Functional Neurological Disorder, FND, with Simone Round
 

Speaker Key:

VO     Voice Over

CB     Chantal Boyle

SR      Simone Round

00:00:00

VO      

Welcome to the Sunflower Conversations, where we explore the Hidden Disabilities Sunflower and its role in supporting people with hidden disabilities.

CB      

Welcome to the Sunflower Conversations. I am your host, and my name is Chantal. Joining me today is Simone Round. Simone is an ambulant wheelchair user and is going to share her experiences with living with functional neurological disorder, which is abbreviated to FND. So, Simone had an active career in hospitality, entertainment, and latterly as a personal trainer and life coach. So, we will learn how the symptoms she has experienced have impacted her work. 

So, first of all, before we begin and get into the nitty-gritty, I'm going to give a visual description, and then I'm going to invite Simone to do the same. So, I am a woman. I am perimenopausal, as I have just been explaining to Simone before we started, so I am in my midlife. I have brown skin. I've got long, brown, curly hair, and it's down. It's down my back and on my shoulders, shaved around the side. 

00:01:36

I have clear-framed glasses. I am wearing a little bit of makeup. I've got a pale-pink top on, like a T-shirt, and I'm wearing the white-and-yellow Proud to support Sunflower lanyard. So, that is me, and I'm going to hand over to Simone. So, thanks, Simone.

SR       

I am Simone. I'm a woman of 31 years of age. I have long, blonde hair that is curly and to the side. I also have a black dress on with a Sunflower lanyard, which is green, and with the sunflowers all over it. I have my AirPods in, and I have quite a bit of makeup on. I've got a nice tan, and I've got some pink lipstick on, yes.

CB      

She’s looking absolutely gorgeous. 

SR       

Thank you. 

CB      

So, let's start off, Simone, with the first question, which is, would you tell me what disabilities you have and how they started?

SR       

Yes, of course. So, I've got a few in my shopping bag, as I always say, but my main one is functional neurological disorder. And I have chronic migraines, menstrual migraines, IBS and an essential tremor in my right hand, which is where all of my symptoms started for me. And my symptoms have just almost snowballed, as I call it.

00:03:09

SR       

And I've also got tics and a stammer, an acquired stammer, sorry. And this has all just come four years ago for me, so it's still a new thing, a new learning, how to live with this condition. And I also have non-epileptic attack disorder as well.

CB      

That's quite a lot that you're living with there, and that's all happened in four years?

SR       

Yes, it has.

CB      

Okay. Well, maybe we could talk about some of your symptoms. And you said that it started with an essential tremor. Would you mind explaining to me and our audience, what is that?

SR

Yes. So, I have always worked in the entertainment and fitness industry, and I've always loved the gym. And I was lifting weights in 2018, and I noticed my hand was shaking, and I thought I'd pushed myself too hard in the gym with the physical exertion. And then I noticed this shaking in my right hand. It didn't stop, and the more tired I was, the more I exerted myself in the gym or working, the tremor, in just my right hand, exasperated. 

So, I went to the GP, and the GP diagnosed me there and then with essential tremor. Then, for me, I know I did try medication. So, you have propranolol and beta blockers, things like that, to try and curb the essential tremor. But essential tremor will just progress. It’s a progressive condition. And mine is a postural tremor, which means when I go to reach my arm out, is when my tremors are at my worst, or when I go to stand up in a fixed position, my tremors are worse then. 

00:04:55

And, yes, for me, that was my first time I'd ever heard of essential tremor. So, I did my research, and there's a National Tremor Foundation, and I did a few things online with them, and that really helped, so you don't feel alone. But then, for me, unfortunately, my tremor progressed through my whole body. So, I always say, I shake like Beyoncé, like I'm dancing. And that was when I first had my symptoms of functional neurological disorder. I was diagnosed with FMD, which is functional movement disorder. It's a…

CB     

Functional movement disorder? Okay, so I haven't heard of that one. We have covered FND on the podcast before, and we've had some really interesting conversations with a charity and a professor, but FMD, I haven't heard of that.  Always learning something new.

SR       

Yes, and to be honest, I hadn't really heard of it myself, but because for me, my biggest symptom is the function, is the movement element of my body, whereas FND is a big umbrella term, and for me, mine was focusing more on my movement. So, functional movement disorder is what my neurologist diagnosed me with at first, and then I wanted to do… With FND, it's conclusive. You have all the tests, and if I come back, they’re fine, it’s kind of, you’re FND.

So, yes, it's been a long journey for me. I've only just been diagnosed with FND, and that has been six months. So, it is an umbrella term, and that's really hard to grasp, because I was so confused. I said, well, why have I got FMD and not FND?

00:06:41

But it's just purely because my FND is movement-based, so it really affects my movement the most.

CB      

And then you said you've got tics, which, a lot of people might associate that with Tourette’s syndrome.

SR       

Yes, but mine is functional tics, which also comes under the umbrella of FND.

CB      

And how do your tics manifest? What do they look like?

SR       

It would probably be head flicking. I’ll do a tic and a whistle, which might come out, and I'm happy for people to hear them, but just hold your ears. And it’s when I get quite excited or anxious, to be honest. It's not a constant for me. It is daily, sorry. I do have them daily, my tics, but it seems to be when I'm excited.

CB      

Well, I feel like you're not very excited to be here right now.

SR       

I am, I promise. When the nerves come in, the excitement, [overtalking] if something happens. But it is a very strange one because these have only come in the last two years, so it's progressed into them, if that makes sense. It feels like a sneeze. That's the best way to describe it. When you know your sneeze is coming, and you can't stop it, that's how it is. And it's whatever's on my brain. So, I might be ticking dog, because I've got a dog.

CB      

Oh, okay, so there are words as well that come?

00:08:06

SR       

Yes, there is for me. And that sometimes makes my… I live with my partner, and we have a bit of a giggle. But when I laugh, it then makes it come out more.

CB      

Oh, I see. And out of interest, how long might that last for, a ticcing episode?

SR       

It can vary, but for me, it's about five to ten minutes that I’ll be going, almost, and then I tend to have a seizure around that time. So, obviously, there is different wording for non-epileptic seizures. I'm aware, there can be episodes, seizures, or there's a lot of different phrasing for them, but then, my speech will go after that. So, I get my stammer and then my speech. And, yes, it's a bit of, like a roller coaster, if that makes sense.

CB      

Yes, it really sounds like it. And what type of seizures do you experience?

SR       

So, I have vacant seizures where I just stare, and that's how mine first started. I remember being in the kitchen with my mum, and you know the clock light on your oven, I remember just staring at it and thinking, wow, that's really fascinating to me. And then that was it. It’s almost like falling asleep, sort of thing.

CB      

Okay. So, you can feel yourself gliding? So, I’m using the word glide. I'm just throwing it out here. You know what you feel, but is it like you glide into it, as opposed to, like, boom, it's happened, and you didn't know it was coming?

SR       

I've got a few different seizures that I have, so I have a drop-leg seizure. That's when I don't know when it's coming. That literally, I'll be stood up, drop and full-body convulse, where your body all convulses. 

00:09:49

I do have larger seizures, where I can feel them building up. I might not have some for a while, and they'll build up, but these vacant ones, I, kind of, don't know where they’re coming. And I also have ones where I look like I'm falling asleep. Yes, so they are testing me for narcolepsy, but who knows with this? But I actually saw a consultant that is specialised in NEAD last week. After three years of waiting for it, this was my appointment. 

And she explained that the reason why you have them so frequently, and I don't understand they're coming, is because my brain and mind has made that normal now, so it will shut me down to protect me. The brain and mind is very powerful. So, I'm still learning, yes.

CB      

Yes. Well, it sounds like you've had, and you still do have, quite a lot to contend with, but you seem to understand what is happening to you, which must, I guess, help with the journey of acceptance a bit.

SR       

Absolutely, and that would be, for me, one of my biggest pieces of advice for somebody going through what I'm going through with FND or any functional illness, is, understanding is key, because knowledge is power. That's what I would say. Obviously, there's so much stuff out there that you could get bamboozled by, FND Hope, FND Action. They're all brilliant to educate yourself until you then meet that person, like, I've waited three years for that appointment, but I'd already… 

Because if you're in denial, which I'm sure people are… Look, when I first went through it, I’d think, no, this isn't it. It's epilepsy, or it's… 

00:11:37

You're really trying to fight for yourself, and that's really hard and draining. But I think, if you accept and acknowledge where you are in your journey, it's actually been life-changing for me. And that's only been this year that I've done that, to be truthful to you.

CB      

You are listening to the Sunflower Conversations with Chantal. To learn more about the Sunflower, visit our website. Details are in the show notes. 

Well, you’re 31 now, so this all started in your mid 20s, when you are bounding around like an excitable puppy, loads of energy. You were telling me, when we met before, that you worked on the cruise ships as an entertainer, and obviously, being a PT takes a lot of energy as well. So, it must have been very difficult for you to adjust to what was happening to your body.

SR       

Yes. I feel like the adjustment, that's something I've battled with, almost the frustration of why can't…? I used to train for ten hours a day. I was training other people. I'm very, very active, and I've always loved an active lifestyle and working on a cruise ships, you do 70 hours a week with no days off for, like, eight months. So, I've always worked. I’ve always push myself, probably to my own detriment, looking at it now. But the adjustment, that probably is… You are in denial, and I was in denial. 

And that's okay to be in denial, but you've almost got to have, I think I've had, a switch recently. 

00:13:14

And also, saying that I'm disabled, that can be very difficult. And I was 28. My friends were all going out, and I couldn't do that, and I was very social. I love music. I was a DJ, and I couldn't be around that, so like loud sounds, lights, and I still can't. And that's just a shift in life, and that's been really hard, to be honest.

CB      

And what is the effect of being in those environments for you? How will it affect you?

SR       So, for me, my triggers for my non-epileptic seizures are lights. I was going to say life, but that's not fair. So, these are what I know so far. Lights, if I’m scared, if I'm overly happy. Loud music is a massive trigger for me, so if I were to put myself in that environment, unfortunately, I would miss out on everything. Oh, I went to see Beyoncé with my sister.

CB      

Just recently?

SR       

No, it was the first time around she did the tour. And I went in the wheelchair section. We’d done it all correctly, and it was amazing. I wore my Sunflower lanyard. It was brilliant. As soon as I got in there, she's got brilliant effects, and that was it for me. I never understood why they put, on TV, photosensitive, flashing lights. That's a massive trigger for me. And that was it. I just had seizures, completely back to back, to back, to back, and we had to leave. 

CB      Oh, gosh.

00:14:44

SR       

So, yes, it's a difficult… So, for me, I just avoid that now. It’s safer for me until I can, maybe, get my NEAD under control or have a little bit of help for it. It's not, it's not good for me. I have my sunglasses, my glasses that I wear inside.

CB      

Oh, okay, and that just helps to just dim down the sensory to your pupils?

SR       

Yes, and I wear, they’re like Loop earplugs, just to protect myself a bit as much as I can because obviously, with the migraine, I'm super-sensitive to light and sound as well. So, yes, a lot to think about.

CB      

Are you sensitive to smell?

SR       

Yes. I hate my partner's aftershave. Honestly, I’m not… Don't put that on, please. Yes. Smelly as… Yes, and I've had that since I was 14.

CB      

Oh, okay, that's interesting.

SR       

Yes. Since I started my periods.

CB      

And the hormones. 

SR       

Hormones, yes. But I've been able to manage the migraines, and then they've just got worse and worse and daily, and I didn't realise they were daily. I just thought it was normal to have a headache every day.

00:15:57

CB      

Yes, well, it's not a headache, though, is it? Really, a migraine is not a headache.

SR       

No. And that’s…

CB      

That’s a whole different beast.

SR       

It is so different. And for me, I thought, oh, I've got zig-zag lines. Oh, that's… I normalised it because I was working so much and pushed through and pushed through, and my neurologist does think that is where my FND has come from, from being in pain and pushing through. The nerve ending, the firing isn't going to work because it's focusing on the pain.

CB      

I see. Because the thing is, that's what they say, don't they? Our body tries to give us warning signals in terms of like, okay, this particular area of your body or your brain or whatever has experienced something. You need to take action, a little bit like a smoke alarm, I guess. So, it’s giving us little smoke alarms, and if we don't respond, then I guess, that's what's happened to you, which is just so hard, isn't it?

Because a lot of the advice you hear, especially from parents or older generations, just push on through. Come on, get a grip of yourself, and get to it. But it's not always the right advice.

SR

No, and I do think, for me, I am a very motivated person, so I do push through, even now, to this day. I know, with chronic illness and disabilities, hidden disabilities, we talk about pacing and spoons a lot. 

00:17:27

Well, for me, I still haven't mastered that. And I'm learning. I'll go and see friends, and then the next day, I'm in bed all day, migraine. There's no rhyme or reason, but there is. It's the physical exertion and things like this. Like this podcast, I'll probably need a sleep after. I've had one before. You have to maintain that, but that's hard. How do you know? Do you know what I mean? Just learning.

CB      

Yes. So, in terms of that, then, you can't work now?

SR       

No. 

CB      

What is a day like for you?

SR       

So, I will wake up. Well, I'll be woken up by my carer, PA I have, sorry. She’ll come and let herself in. She’s got a key and gets me out of bed, helps me get washed and dressed. That's on a good day. On a bad day, I'll be in bed. She'll bring my breakfast to me and do my meds, and I probably will stay in bed, which, saying that out loud is such like, oh, what, she just stays in bed? That's how it feels to me. I'll just stay in bed. I haven't accomplished anything.

Then, on a good day, I'll come downstairs with my dog and sit in the garden, do a little bit of deep breathing and mindfulness. And then I try and do a little bit of movement because I think it's so important with anything. But for me, my movement is totally different to what it was before.

00:18:45

CB      

Yes, so obviously, you've got to describe this for the purposes of a podcast, but what kind of movement do you try to do?

SR       

So, for me, my movement would be, I love YouTube, and I pop on a YouTube, it's actually a senior seated dance class. So, I'm supported by my chair. I can just do a little bit of movement. And they usually ten minutes long. They put some 80s music on, and it's just a bit of fun, but that's my movement. Or I might have a, I don't know if you've ever seen them, that you sit, they’re little bikes that’ll go on the floor, and they're just for your feet, so…

CB      

Oh, right. Like the pedals?

SR       

Yes, just the pedals. And it's relatively cheap, and that is good for me for ten minutes. I would say, my maximum movement is ten minutes, and going from doing 20 hours or something crazy before, it has changed. My body's changed. My energy levels have changed, but I'm just grateful and blessed that I can do that little bit of movement, because that is a blessing to be able to do that, it really is.

CB      

Well, I guess having your career, being the personal trainer, etc., you know, like you said, how important movement is, because if you don't move, your muscles are going to waste, aren't they? And you're going to get even more problems that will compound the FND that you're already… So, all of the things, sorry, I just switched then, I didn't even finish that word, which you’re already experiencing, all of the things that you have been talking about so far, they come under the umbrella of FND, do they?

00:20:26

SR       

Yes, that is correct, apart from, for me, I do have mixed urinary incontinence, which, that has come later down the line, and we don't know why yet. And IBS, they're my only things that aren't linked to my FND and under that umbrella. Yes, which I'm having treatment for those. I always say, they’re things you can treat, on paper. You can see them, you can treat them, whereas with FND, it’s a shame because I know there's a lot of stigma. 

I personally haven't experienced it, but I can understand, I know people who go through a really hard time and have the stigma of what comes with FND and all those things. So, that's why I want to educate people because…

CB      

Can you explain a bit further about the stigma, what your friends are experiencing?

SR       

Yes. So, because it's not showing up on scans, and it's unknown, still to this day, with the NHS and things like that, it's functional, so we can't see it, there's a lot of stigma. So, say, if I were to go to A&E with my non-epileptic seizures, nobody really understands what that means and what that is. So, I might go and say, I've got functional movement disorder. They have no idea what that is. You’re then explaining to somebody and going through it, and you can be met, my one friend has been met with, oh, well, there's nothing wrong with you. Go home. 

And that's really difficult. Luckily, my neurologist is brilliant, because I've said, this has been said to people, and it is the stigma. And he said, there is something wrong with you. It's your brain not firing properly. 

00:22:12

But there's no pathway, still, for FND. There’s treatment options that you can get, but it's like when endometriosis was coming out, and there was no pathway. We're still fighting. We're fighting for that, the pathway and the help and things like that. So, that's what I would say, you can be met with some silly comments, really.

CB      

I think you're too young to remember this, but a couple of decades ago, they used to talk about something called yuppie flu. I don't know if you've heard of it?

SR       

I recognise the name.

CB      

Yes, and I think so, please correct me if I'm wrong listeners, but I think that it was related to ME, chronic fatigue syndrome, things that, like you say, are functional, and that you can't pinpoint, such as FND as well. It's yuppie flu, as in, like, there's nothing really the matter with them. They just want some time off work [overtalking].

SR       

Yes, which is such a bad… Because ME, chronic fatigue and chronic pain syndrome falls under the FND bracket as well and fibromyalgia and things like that. We're all part of a secret club, invisible disability club.

CB      

Very non-visible. So, that was one of the questions I wanted to ask you. So, you are an ambulant wheelchair user, right? So, can you explain to our listeners, ambulant wheelchair user, what does that mean?

SR       

So, it can be anybody who can walk. You could walk a tiny distance. 

00:23:52

You could have chronic fatigue, where you have a limited energy-limiting illness, that you need a wheelchair to get out the house. It's mainly for people who need a wheelchair, but can walk as well. So, for me, I physically can't walk a lot without shaking like Beyoncé. I can walk to the end of the room. So, for me, I wouldn't be able to go outside of the house without my wheelchair. It's not possible. 

Whereas other people could have, say, MS or fibromyalgia, where their pain levels are so high on certain days that they would need a wheelchair for those days. So, often, people may think, for me, I always think, I'll get out of my wheelchair to go… If I go for a meal, I sit in the chair, and people might think, oh, it's a miracle. It's not. It's just because we can move a little bit, but we don't… I sometimes like to sit in a normal chair when I'm having a meal because it feels different to me.

And I could, potentially, walk to the restroom if the wheelchair toilet isn't available, whereas I've got my cousin, she's paralysed on her lower legs, and she can't walk anywhere. So, that is the difference, and a simple way of describing it, really.

CB

Yes, that's lovely. Thank you very much, and I think that would be really helpful for people to understand that, just because you've seen somebody using a wheelchair one day, they might not be using it the next day. And that doesn't mean that they were faking it. It means that's how their condition and illness and disability is affecting them at that particular time. So, you have, disability can be temporary, it can be permanent, and it can be situational. 

00:25:33

So, it's just good for us to talk about those different scenarios so that we can help to inform the wider community, so that we can manage our responses when we see people and have that understanding to be kind and supportive. 

You are listening to the Sunflower conversations. Remember to hit subscribe. 

So, you mentioned, also, about your personal assistant, PA. So, how do they support you? And what is the difference between a PA and a carer?

SR       

So, for me, my PA, she's brilliant. Said she doesn't mind me mentioning, her name is Chloe, and I’ve also got one called Emily. And they will come in the house for me. They will clean. They will help me get ready, help me eat, always make sure I eat, take my medicines, everything like that. The difference for me between the carer and the PA element is, a PA can take me outside, and they could do my shopping and drop it off. 

It gives me more freedom to be able to live, whereas, when I had carers they’d come in four times a day for half an hour. They'd come in, there'd be different people, and it'd be half an hour time, get your food, maybe have a wash. And that didn't ideally work for me because, as we were just talking about fluctuation in illnesses, my fluctuation is so severe with migraines, I can't get out of bed some days, whereas with my carers, they were brilliant, but they'd want to get me out of bed and do the correct thing that they have to on paper, if that makes any sense.

00:27:17

 Like a tick-box exercise. We've got to come in, get her out of bed, feed her, wash her, whereas with my PA carers, there's more flexibility, and with my council, they described it as, it's actually an aide for freedom, rather than a carer coming in and just come in to see you, because I would have to stay in the house on those days. You can't go out. And for me, being 31, the one thing I want to do, if I can, is go out. 

It's really simple. I just want to go out for a walk. That's all I ever wanted, but I couldn't do that. And they help me with my shopping, and I'll be honest, having my PA has totally changed my and my partner’s relationship. Yes, because he's now my partner. He doesn't have to do the shopping. I can be me again in that sense. So, I would advise people, if they really feel a little bit trapped with the care at home, it's brilliant if you can. 

You have to go through a lot of interviews and things to make sure you're eligible for the PA carer, because ultimately, you're paying for somebody else to work, and you employ them. So, that's something new. I'm an employee, but I had help because I wouldn't know day of what the week it is with the brain fog and everything. So, yes.

CB      

So, that enables you to really have that independence from your partner and, because I don’t know, the stress from… Where you, with your partner from before you became ill, or did you meet each other since becoming unwell?

00:28:56

SR       

I've been with him for seven years, so we knew each other before. So, he's seen it all, the good, the bad, the ugly, and we've moved in recently as well. So, April, last year, we've got a house, which really is brilliant. It’s accessible for me and fabulous. He's really good, but I don't want him to be my carer, nor my mum. I want them to be my family at that time. And it was a lot of stress and pressure. And I think, seeing me have seizures and things every day and be in pain, it's not nice for them.

And my partner works as well. So, yes, it's just given us the free… I would say, me the independence, yes. Independence, even with someone all the time, you sometimes feel… You know what I mean? It's nice to have that bond, and then she just knows. They understand it. They do my hair, like things I can't do, help me with my makeup.

CB      

Yes, well, you do look absolutely fabulous. When you came online, I was thinking, oh, God, I should have made more of an effort.

SR       

I'm not going to lie, that's Chloe. She did my hair. She was a hairdresser, so…

CB      

She's got skills.

SR       

She has, hasn’t she? Carer points.

CB      

But, that's all part of it as well, isn't it? Why shouldn't you feel gorgeous? You are gorgeous. 

00:30:15

But if the actual physical effort of holding that hairdryer and putting the curling things in your hair is something, which is way beyond your capabilities, that's such a shame, isn't it? So, it's nice. It's those simple things that just give yourself a little bit of a boost, make you feel…

SR

And do you know what, I never even thought, blow-drying my hair, because I have tremors, that it would be so hard, but it's painful. It's hard to hold that, whereas, say, for Chloe, able-bodied, it's so quick and easy for her, and she loves doing it. And it is just something so simple that can change your day and your life. So, I need the help, and I have it, and it works perfectly for me, the PA role that I've got, instead of…

You can do more girly things, and a bit more me. I wouldn't even sound that girly, but since becoming disabled, I actually have been tuning into that a bit more. I don't want to look ill. And I know that sounds very weird to say, but if I didn't have my makeup on, you would probably see my eye bags from my migraine that I’ve had. So, yes, like you said, why shouldn't we feel glamorous, everyone, really?

CB      

Exactly. What has it been like for your mental health, this adjustment?

SR       

Well, I always say… Everyone always says to me, oh, you’re so positive, and you really push through, but I'm going to be so honest, it has taken a lot from my mental health, more for the physical element. There's been, I actually have done, talking therapy through the NHS twice. 

00:32:12

So, I did one, and I would advise this to anybody, with a chronically ill group, and it completely changed everything for me because I wasn't alone. And we went through the stages, so the stages of, with the chronic illness, where your mental health goes. So, you have grief, anger. I've never been angry in my life, but honestly, I've been angry and jealous, and that is not me, honestly. 

I think, oh, look, they can go out for a coffee, and then they can go to the shop. What, like in one day? And I don't know, for me, why I've struggled so much is because it's an alien emotion to me. And they spoke about that. And then you've got grief because of where you thought your life was going. And for me, that is very true. I thought we'd be having children. I thought, now we don't know where that's going. 

I've still achieved amazing things, don't get me wrong, but your life is going to look different, inevitably, becoming disabled, it is. And also, the phrase, how long is a piece of string, with your FND and functional things, we don't know the outcome and the prognosis. No one can tell you that, whereas, if you did say… My mum had breast cancer, and we liken them together. She says, she had a treatment plan and a prognosis, 

She said, in a way, that was easier for her because she knew where she was going, whereas then, she said, with her watching me, she's as confused as I am, and we don't know how long the piece of string is. 

00:33:50

So, that's taken my mental health turn because I'm like, well, if it came this quick, I could wake up, and it could go this quick. My partner's favourite phrase, that is. And then, I think sometimes I'll get frustrated with other people's comments, which I'm sure everybody in the disability community does. And I would never, ever be angry like that. And the world isn't really accessible, and I've learnt that. And I've got so much admiration for people in wheelchairs, with walking sticks, everything, because you are battling just to go outside, and that, for me, is incredible. 

And my mental health has improved now, I would say. I've had therapy, one to one, again through the NHS, because I physically couldn't afford to pay for it myself, and it is really good. I would recommend it. And I'm a mindfulness coach and a life coach, believe it or not.

CB

Yes, that mindfulness coaching, have you done that since becoming unwell? Is that something you've added to your repertoire of skills?

SR       

Yes. I was qualified before. So, I qualified in 2022 as I got ill. I thought, Is this a sign? No, I’m joking. But I really found it useful in this time. A lot of things I've learnt, but I still do the odd little Zoom for my old clients, voluntarily, if I can get the energy, and that makes me feel good, but it is hard. I don't know, it's hard to, when you're in a low place, and your mental health’s taken a hit, to then do your mindfulness.

So, I think you've got to just give yourself a little bit of grace, and I never did that. I thought, come on, get up, do your mindfulness. Get up, do your yoga, or if you can. 

00:35:45

Well, I doesn't work that way, does it? Not when you're not feeling… Brushing your teeth is hard when you’re, one, disabled, and then also, your mental health’s taken a dip. But I am grateful of coming out the other end, which I'm really proud of myself for really, yes.

CB      

Good. And it sounds like you're a very honest person. You're honest with yourself about how you feel and the impact that it's had and recognising your emotions, and to be proud of yourself as well. Like you just made a comment about, brushing your teeth on certain days is something that's really difficult to do. And to be proud that you have managed to brush your teeth, which I'm sure, if you’d had that sentence said ten years ago, you would have been like, what on earth are you talking about?

SR       

Yes, it really is the simple things. And that's one thing. Yes, this has been a terrible time for me in learning how to deal with it, but actually, I've learned so much, and it's given me a positive spin on life. All the things that, when I was a PT, I used to think your body was the most important thing, how you looked, all these. None of that matters, well, to me. None of that matters anymore. It matters if I can get up, have a lovely cup of coffee in the garden. That is a brilliant day for me, that. Bit of sunshine. What could go wrong? That’s perfect.

CB      

And in terms of mindfulness, I bet you really savour every sip of the coffee and taste the bean and all of that, don't you? 

00:37:28

And when you're sat in the garden, you're really conscious of if there's birds, or if there's a car, or looking at the plants and the things that, in a busy lifestyle where you're not battling pain and chronic illness, you are operating so quickly, you're not taking in any of those things. You're gulping down your drink. You haven't got time to sit in the garden, or you're planting your plants, but you haven't got time to watch them grow or anything like that, or you think you haven't got time. 

Well, actually, probably we all need to be like, whoa, whoa, whoa, just slow down a minute. Appreciate what you've got around you, and connect to natural environment.

SR       

Yes, for me, I always say, the simplest thing for mindfulness, we often think we've got to sit down and almost meditate, and that's a common misconception. If you're on a walk, whether you rushing to the office or anything, just take your time, and try and notice three new things that you've never noticed before around you. That is such a simple exercise that you can see. And then, like you said, for me,  everyone, with migraines and coffee and things like that, but I’ve honestly really got into decaf Nespresso, and I'm like a connoisseur. 

It's the best thing ever, but that is so simple, but I really enjoy, as you just said, every sip and every conversation I manage to have with someone. That's so enlightening, because we don't really talk to people, or those things that, if you could just take away from one thing, is to notice three things around you when you're on a walk, or even just sat down, because life can get so overwhelming and too much, can’t it?

00:39:19

 We all feel that sometimes, and that's just a little bit of mindfulness that you can do anywhere, at any time, when you feel…

CB      

Free. Doesn't cost anything, guys. Sorry.

SR       

That’s it. It's free, yes.

CB      

What are your thoughts about the Sunflower?

SR       

The Sunflower, for me, is incredible, because it makes the invisible disabilities visible. And that is something that is just incredible because you also get to see, it's almost like you're in a secret club, I always say. You’re in a secret club, but you don't have to physically tell somebody what is wrong with you. They don't need to know your diagnosis. They see, you have the lanyard on, you need a little bit of help, you might need a little bit of space. And I think it's just like a gentle nod to make an invisible disability visible.

And it's optional. You don't have to. It's not mandatory. People who are wearing it understand that they want that extra help, and they might need a little bit of space. I think, what a brilliant tool, to bring that to light. Yes, I always say, it's like a secret community, isn’t it, the Sunflower Club. And if you see people wearing it, I almost do a little smile to myself and that. I’m part of the Sunflower now, like the lanyard club. 

00:40:34

CB

A community.

SR       

That's exactly what it is, a community, and you don't feel alone because you see it everywhere. And for me, personally, I use it around travel, because obviously, I am in a wheelchair, so you can see my disability. That is visible, but you can't see the things that I might need, a quiet room, a dark space and things like that. And that's on my lanyard, so if I were to, potentially, be on my own, if my mum popped to the toilet, or my partner, if I were to have a seizure, somebody could pick up that lanyard and go, I'm going to get her to a safe space, a quiet, dark room. 

And that is incredible. I don't have to say anything. With my seizures, I do lose my hearing and everything, so that's really good. If somebody could, potentially, help keep me and make my seizures better, and that's just from wearing a lanyard, that is incredible, isn’t it?

CB      

Yes, and does it give you confidence, then, so that, when you're in a space, and you’ve just described, if your partner or your mum has to go to the toilet, go and pick up something from, I don't know, the check-in desk, whatever, and they have to just be away from you for that whatever period of time, would you say that it improved your confidence? Has it reduced the fear?

SR       

The fear is definitely… The fear, for me, because it's scary, and I know it can look scary to other people. And I've only had my lanyard and first went on holiday, and that's when I got it, for that holiday. 

00:42:10

And it was in a different country that actually, I noticed it in Spain, and they noticed I had it on, and I was ticcing. And they almost just knew, I don't know how to describe it, just to take a little bit care with me. They almost just knew, and to me, that's half the battle with invisible disabilities and things like that, is actually having people see it and people understand that, okay, I need a bit of help. Same with autism, ADHD, anything like that. We just need a little bit of help. 

And for me, that's what it did. It makes me feel, actually makes me be able to be on my own, and that is very rare. I'm never on my own. I always have someone sat nearby and things like that. So, that is brilliant. Yes, freedom again.

CB      

Do you have any advice for anyone who's facing a similar diagnosis and health path as you, Simone?

SR       

Yes. So, it's taken me a while to get this way, but I would definitely say, unfortunately, you have to be your own advocate. And that's something that is really hard when you're going through, it’s such a scary illness. And it can progress, manifest and snowball out of control. I have every symptom going, and that is scary. Every time a new symptom comes, it's scary. My biggest advice is, write all these symptoms down, keep the dates that you have them, use your options and your free resources. 

So, self-refer to rehab, as in rehabilitation for physiotherapy. You can self-refer most through the NHS. I did. 

00:43:55

Then you can self-refer for NHS therapy, or there's loads of stuff online, a bit of mindfulness, yoga, those sorts of things, FND Hope offer as well. Use your resources until you're waiting for that, I call it, big appointment, because, I've seen my neurologist three times, and that's it in the time, and I've only just started going to a treatment centre. So, my biggest advice is, keep a log of your symptoms and speak to your GP. 

Most of them are understanding. Ring them when you have a new symptom, and just write it all down, and then use your free resources like FND Hope, all those things. Listen to podcasts about it. Those three resources, until you get that help and things like that. That's my biggest advice, yes.

CB      

And if anybody is interested in the personal assistant, what channels do they have to go through to try and apply for that?

SR       

So, you would have to speak to an occupational therapist, which, again, you can actually self-refer in my area. I'm in the Midlands. I'm not sure if you can do that everywhere, or your GP can recommend you to an occupational therapist. Then an occupational therapist will get in contact with your council. So, for me, it's Dudley Council, and then they'll go from there. They'll assess you. It is quite draining with your symptoms, so just prepare, write it all down, have a person with you, write what your needs are.

00:45:26

And then they'll be able to point you in the right direction and see if you qualify for a PA or a carer.

CB      

That's fantastic. Thanks so much, and I am really grateful, because I know that you're going to have a comedown from this now, but just know that this recording will be listened to by people maybe starting on their journey with FND, somebody who's never heard of it before. Maybe it might be a partner, a mother, a child of somebody who has it, or somebody who's just actually trying to improve their knowledge of disability and FND so that they can be a great ally. 

So, on behalf of everyone, thank you so much, Simone. Really appreciate your time.

SR       

Thank you so much for having me, and I hope you all enjoyed listening.

CB      

If you are concerned about any of the subjects discussed in the podcast, please follow up and seek support from your health care practitioner. If you enjoyed this podcast, please share it. Leave a rating and review to help raise awareness of non-visible disabilities and the Hidden Disabilities Sunflower. You can also follow and subscribe to the Sunflower Conversations Podcast.

VO      

if you'd like to share your Sunflower story or conversation, please email conversations@hiddendisabilitiesstore.com. Find out more about us, or listen to this recording again by checking out our insights page at hiddendisabilitiesstore.com. You can also find us on Facebook, Instagram, Twitter, YouTube and LinkedIn. Please help, have patience and show kindness to others, and join us again soon. Making the invisible visible with the Hidden Disabilities Sunflower.

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