00:11:49.789
Absolutely.
00:11:49.789 --> 00:11:52.350
I'm shocking short-term memory.
00:11:52.350 --> 00:12:00.990
Um, you know, when you've got to you they send you a code, you've got to take that six digits over to the other screen.
00:12:00.990 --> 00:12:04.990
By the time I get back to the other screen, I can't remember any of the digits.
00:12:04.990 --> 00:12:08.669
So I have to go back again and try to do it digit by digit.
00:12:08.669 --> 00:12:16.750
And that that my memory was my greatest asset, and it's become my weakest.
00:12:16.750 --> 00:12:20.029
And it's just so frustrating.
00:12:20.029 --> 00:12:27.389
Um little things like exactly where did I park the car, um, what day is it?
00:12:27.389 --> 00:12:31.389
Uh was I going to see you this week or next week?
00:12:31.389 --> 00:12:33.389
I used to be able to retain all that stuff.
00:12:33.389 --> 00:12:40.990
Now, if it's if my Google in my phone doesn't know what I'm doing, I don't know what I'm doing.
00:12:42.429 --> 00:12:43.069
Yeah.
00:12:43.069 --> 00:12:44.590
I can relate to that.
00:12:44.590 --> 00:12:45.950
Everything is written down, isn't it?
00:12:45.950 --> 00:12:49.470
Everything everything that you're going to do is in your notes.
00:12:49.470 --> 00:12:50.429
Yeah.
00:12:50.429 --> 00:12:50.669
Yeah.
00:12:50.909 --> 00:12:51.149
Yeah.
00:12:51.309 --> 00:12:53.389
And I it's good to have the technology to cope.
00:12:53.789 --> 00:12:54.350
Absolutely.
00:12:54.350 --> 00:12:56.110
I will get a surprise sometimes.
00:12:56.110 --> 00:12:57.149
I'll be like, really?
00:12:57.149 --> 00:12:59.950
Oh, I've got to go to the physio.
00:12:59.950 --> 00:13:04.429
And I've had no working memory that that's happening today.
00:13:04.429 --> 00:13:12.590
So I'd I just have to rely on all of those um tech reminders like multiple times.
00:13:12.590 --> 00:13:19.149
These things are coming up this week, these things are coming up tomorrow, these things are coming up in the next hour.
00:13:19.149 --> 00:13:22.189
Just repeat, repeat, repeat.
00:13:22.189 --> 00:13:24.750
I get lots of surprises.
00:13:26.509 --> 00:13:27.789
I'm sure.
00:13:27.789 --> 00:13:30.269
That's a that's a good positive.
00:13:30.669 --> 00:13:32.110
It's a thing.
00:13:32.750 --> 00:13:36.669
Have you ever felt any pressure to explain or prove your symptoms to others?
00:13:37.149 --> 00:13:38.110
Absolutely.
00:13:38.110 --> 00:13:51.230
Um in that five years between starting symptoms and being diagnosed, um, I had just gone back to work and I was working five days a week, which was a lot.
00:13:51.710 --> 00:13:52.350
Wow.
00:13:52.669 --> 00:14:01.389
I was trying to follow like dietary guidelines for MS and increased exercise and all those things.
00:14:01.389 --> 00:14:10.350
I was also caring for my aging father who needed support and three children and you know, running a household and all these things.
00:14:10.350 --> 00:14:12.750
And so life was really hectic.
00:14:12.750 --> 00:14:25.629
And whenever I mentioned you know, to people, people I'd consider to be friends often, um, they'd like say off-handed things like, Oh, you're gonna talk yourself into it at this rate.
00:14:25.629 --> 00:14:27.230
Or it's just in your head.
00:14:27.230 --> 00:14:33.710
Well, it it is in my head because my immune system's eating my central nervous system.
00:14:33.710 --> 00:14:41.549
Um but you know, just insensitive or people trying to be positive and reassuring.
00:14:41.549 --> 00:14:52.509
Um about it it look, even even I sometimes doubt it, even with the diagnosis and treatment and evidence.
00:14:52.509 --> 00:14:54.669
I sometimes think, do I really?
00:14:54.669 --> 00:14:58.029
You know, because I don't look like someone that has MS.
00:14:58.029 --> 00:15:05.710
Um, so even I can start to give myself negative feedback, but other people's opinions are very powerful.
00:15:06.110 --> 00:15:10.509
So it sounds like there are lots of symptoms and and a lot of challenges that you face.
00:15:10.509 --> 00:15:16.750
What sort of support have you got these days to help you out, given the impact that it is having on your life?
00:15:17.069 --> 00:15:27.309
There's a lot of uh focus on improved living to help reduce MS attacks.
00:15:27.309 --> 00:15:32.029
So I have an exercise physiologist who makes me go to the gym.
00:15:32.029 --> 00:15:43.549
I do hydrotherapy, um, I have regular physio um and uh I see my neurologist regularly.
00:15:43.549 --> 00:15:57.549
I've just uh finished a two-year course of a drug treatment, and I'm told I may not need any more drug treatments for my MS as I'm getting older.
00:15:57.549 --> 00:16:07.549
Um apparently aging, your immune system's not as good as it attacking you as it is when you're younger.
00:16:07.549 --> 00:16:11.309
Well, that's positive.
00:16:11.309 --> 00:16:16.750
But um, it's a constant work in progress.
00:16:16.750 --> 00:16:28.830
You know, um exercise is really beneficial to people with MS, but exercise can create fatigue, it can lead to heat fatigue.
00:16:28.830 --> 00:16:34.909
Sometimes I have to abandon a session just because I've overheated and I need to lie down.
00:16:34.909 --> 00:16:46.669
Um eating really well is important, but eating lots of fresh fruit and vegetables is a lot of hands-on preparation.
00:16:46.669 --> 00:16:53.149
And at the end of a very long day, when you're feeling absolutely wiped out, it's easier to have toast.
00:16:53.149 --> 00:17:09.309
Um, so I have support workers through the NDIS, and part of what they do is um prepare my fruit and vegetables so that I can just cook them, um, so that I'm not trying to stand there chopping things up.
00:17:09.309 --> 00:17:20.670
So it's just trying to maximize my energy to do the things that I need to do to keep myself going.
00:17:20.670 --> 00:17:23.390
So it's like a support team in the background.
00:17:23.629 --> 00:17:26.910
Yeah, it's great that you can have that support now, particularly with the NDIS.
00:17:26.910 --> 00:17:27.390
Yes.
00:17:27.390 --> 00:17:30.349
So obviously there's been lots of challenges.
00:17:30.349 --> 00:17:40.349
Um, but it sounds like one positive that's come from the experience is that you're pretty focused on your general health that's outside of the MS, is it right?
00:17:40.670 --> 00:17:40.990
Yeah.
00:17:40.990 --> 00:17:48.910
I decided very early on that I can't control how the MS rolls out.
00:17:48.910 --> 00:17:51.789
But there's lots of health issues I can't control.
00:17:51.789 --> 00:18:03.309
Um, so uh I can be a very old person that lives with MS that hasn't died from heart disease, um, that kind of thing.
00:18:03.309 --> 00:18:11.549
Um I guess too, it it makes you more appreciative of how important our health is.
00:18:11.950 --> 00:18:12.269
Yeah.
00:18:12.670 --> 00:18:27.230
So I'm, you know, I'm up there with having all screening checks and I'll take every every everything that's offered to me because I'm not going to allow myself to get sick with something I might have been able to prevent.
00:18:27.629 --> 00:18:29.390
Yeah, I can definitely relate to that.
00:18:29.390 --> 00:18:32.829
I'm much more focused on my general health than I've ever been.
00:18:32.829 --> 00:18:35.150
And yeah, I see that as a positive.
00:18:35.150 --> 00:18:42.190
So what do people who don't live with MS do you think most often misunderstand about their condition?
00:18:42.670 --> 00:18:47.549
I've got relaxing remitting MS, which is the most common.
00:18:47.549 --> 00:18:56.190
That means you can have a relapse, live with it, gradually fades away, can go back to whatever normal is.
00:18:56.190 --> 00:18:58.670
Sometimes there's a bit of a deficit.
00:18:58.670 --> 00:19:06.990
Um people are often more aware of progressive MS, where it just steadily gets worse and worse and worse.
00:19:06.990 --> 00:19:16.430
So uh they don't always understand that I might not be having a relapse, but I still have MS.
00:19:16.430 --> 00:19:24.109
So all that extra stuff is bubbling away in the background, the fatigue and the brain fog and things there all the time.
00:19:24.109 --> 00:19:30.269
Um and the relapses are just when this other thing happens.
00:19:30.269 --> 00:19:40.349
Um so when my third grandchild was three days old, I lost feeling in the sole of my foot, which I'd had before.
00:19:40.349 --> 00:19:45.710
But over the coming days it pricked higher and higher and higher.
00:19:45.710 --> 00:19:49.150
And within two weeks it got to my belly button.
00:19:49.150 --> 00:19:53.150
So I had no sensation on the whole of my lower body.
00:19:53.150 --> 00:19:54.509
And that was really scary.
00:19:54.509 --> 00:19:56.509
I was like, how high can this go?
00:19:56.509 --> 00:19:58.349
Yeah, will this go away?
00:19:58.349 --> 00:20:04.430
What if this is now secondary progressive and I won't get it back?
00:20:04.430 --> 00:20:06.910
Um that was terrifying.
00:20:06.910 --> 00:20:10.670
But again, no one could see this because of the sensation.
00:20:10.670 --> 00:20:14.829
I could still walk, I could still uh stand.
00:20:14.829 --> 00:20:21.150
Um, my balance was off a bit because we rely on that sensory feedback a lot.
00:20:21.150 --> 00:20:29.629
Um, but I was having this private meltdown, and yet it still didn't look like anything was wrong.
00:20:29.629 --> 00:20:37.309
Um, and I think that's what people don't understand that it is an invisible disability.
00:20:37.309 --> 00:20:40.910
It's all happening on the inside, but it's still real.
00:20:58.750 --> 00:21:02.029
MS has been part of your life for about half of your life.
00:21:02.029 --> 00:21:06.509
How has it shaped your sense of identity and purpose?
00:21:06.829 --> 00:21:13.390
I was very, very determined right from the start that I have MS, but it doesn't have me.
00:21:13.390 --> 00:21:18.430
I saw that quote somewhere very early on, and I'm like, that's that's it.
00:21:18.430 --> 00:21:22.910
I will not be um my disease.
00:21:22.910 --> 00:21:30.750
Um, and I will not let it stop me doing the stuff that's really important to me.
00:21:30.750 --> 00:21:41.069
So I'll push through to do things with my grandchildren um because they're only kids for a short period of time, I can have MS later.
00:21:41.069 --> 00:21:50.269
Um and um I I look at everything as isn't this wonderful?
00:21:50.269 --> 00:21:57.390
I'm so glad I get to do this right now because I am aware of this thing hanging over me.
00:21:57.390 --> 00:22:08.349
And you know, if I could go back 30 years and tell myself that you know things now look a lot better than I was projecting them forward.
00:22:08.349 --> 00:22:11.150
I'd love to do that because I was worried a lot.
00:22:11.150 --> 00:22:11.549
Yeah.
00:22:11.549 --> 00:22:14.670
Um and, you know, good stuff's happened.
00:22:14.670 --> 00:22:16.910
Some stuff hasn't been able to happen.
00:22:16.910 --> 00:22:24.109
I I twice had to leave the workforce um because of uh the way it was affecting my body.
00:22:24.109 --> 00:22:29.950
Um so, you know, that didn't roll out as I might have expected.
00:22:29.950 --> 00:22:30.750
But that's okay.
00:22:30.750 --> 00:22:37.230
I've done a lot of volunteer work, which I might not have been able to do if it I'd always been full-time paid work.
00:22:37.230 --> 00:22:39.629
So, you know, swings and roundabouts.
00:22:40.029 --> 00:22:40.829
Yeah, absolutely.
00:22:40.829 --> 00:22:48.109
And that volunteer work, the MS peer support work that you do, how has that um affected your own journey?
00:22:48.109 --> 00:22:48.910
Has that helped you?
00:22:49.230 --> 00:23:03.470
Yes, because I I was uh running the local MS group, which is a whole lot of people all living with the same disease, none of whom have got the exact same disease.
00:23:03.470 --> 00:23:09.230
Um people are very, very incapacitated by it.
00:23:09.230 --> 00:23:23.950
Um other people have really functional lives, and I think sometimes we could get really bogged down in our own experience and not realize that it doesn't have to look doom and gloom.
00:23:23.950 --> 00:23:35.629
We had a lovely um boy meets girl in my MS group, um, and they got married and it was just lovely.
00:23:35.629 --> 00:23:37.069
They found each other.
00:23:37.069 --> 00:23:43.629
Um so we we offered a matchmaking service on top of everything else.
00:23:43.629 --> 00:24:04.990
Um but yeah, it's it's about you can sit with a group of people that have the same condition as you, and you can complain about the things without people trying to reassure you or make you feel better or or downplay it, or all the other things that we do when we're trying to make someone feel better.
00:24:04.990 --> 00:24:10.990
Um we'll just all sit around and talk about the ridiculousness of of this condition.
00:24:10.990 --> 00:24:15.069
Um and peer support is exactly that.
00:24:15.069 --> 00:24:20.509
It's I my experience and your experience are walking along together.
00:24:20.509 --> 00:24:21.869
So let's share it.
00:24:22.269 --> 00:24:25.470
Yeah, that's fantastic that you've had such good experiences there.
00:24:25.470 --> 00:24:27.150
And it is very therapeutic.
00:24:27.150 --> 00:24:34.349
And I'm sure you probably pick up tips from other people on potential treatments or things that just make things easier.
00:24:34.750 --> 00:24:40.589
Yes, even just like, oh, did you know you could apply for this or you could get this sort of help, things like that.
00:24:40.589 --> 00:24:45.470
Um, I guess it's insider knowledge um sometimes.
00:24:45.470 --> 00:24:50.670
Um, but we can talk about how different drugs have affected us.
00:24:50.670 --> 00:25:04.349
Um because we do have a range of treatments available now, but you've often got to choose between two or three that are presented to you, and you just don't know how they might affect you.
00:25:04.349 --> 00:25:12.430
Um, so talking to people who have used them means you've got a more realistic picture of what it might look like for you.
00:25:12.670 --> 00:25:31.470
Yeah, and I think also because there are a few different options around, I find sometimes the sequencing of trying those treatments can be informed by other people in the community if you've hear other people saying, look, this one hasn't really worked for me and you can't really find too many people who have, then you might put that third or fourth on your list of things to try.
00:25:31.789 --> 00:25:39.309
And that's really helpful because trying things takes a lot of effort and you know, these are um quite invasive drugs.
00:25:39.309 --> 00:25:45.869
Let's let's not try, you know, a string of them in a row if we can be more selective about what we take.
00:25:47.629 --> 00:25:51.549
You mentioned before about wanting to talk to your younger self.
00:25:51.549 --> 00:26:03.150
So if someone listening to us today has just been diagnosed with MS recently and is frightened about what their future might look like, what would you want them to hear?
00:26:03.710 --> 00:26:04.829
Don't panic.
00:26:04.829 --> 00:26:07.309
Okay, just take a breath.
00:26:07.309 --> 00:26:09.869
Um, it's not a catastrophe.
00:26:09.869 --> 00:26:16.829
Um and it's a really good time to have a condition like MS.
00:26:16.829 --> 00:26:24.990
Um the the treatments that we have now, the goal is that um you don't have a relapse.
00:26:24.990 --> 00:26:32.910
Um most of them are offering like a 50% reduction in relapses.
00:26:32.910 --> 00:26:40.509
But the goal is really if if you have a relapse in that drug's maybe not the best one for you, so we'll try a different one.
00:26:40.509 --> 00:26:44.910
Well, that wasn't that wasn't even on the radar.
00:26:44.910 --> 00:26:54.349
We now have some really strong evidence of what might lead to MS developing in the first place.
00:26:54.349 --> 00:26:59.549
So they're they're starting to use words like cure or prevention.
00:26:59.549 --> 00:27:04.509
Um so it it's it's not what it used to be.
00:27:04.509 --> 00:27:13.150
And um it's scary, but uh it's not as scary as it was in the past.
00:27:13.470 --> 00:27:14.670
Yeah, that's a real positive.
00:27:14.670 --> 00:27:20.349
Is there something that you can still do today that you once worried that MS would take away from you?
00:27:20.910 --> 00:27:25.150
I really was worried about my vision.
00:27:25.150 --> 00:27:39.390
Um so by having three episodes like back to back, there was a really strong chance that another one would come along and I wouldn't get the return of my vision.
00:27:39.390 --> 00:27:42.509
Um that's not happened.
00:27:42.509 --> 00:27:49.710
I've I've not had um any more optic neuritis since last century.
00:27:49.710 --> 00:28:05.069
Um, so uh I was really scared that um I'm a visual person, so the thought of not being able to see, not being able to read, not being able to take photos, these are things that are really part of who I am.
00:28:05.069 --> 00:28:06.430
And that was scary.
00:28:06.430 --> 00:28:14.190
I would have been more comfortable losing the ability to walk than the ability to see, as it turns out.
00:28:14.589 --> 00:28:18.509
So you've written a book called Granny Has Wobbly Legs.
00:28:18.509 --> 00:28:23.710
Can you tell us a bit about the book and what inspired you to share your story in book form?
00:28:24.509 --> 00:28:34.990
There's a lot of groundhog day in life, and my grandchildren are the same age spaces and gender that my children were.
00:28:34.990 --> 00:28:41.710
So I had girl, girl, boy, and my daughters had girl, girl, boy, and they're the same age gaps.
00:28:41.710 --> 00:28:51.710
And so I found myself explaining to another generation why these things were part of my life.
00:28:51.710 --> 00:29:05.390
Um, and uh trying to reassure the children that this is okay and not scary, but my body does some really silly things.
00:29:05.390 --> 00:29:12.670
Um, and so I I focused on describing these things in ways that they would understand.
00:29:12.670 --> 00:29:28.349
And one that we've come up with that's just become part of how we communicate now is if everybody throws questions at me and demands all at the same time, I describe it as you you're all throwing ping pong balls at me.
00:29:28.349 --> 00:29:33.230
Um, because it just feels like I'm being bombarded and my brain just can't cope with that.
00:29:33.230 --> 00:29:56.349
So, so uh I've found ways to explain how I experience these different symptoms, but also to reassure them that it's all a bit funny and it's not something to be scared of and to just try and normalize it for them.
00:29:56.349 --> 00:30:05.150
Um I've explained that you know the cable on my charger is a bit dodgy, so the messages don't always get through.
00:30:05.150 --> 00:30:07.470
Well, I couldn't tell my own children that.
00:30:07.470 --> 00:30:10.109
So technology's been helpful there.
00:30:10.109 --> 00:30:15.150
They understand that I need to recharge my battery more often.
00:30:15.150 --> 00:30:27.789
Um, so things like that have allowed me to help them to understand and to do it without frightening them because children are scared of what they can't understand.
00:30:27.789 --> 00:30:33.950
Um, and they're scared of what might happen, they're scared that it might happen to them.
00:30:33.950 --> 00:30:39.789
Um, and they worry about what nobody tells them.
00:30:39.789 --> 00:30:43.549
So we need to just be very matter of fact.
00:30:43.549 --> 00:30:52.430
Sometimes my legs are wobbly, um, sometimes my body just overheats for no reason.
00:30:52.430 --> 00:30:56.269
Um, sometimes I can't remember what I was talking about.
00:30:56.269 --> 00:30:59.549
Sometimes I just need to sit down or lie down.
00:30:59.549 --> 00:31:04.829
Um, and they just understand that that's part of my my brain being silly.
00:31:04.829 --> 00:31:16.670
Um and I thought, well, if I can help my grandchildren understand, then I can also help other people's children understand what it might look like for them.
00:31:17.150 --> 00:31:17.629
That's great.
00:31:17.629 --> 00:31:24.190
So you you've really helped to normalize condition, as you said, so they're not frightened.
00:31:24.190 --> 00:31:31.309
And I love your analogies there with the um charging cable being frayed and the and the and the battery.
00:31:31.309 --> 00:31:33.069
That's a great way of explaining that to me.
00:31:33.629 --> 00:31:38.910
Sorry, technology has helped me explain it more easily to a second generation.
00:31:38.910 --> 00:31:44.190
Who knows what I'll be able to use for my great-grandchildren.
00:31:44.190 --> 00:31:48.910
Maybe I'll just explain to them that this is a condition nobody gets anymore.
00:31:49.309 --> 00:31:50.430
That would be great.
00:31:50.430 --> 00:31:52.349
That's the dream, isn't it?
00:31:52.349 --> 00:31:59.390
So obviously your peer support volunteering has helped you on your journey.
00:31:59.390 --> 00:32:00.910
Sounds like the book probably has as well.
00:32:00.910 --> 00:32:03.470
Just again, part of that therapy for yourself.
00:32:03.950 --> 00:32:04.430
Yeah.
00:32:04.430 --> 00:32:05.390
Yeah.
00:32:05.390 --> 00:32:19.390
Um, I've also um had counselling with a psychologist to just help to not be angry with yourself for this situation.
00:32:19.390 --> 00:32:25.150
When you've got um an autoimmune disorder, it's no one to blame.
00:32:25.150 --> 00:32:28.349
The enemy is your body.
00:32:28.349 --> 00:32:35.309
Um and it it thinks it's doing the right thing, but it's just completely misread the situation.
00:32:35.309 --> 00:32:46.349
Um, so there's no you you if you get angry, it's just angry with you, and that doesn't do any good at all.
00:32:46.349 --> 00:32:49.869
I can be angry at the situation I'm in.
00:32:49.869 --> 00:32:52.190
Um, but there's no one to blame.
00:32:52.190 --> 00:32:54.349
I didn't make this happen to myself.
00:32:54.349 --> 00:32:57.309
Nothing I did or didn't do made this happen.
00:32:57.309 --> 00:33:02.109
You've just got to be able to work your way through those feelings sometimes.
00:33:02.589 --> 00:33:15.710
And it's really good that you've got the support to help you do that because it's hard sometimes to be able to process those thoughts and having a third person objectively look at it, particularly someone trained like a psychologist, is is great.
00:33:15.710 --> 00:33:17.470
I've certainly benefited from that as well.
00:33:17.470 --> 00:33:27.309
So one of our podcast community members has a question, which is what are your favorite accommodations or accessibility measures that have helped you with MS?
00:33:27.710 --> 00:33:28.190
Do you know?
00:33:28.190 --> 00:33:35.470
Um, it's simple things that may not look like they're disability specific.
00:33:35.470 --> 00:33:38.589
Gosh, I love public seating.
00:33:39.470 --> 00:33:39.789
Absolutely.
00:33:40.109 --> 00:33:47.390
Oh my God, if I need to sit down and there's nowhere for me to sit down but the dirt under a tree.
00:33:47.710 --> 00:33:49.390
Um it's raining.
00:33:49.390 --> 00:33:49.950
That's right.
00:33:50.109 --> 00:33:51.470
Oh, it's raining.
00:33:51.470 --> 00:33:58.029
Um, yeah, we go places and um all the all the seats are in the sun.
00:33:58.029 --> 00:34:01.710
Well now I get to sit down, but I'm going to overheat.
00:34:01.710 --> 00:34:09.470
Um, so just really well thought out public seating can make such a difference.
00:34:09.470 --> 00:34:20.590
Um, air conditioning, um, buildings that are too hot and stuffy can really be feel quite threatening.
00:34:20.590 --> 00:34:28.350
Um and I will often use my my wheelie walk-up when we go out for a day.
00:34:28.350 --> 00:34:30.910
Um it's amazing sometimes.
00:34:30.910 --> 00:34:36.510
We still have shops you can't maneuver around um with a mobility aid.
00:34:36.510 --> 00:34:43.710
And it's not true anything other than lack of awareness.
00:34:43.710 --> 00:34:48.830
Um, the people have set those spaces up have no idea that you can't fit through.
00:34:48.830 --> 00:34:59.950
Um and I've walked out of shops that I really would have liked to have browsed and maybe bought something, but I can't work walk around the space.
00:34:59.950 --> 00:35:08.430
So just those kinds of things, they're not big infrastructure that that needs lots of investment.
00:35:08.430 --> 00:35:15.310
Um, it's just looking at the world through the lens of someone who might just need a little bit of extra support.
00:35:15.790 --> 00:35:20.270
Absolutely, which means you need people who have those challenges involved in that design process.
00:35:20.270 --> 00:35:21.790
And I think that's happening more.
00:35:21.790 --> 00:35:26.510
And I'm sure that's the reason why these accommodations are getting better.
00:35:26.510 --> 00:35:32.270
I absolutely love your public seating uh tip, and I think it's probably mine as well.
00:35:32.270 --> 00:35:44.190
And I know one experience I have with supermarkets, I think it's great that they've now had for a few years seating on the outside of the checkouts so that if you need a break, you can sit there.
00:35:44.190 --> 00:35:46.990
It'd be great if they had them on the inside of the supermarket too.
00:35:46.990 --> 00:35:49.630
So you could have a break while you're doing some shopping.
00:35:50.110 --> 00:35:52.110
No, um that's a big walk.
00:35:52.430 --> 00:35:52.990
Yeah, that's right.
00:35:53.950 --> 00:35:58.510
You know, um it's it's just no one thinks of it.
00:35:58.510 --> 00:36:00.430
And we we need to ask for it.
00:36:00.430 --> 00:36:05.870
We need to give them that feedback and say, hey, did you know sometimes we need to sit down?
00:36:06.350 --> 00:36:07.790
Yeah, it's two-way, isn't it?
00:36:07.950 --> 00:36:08.270
Yeah.
00:36:08.510 --> 00:36:14.510
So can you tell us about your connection with the Sunflare Initiative and what made you feel it was something you wanted to be part of?
00:36:14.830 --> 00:36:22.750
I first saw it, someone was doing a promotion somewhere, and I was like, oh wow, that's that's me.
00:36:22.750 --> 00:36:27.870
Um and uh I embraced it straight away.
00:36:27.870 --> 00:36:35.470
And it's been really interesting to watch the awareness of it growing.
00:36:35.470 --> 00:36:52.110
Um even uh last Christmas we had a local event and um we were going to watch a show in the theatre, and the woman that saw my sunflower lanyard almost grabbed me by the arm and whisked me into a seat.
00:36:52.110 --> 00:36:54.830
It was like, thank you, okay.
00:36:54.830 --> 00:36:57.710
Um, we didn't need to have that conversation.
00:36:57.710 --> 00:37:00.510
Um, you don't need to explain yourself.
00:37:00.510 --> 00:37:15.950
And I want to reach a stage where everybody recognizes that symbol instantly and knows that despite appearances, um, you might need something extra.
00:37:15.950 --> 00:37:20.350
You may need to sit down on the train.
00:37:20.350 --> 00:37:30.910
Um, you might need to um sit closer to an exit or sit under the air conditioner, or you know, you don't have to explain all the why.
00:37:30.910 --> 00:37:33.070
You can just explain the what.
00:37:33.070 --> 00:37:37.310
And I think it's just been a really great experience so far.
00:37:37.710 --> 00:37:44.670
I think you you've hit the nail on the head there with one of the big benefits, which is not needing to explain yourself, which is exhausting.
00:37:44.670 --> 00:37:49.070
Um, can be demoralizing for some people, some occasions.
00:37:49.070 --> 00:37:50.510
And I think that's one of its big strengths.
00:37:50.510 --> 00:37:52.750
You mentioned the train there as an example.
00:37:52.750 --> 00:37:58.270
Has there been any other specific moments where wearing the sunflower made a real difference to you?
00:37:58.590 --> 00:38:14.590
Um, I think when I am out and about, and sometimes I will see people look at it and smile, which isn't making any accommodations, but it's just like I see you and I I understand.
00:38:14.590 --> 00:38:20.670
And um it feels like then that person's an ally out in the world.
00:38:20.670 --> 00:38:31.790
So if I did need support from somebody and I was out without you know my family or or anyone, that there are going to be people who will be aware of what it is.
00:38:31.790 --> 00:38:36.990
And if I show signs of needing help, um they would be the people to step forward.
00:38:36.990 --> 00:38:46.510
So I think it's just that it's like a global understanding that not every disability is really, really obvious.
00:38:46.510 --> 00:38:50.750
And that the ones that aren't obvious are still valid.
00:38:51.150 --> 00:38:51.550
Yep.
00:38:51.950 --> 00:38:53.870
And can be as significant.
00:38:54.270 --> 00:38:55.150
Yeah, absolutely.
00:38:55.150 --> 00:38:57.550
And you're absolutely right about the goal.
00:38:57.550 --> 00:39:06.190
I think it is to make sure that the the sunflower symbol is as well recognized as the wheelchair accessibility symbol in the future.
00:39:06.190 --> 00:39:07.550
And I think that's achievable.
00:39:07.550 --> 00:39:18.350
It's it's growing rapidly, and I'm sure you experience this as well, that it's just more and more people every sort of month that passes that recognizes and give you the smile or come up to you to see if you need help.
00:39:18.510 --> 00:39:19.470
And it's great.
00:39:20.030 --> 00:39:20.910
Always our final question.
00:39:20.910 --> 00:39:32.910
You've given a few examples already, but what's one small change that individuals or organizations could make tomorrow to improve the lives of people with MS or other life-changing non-visible illnesses?
00:39:33.550 --> 00:39:40.510
Being aware that looks are deceiving.
00:39:40.510 --> 00:39:44.190
Just don't assume that everybody is able-bodied.
00:39:44.190 --> 00:39:46.430
That's that's all you need to do.
00:39:46.430 --> 00:39:50.030
You don't need to change your your behavior.
00:39:50.030 --> 00:40:00.350
You don't have to do anything differently, but just go about your normal life, expecting that you know, some people are dealing with something that you can't see.
00:40:00.350 --> 00:40:01.710
And just be kind.
00:40:02.750 --> 00:40:05.870
That's a really simple tip, but a a really good one.
00:40:05.870 --> 00:40:14.910
I think um, like you've said a few times today, there's some really simple things that can um be done um and approaches people can take that make a big difference to other people.
00:40:15.230 --> 00:40:20.670
Yeah, there's one simple one that's come in in recent years on our train system.
00:40:20.670 --> 00:40:24.430
Um, there are chairs that are a different colour.
00:40:24.430 --> 00:40:38.190
Um the standard ones are blue, and then these ones are orange, and the expectation is that you would give up an orange seat for a person that had additional needs to sit down.
00:40:38.190 --> 00:40:53.790
Well, that combined with the lanyard, um, they they could put on um the signage um the the sunflower, and then you wouldn't have to even have the conversation say, excuse me, do you mind if I sit down?
00:40:53.790 --> 00:40:56.270
Um, that would be part of the awareness.
00:40:56.270 --> 00:40:58.830
And nobody would have to do anything differently.
00:40:58.830 --> 00:41:02.510
It would just be integrating that into the existing system.
00:41:02.990 --> 00:41:03.390
Absolutely.
00:41:03.390 --> 00:41:07.630
I think that is the direction it's heading in, and I'm hoping that that will happen soon enough.
00:41:07.630 --> 00:41:11.550
Thanks, Yvette, so much for joining us today on the podcast.
00:41:11.550 --> 00:41:13.150
It's been great talking to you.
00:41:13.150 --> 00:41:18.190
Loved your tips, um, particularly those really simple ones that everyone can be aware of.
00:41:18.190 --> 00:41:23.870
I love that you haven't made MS become the sort of headline of your life story.
00:41:23.870 --> 00:41:27.550
Um, and you've got some great tips about how to make sure that it doesn't.
00:41:27.550 --> 00:41:35.230
I also love how you've shared your experiences with the next generation and you're communicating to them how it impacts you.
00:41:35.230 --> 00:41:46.990
Because I'm sure that will help in their relationship with you, but they'll apply that across the border in life to other people with challenges that they can't see or don't understand.
00:41:46.990 --> 00:41:49.870
So that's having a real positive impact.
00:41:49.870 --> 00:41:52.270
So well done on on the book.
00:41:52.270 --> 00:41:53.390
That's great.
00:41:53.390 --> 00:41:53.950
Thank you.
00:41:53.950 --> 00:42:02.030
And and all your support to um your fellow um MS people over the years.
00:42:02.030 --> 00:42:04.990
I'm sure that's been having a big positive impact on a lot of people.
00:42:05.310 --> 00:42:05.790
Thank you.
00:42:05.790 --> 00:42:07.550
It's been a ride.
00:42:08.270 --> 00:42:10.910
Thank you for joining us for another Sunflower Conversation.
00:42:10.910 --> 00:42:27.390
Please keep the conversation going via our website, hdsunflower.com forward slash AU, on Facebook at Hidden DisabilitiesANZ, on Instagram at hidden disabilities underscore ANZ, and on LinkedIn at Hidden Disabilities Sunflower-Australia and New Zealand.
00:42:27.390 --> 00:42:33.630
You can also visit our website if your organisation or an organisation you know is interested in becoming a Sunflower member.
00:42:33.630 --> 00:42:43.390
If you would like to submit a question for one of our guests to answer on a future episode, please direct message us on socials or email us at hds events at Bailey House.
00:42:43.390 --> 00:42:48.510
That's B-A-Y-L-E-Y-H-O-U-S E.org.au.
00:42:48.510 --> 00:42:56.910
Please help, have patience, show kindness to others, and join us again soon, making the invisible visible with the Hidden Disability Sunflower.
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