Full transcript: Grange Hill, voodoo and chronic pain - March 2 2018
This is a full transcript of the 2 March 2018 Grange Hill, Voodoo and chronic pain podcast, as presented by Kate Monaghan and Simon Minty.
KATE - It's the Ouch talk show for March, the original round-table disability programme where we never let our disabilities get us… er, anywhere really. I'm Kate Monaghan.
SIMON - And I'm Simon Minty. We've got our guests already lined up, and let's say hello to Sheila Chandra.
SHEILA - Hello.
SIMON - People may remember you from 'Grange Hill' and for the song, 'Every So Lonely'.
KATE - [sings] Ever so lo lo lo lo lo lonely. Yeah.
SIMON - We can't play that because of copyright. Is that even close to the original?
SHEILA - It's a very credible version. Thank you very much.
KATE - Yes!
SIMON - Thank you very much. We've got you here, because you're a life coach for creatives but you've had to find a different way of doing this because you have difficulty for talking at length. Tell me a bit about this.
SHEILA - Yeah. I was a singer, as you pointed out, and 'Ever So Lonely' was a top ten hit around the world in 1982 and I went on to be a pioneer in the World Music field and had three albums out on Peter Gabriel's Real World label and stuff. So I was using my voice a lot. A lot. Unfortunately I had a botched operation where they scarred one of my vocal cords as they were intubating me and I carried on singing, but I had limited singing stamina, and pain when I talked to a degree.
It was manageable and then I developed burning mouth syndrome in 2010 and the neurologist said it was probably because I'd borne so many years of pain with scarring on my vocal chords. It kind of tripped my nervous system into pain mode.
KATE - I mean, we're going to come back to all of this in more detail, especially this idea of pain and chronic pain and stuff. But…
SIMON - It's an hour show.
KATE - Yeah. Are you going to be okay to…?
SHEILA - Yeah, I am. I do have to talk sometimes because otherwise my voice box would completely atrophy, which obviously I don't want to happen. So what I do is I put time aside where I'm silent for two or three days, then I have a little bit of talk time, like today, and then I'll go and bare the resulting pain for the next two or three days, but that's in my diary.
KATE - Well we'll come back to all of that of course. But we're also joined by Beth Rose from the Ouch team.
SIMON - Yay!
BETH - Hello.
KATE - Who's here to round up a few bits of recent news and tell us all about the Paralympics which is going to start soon, the winter Paralympics of course. Have you packed yet Beth?
BETH - I've laid everything out on my bed, to say I'm going, so I'm going to South Korea, laid everything out, it's all kind of in order, it's written on a list, and then I just put it on the floor in my room.
KATE - Great.
BETH - So it's not in the bag yet, but it's close.
SIMON - Because the Olympics has already happened, and I thought that did have some disabled people, because there were a lot of people falling over I noticed.
KATE - If they weren't disabled to start, so they fall over and then they…
BETH - They might make the team next time.
KATE - Yeah.
SIMON - And Julia Buckley is a journalist who has written a book about how she's been cured of the chronic pain that she's had for years.
JULIA - Hello.
SIMON - Hi Julia. Tell me about that?
JULIA - Well, that's a very long story. So I have…
SIMON - Okay. In one sentence? [laughs]
JULIA - I had chronic pain for four years, looked at other cultures and how they treat chronic pain, the mind, body connection, that kind of thing, and managed to get better.
SIMON - That's amazing. We're going to come back to that.
KATE - Yeah, we're very much looking forward to hearing how you did that. But Simon, it's March, what have you been up to? Anything fun? Anything interesting?
SIMON - I have a confession, and an apology.
KATE - Okay.
SIMON - A couple of shows ago you talked about going to the doctor's.
KATE - Oh, do you mean an apology to me?
SIMON - Yeah.
KATE - Oh, exciting!
SIMON - Make the most of it. It's one of those…
KATE - It's never going to happen again.
SIMON - And you, I can't say the word, infantile-isation…
KATE - Infantilisation.
SIMON - Infantilisation, so they treated you in a certain way?
KATE - Yes, so I was going for a smear test and the nurse who did my pre-op..
SIMON - Or pap test, for people in America.
KATE - Yeah, but the nurse who did my pre-op assumed because I had a disability that I never had sex. But yeah, we went into this in a lot of detail a few podcasts ago.
SIMON - And I remember being very surprised…
KATE - Yeah, you didn't really believe me, I don't think.
SIMON - Well, also I couldn't quite work out why you didn't push back. You're a smart, confident person. So that leads me onto my story. And I was flying, and you go through security and if you're on a mobility scooter you don't go through the scanner, you have to go to the side. And I was on my scooter, so basically they pat you down, they search you, they do a hand search. He came over to me and he said, "Hello there, young man." And it oh, just rose up inside of me and… But I didn't say anything.
KATE - Oh, really?
SIMON - And I'm annoyed that I didn't say anything, and I want to think, well he's ten years older than me so technically he's correct. And then I want to think you're in airport security, they don't even like jokes there do they? So I thought… But I became a passive recipient, and I'm meant to be pretty sorted about this disability stuff.
KATE - Well yeah, you are, you're a disability confident man. Young man. [laughs]
SIMON - Well yes… Less of the laughing at that bit.
KATE - So how old are you?
SIMON - I'm nearly 50.
KATE - Okay. And how old was the guy who was patting you down?
SIMON - 60? So I got off my scooter and I certainly tried to be defiant but ultimately I was passive and… that was the bit, and then he started making a big song and dance about bringing this chair, making it into so much. And I said to him, "I don't need a chair," and he said, "It's for me, I've got a bad knee." So that all got a bit awkward. But just afterwards I thought, why didn't I push back? Sheila?
SHEILA - You were both in a situation with people who had authority, had official authority over you, and of course you feel vulnerable because they are the person who's supposed to be guiding you through that experience. And when they have their own biases it's very difficult to push back.
KATE - Listen to that life coaching from Sheila there.
SIMON - I was talking about this earlier. So I'm in the shop and I can't reach something and I ask someone to pass me something, but I become a slightly different character and I'm annoying myself that I'm doing that. Rather than just saying, "Please pass me the yoghurt," I'm like, "Oh, please…" And the 'oh' becomes a bit friendly and there's just a weird thing that goes on. You're nodding but you presumably can reach things can't you Kate?
KATE - Well I can, but not when I'm in my wheelchair.
SIMON - Okay, so when you get in your wheelchair do you then get patronised?
KATE - Yeah, yeah, yeah. Definitely. And also I become more helpless. Holly always says that, my wife always says, "You always become…"
SIMON - You buy into it.
KATE - "You forget that that you can get out and do your own thing. So you just sit there for a bit."
BETH - "Can you get me a drink of water?"
KATE - Yeah, exactly. And she's always like, "No, get up." [laughs]
SIMON - Anyway, I thought about you when I was flying and I was thinking I can see why it happens, and you're right, Sheila, it's that power thing.
KATE - Yes.
BETH - Do you think it was power or do you think he was just being jovial?
KATE - And he didn't want to make it awkward?
SIMON - So I like that Beth, because that's the point of view and most people go, "Oh come on, he's being friendly," but…
BETH - Was it done in a way where it was more patronising?
SIMON - My bit would be, average size, not visibly disabled man going through, would he have said, [enthusiastically] "Hello there, young man"?
BETH - Probably not like that, no.
SHEILA - Not to a 50 year old.
SIMON - No.
BETH - But you do look quite young.
SIMON - Good answer. I've been on aeroplanes in the posh bit…
KATE - But obviously as a short person maybe he thought you were… ten? Is that what was going on?
SIMON - "Hello little boy!"
KATE - Yes. [laughter] No? Is that not what was going on?
SIMON - No. But people call me sweetheart and I don't know if they're being friendly… And if you turn round you become aggressive, but actually it's slightly patronising.
BETH - Yes. I think within the building of the BBC where we are now I think everybody probably calls each other sweetheart don't they?
SIMON - Okay, so environment, yeah.
KATE - Luvvies.
SIMON - Yeah, environment makes a difference.
KATE - Anyway. Shall we get back to the plot now Simon? Young man?
SIMON - Yes, sexless person. [laughter]
KATE - Julia, let's have a chat to you. Now, if you don't mind me saying, you're in your mid 30s, as we are all talking about ages. Is that accurate, mid 30s?
JULIA - Yeah, I like to say that. That's accurate.
KATE - Okay, great. And you've been a journalist for most of your life. What kind of journalism do you do?
JULIA - I do travel now. I trained in news and then I started in features and then I moved over to travel because I love going and meeting new people and going to new places.
KATE - Is it as glamorous as everyone thinks it is?
JULIA - There are moments of glamour. So I was just in Bali and I went on holiday, but I did spend one night at the Four Seasons and it was amazing, and they trussed me up in a hammock and sung me a lullaby and rubbed essential oil on my forehead and I fell asleep and snored and it was amazing.
KATE - Wow.
JULIA - So yeah, there's definitely glamour. That was a holiday, but it's very hard work as well when you're actually going around and having to see 10 museums to pick out the one that you want to write about. And constantly having first date conversations with people as they're taking you round places. Like, it's quite tiring.
KATE - Yeah, you can't just do your own thing.
JULIA - No, not at all.
KATE - Yeah. Now, before we come on to the reason why you're here and the whole disability thing we've got a little question for you all. What animal is this?
KATE - Okay, so there is our mystery animal noise. Does anyone want to take a guess at what that might be?
BETH - Julia?
JULIA - Some kind of exotic wild dog?
KATE - An exotic wild dog? Okay. Sheila?
SHEILA - Some kind of seal?
KATE - A seal? Beth?
BETH - I think I overheard a conversation in the news room about what it was.
KATE - What do you think it is then?
BETH - I think it's a zebra.
KATE - You are exactly right, it is a zebra.
BETH - Good eavesdropping.
KATE - Yeah, you had a little insight there. So zebras are the mascot for Ehlers-Danlos syndrome. Julia, do you know why the zebra is the mascot?
JULIA - I did know, I did know, but I have no memory, thanks to all the painkillers I've taken. [laughs] So I've forgotten, I'm so sorry.
KATE - That's fine. It's because it's the kind of disability where you look at lots of different symptoms, doctors hear the horse shoes and say it looks like a horse, it sounds like a horse, and doctors always go for horse, but actually it doesn't have to be a horse, it can be a zebra.
SIMON - We've stunned the audience.
JULIA - I'm feeling so ashamed that I've forgotten that.
SIMON - There'll be a lot more difficult questions coming up Julia.
JULIA - And that's a self-hating EDS person.
KATE - So in some ways a zebra is quite apt for your story isn't it? Can you tell us a bit about how you were diagnosed and what happened to you?
JULIA - Yes. So I had been in pain basically my whole life I would say, for at least as long as I can remember, and I had all the normal EDS things, it was written off as growing pains, I was told at one point I was making it up when I was complaining about having jaw pain. I had to have extra time for my A levels, I had to dictate my finals, I had to dictate my dissertation, nothing made sense. I was exhausted, constantly in pain and people were talking about ME, fibromyalgia, they went through all these things. And then they would say, "There's nothing wrong with you, it's fine," so I thought I was just lazy, and obviously you can't tell what other people are feeling, so I thought I was just unfit and lazy.
And then I moved to America for 18 months and decided that I was going to get fit because I was in America, I was in Vegas and everyone was very beautiful, and realised that I couldn't walk for more than 10 minutes without one of my knees giving out. So when I came home I went to the doctor and he said, "Oh, you've just turned 30, this is part of the ageing process." And as we were just talking about person in authority I was like, oh, okay yeah, I'll take that ibuprofen gel and go away and never bother you again. And then a couple of months later I started a new job and my arm just went. And I went back to the doctor and I think I was feeling confident with my new job, so I said, "This arm needs physio and so do my knees because it's not right to be 30 and not able to walk."
And it was kind of like he did a double take and looked at me for the first time and said, "Oh, I think you may have something called Ehlers-Danlos syndrome or Marfan syndrome. Don't look them up on the internet, you'll be very scared, but I'll refer you." Yeah, and six months later I was diagnosed. And then two months after that I was just working at my desk one day and I was getting worse and worse, all my symptoms, and I reached out for a cup of coffee and it suddenly felt like someone had stabbed a carving knife up my armpit, like there was a fire under my shoulder blade and like my arm had been doused in petrol basically and there was just a fire going from my fingertips right up to my neck. And that didn't stop for four years.
KATE - So you had all this pain and so you obviously thought, I can't live with this. So what was the start of your journey to try to get better?
SIMON - To manage it, yes.
JULIA - Oh, well I went through the medical system for the first two years and I actually found that the EDS diagnosis completely hampered any recovery because everyone that I saw, whether that was a rheumatologist or a neurologist or an orthopaedic surgeon, or even a stomach… a gastroenterologist that I was sent to in case there was anything, or a cardiologist, I went through everyone and they all said, "Oh no, this is just to do with your EDS, it's just a progression, you're never going to get better, you're never going to work again." And I was told, "Think of jobs that you might do that don't involve your hands," and, "What would you have done if you hadn't been a journalist?" And I said, "Oh, I'd quite like to be a lawyer." "Well, you can't do that. What about something that you don't have to use your hands for?"
And my GP who I ended up with was amazing and he agreed with me that this was an accident because it had happened from one second to the next and surely you can recover from an accident, but everyone else just blanket, "No, no, no, this is just a flare up of your EDS that's lasting." Six months, one year, 18 months.
KATE - So what is that chronic pain then? How did it go from sort of a stabbing pain into something that didn't go away?
JULIA - You mean like physically, what happened?
KATE - Yeah, what is chronic pain compared to acute pain?
JULIA - So, I basically had two types of chronic pain, I had the normal EDS pain anyway, then this they think was an accident because our joints are so loose. So they think a joint in my neck slipped and fell onto a nerve. And so then when you injure yourself the acute pain is your nervous system sending alarm signals up to your brain and your brain is interpreting that as pain. And normally that will get better in up to three months. But with chronic pain that alarm system doesn't turn off, it gets stuck on the one position, and so it's still sending messages up to your brain saying that there's a problem, and your brain is still reading it as pain, even though the injury itself has recovered, and so there's actually nothing physically you can do to make it better.
SIMON - I'm slightly ignorant. I work with someone who's got EDS, being Kate, but just the bit that we've learnt, it's very variable. So when they're saying, "Oh, it's just another flare up," did you believe them, or did you feel they're just putting everything into this category?
JULIA - It's hard, because I felt like I was being gaslighted a lot of the time, so it kind of depended on how strong I was feeling.
KATE - What's gaslighted?
JULIA - Gaslighted was when they were telling me things that I felt didn't make sense. But again, going back to the figure of authority, these are doctors and psychologists telling you, "No, this is just a flare up, no you're never going to get better." And I remember at one point I was told by the psychologist on my pain management course that I was too angry, and the physiotherapist said, "You've come on the course too early because you haven't accepted your disability." They were telling all of us on this course, we all had EDS, that you're never going to get better and the pain is probably going to get worse and you'll just have to manage it.
KATE - So you didn't accept this, and you decided to go off on a… Well, how would you describe it? A sort of journey of healing?
JULIA - Oh yeah, a little healing…
KATE - Yes, spiritual faith, like…
JULIA - Yeah, so I had a really strange encounter with a guy in LA called Kevin. I was at the end of my tether and I was very depressed as well and I was off work for two years and I didn't have any money and I'm living with my mum and everything's awful and I couldn't see a way forward. I have a friend who lives in LA who said, "Do you want to come and cat-sit for three weeks while I go home to London?" And I thought, "Oh I'll have a nice holiday and see how I feel about myself and my future."
And I felt really ill obviously coming off the plane, I felt like I was dying, and booked a massage with this guy called Kevin who was an angel healer. And I booked it thinking that I could laugh at him, because you know when you're in so much pain and you just want someone to be worse off than you? [laughter]
KATE - So you thought, angel healer…
SIMON - And also… Kevin? That's kind of an unusual name isn't it, especially for America as well.
JULIA - I know, there's just so much gorgeousness about it. Yeah, but I thought I can Facebook this later, this is going to be fine. And also, on a serious note, I thought someone who says he's an angel healer is not going to injure me with a deep tissue massage, which again, because it's an invisible illness so many people if I'd had massages would really dig in, because I'm a big person as well. So yeah, I went to see him and he said, "Angels direct the way that I massage people," and I was like yeah, this is hilarious, I'm going to love tweeting about this later. And I walked out 90 minutes later with my pain levels massively reduced, feeling better than I had in two years.
BETH - Wow.
JULIA - Yeah. So I didn't believe in angels at that point…
KATE - Yeah, I mean what, how, why? What did he do?
JULIA - He did totally different things than anyone else, he didn't do the kind of swishy motions on your back, he flipped me straight over and he went straight in kind of under my armpit along my ribcage which no one else had done before.
SIMON - But he is touching you, he's not doing that thing where people suck the pain out and throw it away, he was really manipulating you?
JULIA - He was touching, but he was also doing things like he has crystals that he would just put on you and kind of rub you a bit with a crystal and then he would just put his finger on me and kind of do kind of vibrato.
SIMON - So you're smiling as you say this, so even in your head you're like, this worked for me, but it was strange at the time?
JULIA - Yeah, it sounds mad and it sounds like it's completely impossible, and he was also about twice the price of a normal massage therapist.
KATE - Of course.
JULIA - Of course.
SIMON - That's painful.
JULIA - Oh, and he has a tattoo of Jesus on his arm that doesn't look like Jesus, it was just this really weird man face and I said, "Who's that?" and he was like, "It's Jesus," obviously. [laughs]
SIMON - But it's a double whammy, the idea you go in with pain, come out without, but you also had to get over a mental thing here because you would go in cynical, that he won you over.
JULIA - Yeah, but I think it was much easier with him than it was with other people that I was to see later, because he was doing something physical, so it's very easy to put it down to, oh that was just the best massage of my life.
KATE - So it wasn't just Kevin was it? So he kind of started…
JULIA - No. So he started me and I thought, if this guy with this Jesus tattoo has done more for me in 90 minutes than the doctors have in two years I'm going to go round and look at other people. Because I was very sceptical and I thought I'm not going to write people off when they say, "Oh we can do this."
And I also by that point had been really looking at the science of pain and looking at psychology and the mind body connection and the patient/doctor relationship as well and how that can affect symptoms like pain. And the answer is, they can affect it a lot, and lots of scientific studies show that if you get on with your doctor or if your doctor is nice to the people around you it can affect everything from your pain levels coming out of an operation to like, chronic pain levels or blood pressure levels. Things like that.
So I decided to look at different cultures, also because I had my background as a travel journalist and I missed it. That was part of my identity, so I felt like I was kind of getting back to who I was, to look at other countries and other cultures and see how they treat chronic conditions.
So I saw some faith healers, as you do, but I also went to places like Bali to do a kind of 'Eat, Pray, Love' thing which didn't work out at all, it was quite bad. I went to Haiti because I thought the voodoo there is really kind of the ultimate expression of the placebo effect, so I got exorcised by a priest.
KATE - So what worked? I think you…
JULIA - After my voodoo exorcism I was completely pain free for 48 hours which was extraordinary.
BETH - What do they do in an exorcism?
JULIA - He pulled out a demon from my neck that looked like a black cat, which was really upsetting because I love cats.
KATE - Did you see it?
JULIA - No, no, I didn't see it, I was too busy. I think I wet myself actually, I've never been so scared in my life. I was basically in this dungeon in this hotel by myself with the hotel owner who turned out to be a voodoo priest. It all happened really randomly.
SIMON - So I have to ask. I hear people go to a chiropractor and they go in and then their back pain is unbelievably sorted and it's amazing. And I get that, and you said when Kevin's touching you and manipulating you, but this is another level isn't it?
JULIA - Yes, and this is totally about the brain and the mind and everything. Or maybe it isn't. I don't know, maybe there are these spirits and maybe I did have a demon on my back, but I was completely pain free for 48 hours and I was praying to the voodoo spirits that had supposedly helped me and then it just came back.
And then it came back in the most violent way imaginable and I started having all these symptoms and getting worse and worse and worse until [laughs] according to the ambulance despatchers I was having the symptoms of a heart attack. I wasn't having a heart attack, obviously they dispatched an ambulance and they were like, "No, your heart's fine."
SIMON - We need to bring in Mya Choudry who's down the line. She's from the Ehlers-Danlos Support UK. Hi there Mya.
MYA - Hi.
SIMON - You're hearing some amazing tales. Sort of the brain, the mind. How does this work? What's your view on this?
MYA - Well, to be honest, being on the helpline for over two-and-a-half years I've heard all sorts, so none of this shocks me, but I do think that every single person has a different mechanism that connects. Obviously like Julia said about the mind and body, and different things work for different people. Some people who I know that do rock climbing, and other people that I know that do ju-jitsu. So it's just not a matter of this is a particular technique, it's a matter of this has worked for Julia. That's what I think.
KATE - Mya, I mean is what we're saying here that pain is mainly in the brain? Is that where all my pain is coming from?
MYA - Well obviously if you do injure yourself then it would be within that area, so it would be acute as a result of an injury or some kind of inflammation for example. I think going back to what Julia was saying about having an alarm bell switched on in the brain is something that I do agree with.
So we have like a fight and flight response that gets triggered and it's similar with pain, you're getting a response that gets triggered but with people with EDS they are hypersensitive to pain, this fight and flight response stays triggered, and when it stays triggered it doesn't switch off. So the body's in this constant state of anxiety, pain, alertness, and when you're in that state it can cause biochemical changes in the long term to the brain that can exacerbate your problems.
SIMON - So Mya, while you're here, so a few years ago, perhaps before I started working with Kate I hadn't heard of Ehlers-Danlos syndrome and now it seems virtually every other guest we have has a connection. So what's going on? Is there more diagnosis? What's happening Mya?
MYA - We do find that it's coming out of the woodwork, but I think this condition's been around for a very long time, it's not like a fad that everybody's just suddenly jumping on the back of, it's due to everything that people are doing, like Julia, who are raising awareness and people are getting to know about it.
I think the biggest issue is that when doctors are trained they have either one lecture about genetic conditions or they go into the molecular side and very basic information about common genetic conditions. And if you're a GP you are literally general, you're not going to know, and when people put EDS into a category they put it into the category of rare in their heads and they think oh this is rare, and the only thing that they associate with EDS is one picture of a person with stretchy skin, pulling their skin away from their face. And they say, "Oh, if someone's got this super stretchy skin this could be a possibility," but that's only one of the 13 types of EDS.
SIMON - I didn't know there were 13 types, that's actually very useful. Do you think perhaps, as you say, we've always had it but it was misdiagnosed or people would put it under something else, and now because we're getting a little bit smarter, is that what's happening?
MYA - Yes, and no. I think obviously 13 types of EDS, the majority of them are really rare, really, really rare, the three that are the most common, or let's focus on the most common which is the hypermobility EDS, which is the one that Julia has, that's the most common. So we say that one in 70 in the population is considered to be hypermobile, so that's flexible, which you can have no problems associated with your hypermobility, you can be fine, but we believe that a percentage of that one in 70 actually do have a lot of multisystemic problems, which is chronic pain, fatigue, dislocation, gastro problems, gynae problems, neural problems.
Then alarm bells ring and you think, oh God, this could be something else, this could be a connective tissue disorder, but when you have all of these symptoms wrapped under other bigger diagnoses like fibromyalgia, ME, chronic fatigue syndrome, that's the common stuff that the GPs and other general doctors know about. And even consultants and rheumatologists, that's what they know about, so they wouldn't immediately jump to EDS, even though EDS, the hypermobility type, the most common type, is actually quite common.
KATE - See, it's that zebra thing.
MYA - Yeah, it's really common.
SIMON - Thank you so much Mya.
KATE - There's our zebra. Zebra alarm going, everybody.
SIMON - That's how we tell guests just to pause.
KATE - Yes, instead of playing them off, like the Oscars.
SIMON - So we're going to do something a little bit quirky and special here. It may or may not give us a deeper insight into chronic pain. As we know, Kate has EDS too.
KATE - Yes I do, and chronic pain.
SIMON - And we've got her to draw a picture of pain.
KATE - What pain feels like to me, is what I was asked to do.
SIMON - Kate, could you show it to me? I can't quite see it.
KATE - Yes. So I'm quite the artist, as you will all appreciate here.
SIMON - We need to describe this.
KATE - Yes. So Simon, would you like to…?
SIMON - In the centre, quite dominant, is a big swirly circle, or ball, with lots of colours, red, yellow, but quite a lot of dark and black. And then around the edge there are six or seven individual pictures. So there's a stick man, there's someone in bed sleeping. Oh my goodness, what is going on?
KATE - Yes, so can you describe what we've got here? What do you think some of these are?
SIMON - That's a good question. So okay, the person who looks like Linus out of the Peanuts cartoon looks like a smelly stickman with…
KATE - Which one's that? This one?
SIMON - Yeah, with the little wiggles all coming off him. What does that mean? You haven't bathed?
KATE - That is me, that's me being restless.
SIMON - Ah, fidgety?
KATE - Because… Fidgety.
SIMON - And you're fidgety now?
KATE - Because you can't stay still for very long, so you're fidgeting all the time.
SIMON - A lot of unhappy faces, unhappy smiley faces, with someone in bed?
KATE - Yeah, that's me not getting any sleep, so being unhappy.
SIMON - Can I have it a little bit closer, because it's a long way away? So there's one that looks a little bit rude. I don't know what this is. Is that a hammer?
KATE - Yes, that's a hammer.
SIMON - It says 'bang, bang, bang, bang'. It doesn't look like a hammer, it looks like something else to me.
KATE - No, that's a hammer, definitely a hammer.
SIMON - So that's what it feels like?
KATE - Yeah, like some of it feels like a hammer banging on you.
SIMON - And then there's a picture of Lucy from Peanuts with long hair and in a cloud. What's that one?
KATE - That's me being isolated in a bubble, because you have to cancel plans quite a lot and not do stuff that you want to do.
SIMON - Okay, and then there's a gift, it's like a… Oh no, is that a television with multicoloured, three colours…?
KATE - It's a television.
SIMON - And books.
KATE - Yeah, so that's when I can't go out I have to do a lot of sitting in front of the television and reading.
SIMON - Then there's a little baby with chicken pox.
KATE - No. Again, that's me. And then that's all the areas that's like got this dull, annoying…
SIMON - These are red blotches.
KATE - …just never-leaving pain here.
SIMON - And we saved the best one 'til last. It's someone's face who's got bright red, orangey, fiery hair. It's flying out of the top of their head.
KATE - Yes, so that's what I feel like sometimes when it's all too much I feel like my head is exploding. Head exploding pain, that's what I call it. What do you think guys? Sheila, you have chronic pain as well. Does any of this feel…?
SHEILA - The TV and the books thing, absolutely. There are long periods where I can't talk which means I can't socialise with my friends, so I understand the bubble around you and the TV and the books. And yeah, I think that's a very accurate description of pain. You've got lots of big, black ribbons and red ribbons in that sort of pain snarl up there in the middle. I completely relate.
SIMON - Julia?
JULIA - I think it's perfect. I think you being in a cloud, isolated, is perfect. [emotionally] I'm just… so sorry that I'm better and I haven't found an answer for everyone. I'm so, so sorry.
KATE - That's really interesting that that's upset you.
SIMON - You're all right Julia, you don't need to take this one on the chin. Are you okay?
JULIA - Yeah, yeah I'm fine. Thanks.
KATE - So why does it upset you so much?
JULIA - Because I can remember what that was like, and I can remember no one believing me and thinking it would never get better and being told it would never get better. And I'm so lucky that I'm out of that now.
KATE - So what happened then? So how did you get better? Tell me, tell me, I need to know.
JULIA - This is the most embarrassing confession of my life. For starters I would say I'm not telling everyone to do what I did at all, and I would also say I don't think it's necessarily this one thing that did it, I think it was the fact that I was going round the world for two years trying all these different things and there were terrible lows as well as a few hopeful highs. But I think the whole process, I'd done so much work on myself and really thinking about mind, body and all that stuff, that maybe it just came to the boil in this place, which is my way to put off saying what happened which is I went to Brazil to a faith healer called John of God who's Oprah Winfrey's favourite faith healer and I got better from one second to the next.
SIMON - What did John of God do?
JULIA - I just did the silent meditation, and what they call spiritual surgery where you just sit in a room and close your eyes and they say.
So he says that he channels tens of thousands of angels basically, but they're all people who are dead and want to help the living supposedly. You go in front of him, hold his hand, he stares at you. He said something to me in Portuguese, but obviously I don't speak Portuguese, so I had to do loads of meditation then you have to go for 24 hours and just lie down in a hotel room, not talking, not doing anything.
And then you have to stay out of the sun for seven days and then you go back in front of him and hold his hand again. And I was much worse by this point. All my symptoms were like on red alert and I was so upset to be there. The second week I went to do meditation every day. I was getting much worse because I was having to sit in these five-hour meditations, and about 10 minutes from the end there was a tap on my knee and one of his acolytes, this astonishingly good looking man, was there brandishing this pot of white chrysanthemums. And he gave it to me, with the message, 'congratulations'. And then he said, "Close your eyes, finish the meditation," and we got up at the end and it took a couple of minutes to realise that I had just jumped up from my seat and I was bouncing around saying, "What do I do with the flowers?" And then I just had no symptoms.
SIMON - And you have been pain free ever since?
JULIA - Since then, yeah.
SIMON - And you've written about this, so if someone wants to read it, because there's loads more stuff in it, but you have written a book, so what's it called?
JULIA - It's called 'Heal Me'.
SIMON - Fantastic. Thank you so much Julia.
JULIA - Thank you.
KATE - Thank you, I really enjoyed reading it.
SIMON - Do stick around. So we mentioned this earlier, we have Beth from the Ouch office who is heading over to the Winter Paralympics. What should we be expecting Beth?
BETH - Well, you should be expecting quite a lot, quite a few medals potentially, because it turns out GB is pretty good at Winter Paralympic sports.
KATE - Oh really?
BETH - We are really good, like better than the Olympians. We should get more medals. So at the Winter Paralympics there are six sports, so a couple less than at the Olympics, but we've got skiing and all the many variants of skiing, so downhill, slalom. Nordic skiing, which is cross country, and biathlon which involves some shooting. There's ice hockey which is played on sleds. There's curling which of course we're very good at, and also there's snowboarding which is the second time snowboarding's been at the Winter Paralympics. And the first time GB has a team that are going out there.
KATE - Oh. And are we any good at snowboarding?
BETH - We are really good. So we've got three guys going out there, Owen Pick, Ben Moore and James Barnes-Miller and they're in different categories. So Owen is in the lower limb category, so he had a leg amputated after he was wounded in Afghanistan, and Ben is in the upper limb category, he had a motorbike accident and damaged his arm, but they all compete in a similar sport. In Bordercross, which is that great sport where they go out four at a time and they race down this hill…
KATE - Oh yeah, I enjoyed watching that.
BETH - …and try and, not trip each other up, but it's quite tactical. There's falls all over the place, there's jumps. So that's one, and they also go in the banked slalom, which is basically like slalom and skiing, but on a snowboard.
JULIA - Is there no Big Air?
BETH - There is no Big Air, not at the moment, but there's jumps and tricks in the Bordercross.
SIMON - Where do they practice? Where's competition beforehand? Is this Paralympics the first time and the biggest stage they've been on?
BETH - Well, they all say it's not the biggest stage, because with a lot of snow sport people, especially kind of snowboarders, they're quite new to the Olympics and the Paralympics. So for them it's kind of like the X Games. In Canada they have like the Big White, it's those kind of things they go for. But because the Paralympics have such a huge kind of worldwide global thing about them they're feeling the pressure, and they're also wanting the medals.
SIMON - Big audience now.
BETH - Big audience. We're generally in the top 10 for most of the sports, so medals are really…
KATE - Why are we so good at it then, because we don't have any snow? I mean today is a snow day.
BETH - Today's unusual.
KATE - Very unusual, but we don't have any normal snow.
SIMON - There's a lot of snowflakes around aren't there?
BETH - There are a lot of snowflakes. Well basically our teams are never in the UK, so they spend half their year travelling the world. Like you look at where they've been, and they go to Chile, France, Austria, Switzerland, Canada, America. They are just travelling all the time. It's a bit different for the curlers. Basically the GB curlers are all Scottish, so they train most of the time in Scotland, as you would, but everyone else is just kind of flung across the globe.
KATE - So who's our best chance for gold then?
BETH - This is a really tricky question. I would say in the downhill a really young skier called Milly Knight. So she is 19 now but she was at Sochi, she is the world champion in downhill. However, as she crossed the finish line to become world champion she had a massive accident, massive crash, she tripped on the skis. She's blind, she's 95% visually impaired, and she skis with a guide but they're not tethered, they just have a Bluetooth headset so they communicate.
So as they crossed at like 115 kilometres an hour her guide Brett stopped and saw that they'd won, and Millie didn't stop and just went straight into the crash barriers which deflated because they're airbags but then re-inflated on top of her.
SIMON - It sounds horrendous.
BETH - So she was crushed, scraped all her face.
KATE - When was this?
BETH - This was a year ago, and on the same course that they'll be racing at the Paralympics. She was such a confident skier but it completely floored her psychologically, she suddenly had like the absolute fear of going down a mountain at speed. So she's one of our hopes, but it kind of depends.
SIMON - I may have misinterpreted, but was there a human error in that?
BETH - They're not entirely sure what happened.
SIMON - Okay.
BETH - It wasn't the guide's fault because they'd crossed the line, she should have come to a stop. As far as they can work out, and interestingly, none of the TV cameras caught it, they think she just kind of caught an edge and it just like, you know.
SIMON - Yow.
BETH - Also, when they go at the very last part of a race they are very much like go, go, go, just straight down, speed. They kind of switch off a bit because they've done all the technical getting round the gates, so she probably wasn't thinking 100%, they'd got to the end and it was just one of those things. So that's a bit of a tricky one.
SIMON - It's been nagging in the back of her mind.
BETH - Yes, she thinks about it because she doesn't know really what happened. So she's one of them. The other is a skier called Kelly Gallagher in the same category as Millie, and you might remember Kelly from Sochi, she won our first ever gold medal in the alpine skiing. She was all over the news because she was so excited. She's had a bit of a tumultuous four years. She's had a couple of crashes, a few injuries, but she is now back. And then there's a third skier in the same category who has suddenly just kind of come up.
KATE - So could we be having gold, silver, bronze?
BETH - Yeah, potentially. I mean, we are seriously good at the alpine skiing. Curling, we got bronze last time so that's good. Snowboarding, it's our first team at the Paralympics so they could go either way, but they're all top…
KATE - Who should we be staying up for? Because their timing is so bad for us isn't it?
BETH - The timing is tricky, we're nine hours ahead, so it's not great. I think the curlers, I think they've got a shot, I think the skiers, I really think we're going to get a medal.
SIMON - Will you be reporting in for Ouch? Should we be checking the website or audio or what?
BETH - Yes, all of the above. So check the BBC News website. We've got features, videos, audio. We're going to try and do an almost daily podcast - I'm loathe to say daily just in case - which will be chatty.
KATE - Will we be hearing you on that? Will you be coming to us?
BETH - Yes, so I will be producing it, presenting it, and coming on board with me will be JJ Chalmers who's one of the sports reporters, Kate Grey who's another sports reporters. We're going to have a really nice chatty time, it's not going to be hardcore sport.
SIMON - What's it going to be called?
BETH - Well, this is up for debate. So maybe you can help me out. So one idea is PyeongChat.
KATE - Oh, nice.
BETH - Because it's being hosted in Pyeongchang.
KATE - PyeongChat, I like that.
BETH - Another one is Paracast.
KATE - No.
BETH - That's as far as we've got. I mean, any suggestions?
KATE - PyeongChat is the winner.
BETH - PyeongChat. I think it's quite good. Credit to Damon, the editor, who came up with that one, in a text last night, randomly. "What about PyeongChat?"
KATE - I really like that. If you want me and Simon to nip along, you know?
BETH - Er, there's quite a long queue, but sure, join it.
SIMON - You've been talking about this for months haven't you Beth? I remember you told me, every weekend, I keep checking.
BETH - I know, it was June or July and I was already getting the fear about it and now we're literally, what, hours away before we get the really long flight?
KATE - So if listeners have questions?
BETH - Direct them to me. So you can Tweet @bbcouch, any questions, I'll try and find them out. Facebook, just message us, or you can email firstname.lastname@example.org and I'll endeavour to track down the right person.
KATE - So when does it begin?
BETH - 9th March is the opening ceremony, and then all of the fun and the competition starts on 10th.
SIMON - How long does it go on for?
BETH - It goes on for nine days, so it's from 9th to 18th March.
KATE - And when do you head off?
BETH - On Sunday, which is 4th, at five to one from Heathrow, Terminal 5.
KATE - Good to know.
SIMON - Very well done. We asked you a lot of quick questions. You should do a podcast… Oh, you are?
KATE - Now, let's just talk social news for a minute, because you're not just hear to chat about the Paralympics.
BETH - Sadly not.
KATE - We love labels, it's always good to have a label for things, and I hear they've medicalised a well-known social media phenomenon now?
BETH - They have. So…
KATE - 'They' being the amorphous people in charge.
BETH - Researcher-y people, yes. So obviously everyone likes to take a selfie.
SIMON - When you say 'everyone'…
BETH - Well, like a lot of people, most people, probably of a certain age.
KATE - You love a selfie Simon. I'm forever seeing selfies of you popping up all over the place.
SIMON - [laughs]
BETH - It's kind of one of those things now isn't it? I've tipped over the edge into hating doing them, but I still do them, annoyingly. Yes, so there's this new…
SIMON - Condition?
BETH - Category. I don't think it's…
SIMON - Is it a disability? That's the interest.
BETH - I would say not at the moment, but maybe it's a suggestion of one, called Selfitis, which is basically where you take too many selfies on a daily basis and you post them on social media to get likes and boost your self-confidence. So basically, Selfitis first appeared in a spoof news article in 2014 in America. It's like proper fake news becomes real, and a few researchers at Nottingham Trent and a management company in India decided, let's actually see if this is a real thing.
So they've spent the last four years researching in India because they've got the highest number of Facebook users and the most number of deaths from people trying to take selfies, kind of in front of a train or on a mountain, you know.
SIMON - Oh, my goodness.
BETH - So they researched it and they claim that there is this thing called Selfitis where basically if you've got low self esteem you do it to build yourself up to other people. It can kind of promote body dysmorphia because you take a picture and you think, "oh my hair looks rubbish there" or "I've got a big nose" or "my skin looks terrible," and it becomes a vicious cycle.
SIMON - But presumably there's also people who are just supremely confident and love themselves, it's not always low confidence, it could be I just love myself.
BETH - Well, there was a guy that was talking about it called Junaid who says he takes 200 photos a day and uploads a lot to, I guess Instagram and Facebook or whatever, and he basically says if he hasn't got sufficient likes within six minutes or 10 minutes he will take the photo down.
KATE - That's like Simon with his tweets.
BETH - I know, I was just thinking this.
SIMON - If I don't get a like.
BETH - Yes, if you don't get likes. You took it down today didn't you?
SIMON - Yes, I did a risqué joke, so I thought I'd just see, and after 10 minutes there was nothing…
BETH - What was the joke?
SIMON - Er… I can't remember, was it something…?
BETH - It's so good you can't remember.
SIMON - No, I think I was just talking about the snow and saying there's a lot of snowflakes about today, which I've already done another snowflake joke, so this is not really going anywhere.
BETH- Yes, so you took that off. So you could kind of be…
KATE - I'd say we're not veering quite into joke territory there are we Simon?
SIMON- That could be why I didn't get any likes.
BETH - But for some people, this guy, so he obviously likes the likes, it makes him feel really good and popular, but he said as a result he was noting all the sort of imperfections, if you like, of his face, and he's had so much surgery and he says he basically doesn't really look like he did before, he's changed as a person. All his family are saying, "Do you have to take a picture when we go for dinner, like every single time?" I mean 200 pictures a day, that's loads.
SIMON - Yeah, that's a lot.
KATE - And we know Simon is all over this Selfitis thing for definite, but Sheila, do you recognise yourself in it?
SHEILA - No, I hate taking selfies, I'm definitely on the other end of it. Maybe I've got selfie phobia. Maybe I'm the other end of the spectrum.
KATE - Do you know any of these people though that you could diagnose now?
SHEILA - Maybe it's a generational thing because I'm 53 and probably if I had lots of friends in their 20s then it would be more likely, people who've grown up with that kind of thing and for whom having a big presence on social media is part of the way they connect with their friends. I think when you're in your 50s it's more old fashioned, you know, invite someone round for a cup of tea thing.
KATE - Julia?
JULIA - No, I'm like Sheila, I hate selfies. Although I do do a special line in really bad selfies, so if I'm somewhere really spectacular or doing something really strange I'll take a selfie that's so bad it will just have like one eye or my forehead and post that. But I do have friends who, I've got one friend that I travel with who's an ex colleague and I travel with her a lot - we went to Antarctica together - she spent a whole hour with her back to the beautiful snowy landscape just taking selfies.
KATE - Did she not just ask you to take the picture?
JULIA - No.
KATE - Because normally you take a selfie if like there's no one in the vicinity to take a picture.
JULIA - There's no one else there. That's a really good point. No, I guess it's the control. I don't know, or the angle.
KATE - Yeah, if you're going to do a selfie you have to do it yourself, there's no point.
JULIA - Well, yeah.
SIMON - For people with dwarfism, because one of the conditions, you have very short arms, so when you get a selfie it's just a big face in the photo, because yeah absolutely adjustment is a selfie stick, but they're more tricky.
JULIA - But it is a sliding scale, so you might know a few people on a scale, so if you're borderline you'll take at least three photos of yourself a day but you don't post them, so just for your own photo album.
KATE - That's my wife at least, yeah.
SIMON - Does she really?
KATE - She takes a lot, yeah. She loves all the social medias, well mainly Instagram, so she's often taking selfies.
JULIA - In the hope that she gets a good one?
KATE - And she puts a lot of them up, yeah. She's borderline.
JULIA - Well, acute is where you take at least three photos a day and you post one.
KATE - She might even be acute.
JULIA - And then chronic...
KATE- I'll have to look into this.
JULIA - Chronic goes off the scale, it's where you have an uncontrollable urge to take photos and you basically post as many as you want.
KATE - Wow.
JULIA - We all know people on social media who do that, and we veer away from them.
KATE - We do. [whispers] Simon, Simon.
JULIA - But I have to say, there's a guy called Dr Mark Salter from the Royal College of Physicists, he says, "Selfitis is not a thing. Stop trying to label something that cannot be labelled. There's so many things involved in this, there's no point."
SIMON - My bit would be it's already got labelled in another way which is, I don't know, self-obsession or whatever. You need something else, this is just a way of exhibiting whatever condition you have.
LAURA - Narcissist.
SIMON - Whether it's constantly looking in the mirror or something like that.
KATE - There'll be another word for that.
SIMON - Like you do, Kate. You're always looking in the mirror aren't you?
KATE - I can't pass one without checking myself out. Looking good today!
BETH - I mean obviously I might post a few selfies in South Korea and in Seoul when I'm travelling by myself, but that's when you can take a selfie, if there's no one to take a shot.
SIMON - When you're on…
BETH - When I'm solo in Seoul.
SIMON -Thank you very much.
KATE - When you're ever so [sings] lo, lo, lo, lo, lo, lo lonely. Thank you, Beth. That brings us swiftly onto Sheila.
SIMON - Sorry Sheila.
SHEILA - That is the smoothest link I have ever, every heard.
SIMON - That's why we get paid the big bucks. [laughs]
KATE - Now Sheila, remind us of what happened to you. So you obviously were a singer but now you have trouble with your voice, so you're concentrating on other stuff. Tell us what you're up to.
SHEILA - Yeah, I have, as I explained in the little intro we did, so I have pain from the bad intubation and the scarring on my vocal chords and then I got this neurological condition, BMS, which is, it feels like…
KATE - BMS?
SHEILA - Burning mouth syndrome. So it feels like, you know when you grab a hot cup of tea and take a huge mouthful of scalding tea, how you feel just after that, that's what it feels like.
KATE - All the time?
SHEILA - Well, for me, unfortunately it's triggered by talking, and I think it's something about producing those percussive sounds, it sensitises an already over irritated nerve sensation in my mouth.
KATE - So is it happening now?
SHEILA - Yes, it is happening now. So the more I talk the worse it will get and the longer it will last. It does just go on and on, and if I talked all day, I mean nothing would happen to the sound of my voice, I mean I'd probably cough a lot and feel a bit sore, but I could ostensibly talk all day, but then I probably wouldn't be able to sleep for the pain. So that's the reason I do have to limit it. Now I've completely forgotten your question. I'm sorry, what was it?
SIMON - It's what you're up to now.
SHEILA - Oh, what I'm up to now. So I had to essentially find a new voice, which for a singer is quite traumatic because your profession becomes your identity, but even more so when you're a singer because it's what everybody wants you for. And I discovered that I love writing, so I became an author, I published 'Banish Clutter Forever' in 2010 which is a system for never having to tidy up again, pretty much, and that became a bestseller, and then my next book, which was out in May last year, was called 'Organising for Creative People'. So it was taking some of the physical organising but also going into all the sort of what I call head space organising or contract social media, all the infrastructure you need as a creative person.
SIMON - So I produce comedy and I have to manage these comedians because they're very messy. I mean, am I stereotyping?
SHEILA - Is it like herding cats?
SIMON - It's tricky. Is that what a lot of creative people are like? Is that the stereotype? Is that true?
SHEILA - Well I think the trouble is we've all been hit with this myth of the sort of dysfunctional genius as far as creativity is concerned and the myths around Van Gogh and Michelangelo, and they definitely were chaotic, mentally troubled, creative people. And some of them were geniuses, but I don't think that the disorganisation and the trouble was necessarily related to the creativity, I think they both happen to sort of exist in one person.
SIMON - So I saw a blog of Lisa Hammond who is a short person, she's an actor, she plays Donna in EastEnders.
SIMON - And she says to be an actor you need to be very talented, driven, but you also need to be almost like a business person and very organised.
SHEILA - Of course.
SIMON - And is that your influence? Is that where she's got that from do you think?
SHEILA - I think Lisa's amazing, I mean she probably had it way before she met me, but I have been working with her recently because what came out of 'Organising for Creative People' was I was doing the odd master class, very limited in talk time, but people would come and workshop their creative issues with me, and I realised there was this huge need for a creative-focused life coaching. So I am a life coach specifically for people in the creative arts. I started on 'Grange Hill' as an actress, as Lisa Hammond did.
SIMON - She did, yes.
SHEILA - Yes. She played Denny in different eras, but we're both ex 'Grange Hill', and then I've been in the music business for 35 years and also have had a career as an author. So I can mentor from the point of view of…
SIMON - You understand it.
SHEILA - I understand it from the point of view...
KATE - But if you can't talk, how do you mentor people and life coach and can you only do it one day out of four or…?
SHEILA - I life coach and mentor by Skype video, so even if you're on tour you can still connect with me and work with me. And I type into the instant message box and the other person talks. We spend time absolutely focused on what the coachee needs, what the client needs.
KATE - And Simon talked about you working with Lisa Hammond. Do you specialise in people with disabilities?
SHEILA - I don't specialise in people with disabilities, but of course when I was working with Lisa and her fantastic comedy partner, Rachel Spence, because they've just done some comedy pilots for Channel 4…
SIMON - You can see these online, can't you?
SHEILA - Yeah, you can see them online and they're fantastic. I do understand though what it's like. Some of the sort of procrastination and motivation issues are different if you're dealing with chronic pain, and of course that's something I understand very well.
KATE - How is that?
SIMON - Well, is it because you could use it as an excuse? I'm being a bit naughty now. Or is it because it's a very real excuse, you can't…
SHEILA - I think it is a very real excuse. I mean I find, although I don't have a pain issue that physically limits me in terms of walking across the street, I find that when I'm in a huge amount of pain I'm actually physically very cautious and quite temperamentally cautious, and that is not the day to write that cold-calling email.
SIMON - And also it affects your brain. When I have acute pain I'm angry, I'm aggressive, and it's picking that moment.
SHEILA - Yes, it affects you emotionally, but also I think it takes processing time because your brain is dealing with that. I mean it's like if there was an alarm going off now while we were talking we would find it very difficult to concentrate, and so some of your concentration time is taken up. So it is about balancing your capabilities and focussing in a very conscious way on what you're able to do when and making the most of that time, in a way that parents do for instance. You know, you have to grab that extra half hour you've managed to squeeze away from caring for your child and I think it's pretty much the same thing.
KATE - So how does not being able to speak affect your levels of confidence when you're out and about, or when you're not speaking do you just literally retreat inside and not see anybody?
SHEILA - Well I think the big temptation is because I can actually make the noise, as I say, I get into a lovely conversation, like this one, and I don't want to stop and then I overdo it and I come away and I'm annoyed with myself or I'm in huge amounts of pain and I just can't concentrate on anything, it kind of knocks the next couple of days out. If I've really overdone it, I mean most of the time I'm good and I manage it. I think it does affect other people's perceptions of you particularly badly because it sounds like such a silly little problem.
SIMON - Oh, I think it's huge. I think communication.
SHEILA - But there are some people with, shall we say, not huge imaginations who imagine that because it's just about talking, it's not literally about needing a ramp to get into a building that it's not as huge a problem. And I have…
KATE - Because it's the hidden disability thing as well that nothing really changes with you, you just have to not talk.
SHEILA - Yes. I have to not talk, and because I talk sometimes people can forget that I'm getting worn out, or people can get annoyed with me because I've decided that right now I can't talk. I think there is this sort of psychological effect of when you aren't talking to someone, even when they know exactly why you're not talking to them the back of their brain goes, "You're not talking to me, we're not talking."
SIMON - Okay, so earlier on in the show there were a couple of times I looked at you and I thought you were going to come in and you didn't, and you looked at me and it took three times before I thought, she's managing herself, that's what she's doing here.
SHEILA - Yes, absolutely. There are times, particularly with chipping in in conversation, sometimes I think, well is it really worth it to say that or would it be better to wait until…?
SIMON - Does it have secondary impacts on things like, I don't know, sense of taste or smell?
SHEILA - Yes, my sense of taste is vastly reduced. Smell fortunately is not affected. On bad pain days, I mean like for instance now I certainly couldn't go out and eat battered fish, the crispiness would absolutely rip up my mouth. So it becomes very over-sensitive. So I couldn't eat crusty bread for instance. I do have to… But the worst thing actually is if I haven't spoken at all to someone and they only ever meet me when I'm writing hand notes or typing via my iPad or what have you, they can't judge my level of intelligence or my class.
There's something unsettling about not being able to hear the timbre of people's voices, because the timbre doesn't lie, it's connected to your blood supply, and all the emotions in your system which are generated by hormones, like adrenaline or oxytocin, show up in your voice, which is why we find singers so compelling. So it's very unsettling for them not to be able to hear my voice, and some people do assume that I'm mentally disabled.
SIMON - Lost Voice Guy is a chap called Lee Ridley, he's a stand-up comedian, he doesn't speak at all.
SHEILA - Wow.
KATE - He's been on the show a few times.
SIMON - Yeah, and he uses an iPad and the voice, and he's from Newcastle, and one of his jokes, but there's a truth in it, which is, "I want a Geordie accent, I don't want this computerised voice," because it's completely detached from who he is.
SHEILA - But there is a voice bank now. There are people who are donating their voices, which is fantastic. Because obviously if you're a six year old girl you don't want a Stephen Hawking type voice, it's completely incongruous.
SIMON - So it's kind of ruined his joke but it might improve his life. [laughter]
SHEILA - Absolutely.
KATE - I don't know which he'd prefer actually to be honest.
SIMON - Keep the gag.
KATE - Keep the gag, yeah.
SHEILA - I can't type fast enough for jokes, that's another one for me. If I'm standing in a group of people at a party and I'm scribbling notes some people will completely ignore the notes, some people forget to read them out, but also, I can't write fast enough to say that little quip and then I'm way behind and I seem much, much duller than hopefully I am.
SIMON - It's the other side of deafness, and people who have deafness say communication in a large group is very difficult and I think this is the other side of the same coin. And that impact on a social situation's quite big.
SHEILA - Yes, it is, it is. I think that's the hardest thing. People used to say to me, "Oh, I bet you'd give anything to have your singing voice back." Actually I'd give anything to have my pain-free speaking voice, because I could get on with other things quite happily, but spending a limited amount of time with friends, and of course I will never be able to live with someone. I can never have a life partner that I live with because I'd kill them after a week, [laughs] the pain levels, I'd probably strangle them in their sleep. I mean they would be effectively looking to me to speak all the time, unless we signed.
KATE - Why is that?
SHEILA - Because the pain levels would just grow and grow and grow.
KATE - Is that just because you don't think somebody would put up with not speaking to you?
SHEILA - I think unless they signed, and again, signing I looked into and I did a level one BSL course, but mouthing is part of the grammar with BSL and mouthing causes me the same amount of pain. So it would have to be someone who not only learned BSL but learned to interpret my modified version of BSL. And that's quite a big ask.
SIMON - Do you see technology in the future potentially could help with this? Is there anything on the horizon that you think, "oh"?
SHEILA - Yes. I have heard about signing gloves that you put on that talk. So if they simultaneously voice-generated what I was saying as I was signing that would be a huge, huge breakthrough for me, but I believe they're being developed in America, so that would be ASL, not BSL and I suppose they'd take a while to trickle down here.
SIMON - Because American Sign Language is slightly different.
SHEILA - Slightly different, yeah.
SIMON - Yeah. So at the risk of having to go to see John of God, is there ointment or… Forgive me, it's a terrible question, because everyone asks it, but is there any sort of relief or respite? Is there anything you can do or take?
SHEILA - Well, with the scarring on my vocal chords, no. There is a very scary sounding treatment where they inject a gel into your vocal chords, but I'm really not sure that I'd be willing to take the risk of what would happen. So currently there is, even if you go to a very specialist singer's ENT, there is no real treatment for scarring of the vocal chords. With the BMS, it's very common around menopause. Mine developed around menopause.
SIMON - That's the burning mouth syndrome, yes.
SHEILA - That's the burning mouth syndrome. And no, they don't fully understand what causes it. So there is no official cure. I have tried the sort of obvious things.
SIMON - Is there a group or a club or a social…?
SHEILA - I belong to a Facebook group who are fantastic, and people do post the latest possibilities. It can be affected by things like B vitamins or low iron levels but I've tried all that and it's not that. I think with me it's more hormonal.
KATE - It's interesting. Just sitting here I can see it affecting you more and more and more and I feel like we need to stop talking to you now because…
SHEILA - No, I'll be fine if I have a drink of water. I mean when it's really bad I go very, very pale with the pain but I'm nowhere near the pale stage at the moment.
SIMON - So now can we exploit the remainder of your voice to talk about 'Grange Hill'?
SHEILA - Certainly, yes. What do you want to know?
SIMON - Well I want to start singing the theme tune but we've already done enough of that.
KATE - [sings] Da-da-da-du…
SHEILA - It's quite a difficult one, yeah.
SIMON - There were different eras weren't there and normally known through a couple of key characters. So which era or which year were you?
SHEILA - I'm the Trisha and Tucker era.
SIMON - Oh, so you're one of the originals!
SHEILA - Right at the beginning, yeah.
SIMON - And Cathy was Trisha's best friend.
SHEILA - U-huh.
SIMON - Oh, I fancied her a bit and now I'm feeling embarrassed now I've said that. Do you know her, or did?
SHEILA - Well I did all my scenes with Trisha and Cathy, yeah. I was part of the Trisha, Cathy group.
KATE - Are you still in touch? I think Simon's asking for her number.
SIMON - [laughs] I'm not.
SHEILA - Unfortunately I'm not still in touch with her.
SIMON - You've lost touch, yeah. Oh, that's interesting.
SHEILA - Now she had a lovely singing voice.
SIMON - Did she?
SHEILA - She used to sing to us on set. I mean that was the thing with 'Grange Hill', in that era certainly, it really should have been a musical because the second the cameras were off people were singing. And I was going off to the big rehearsal room staircases and singing and they'd always have to call me in to do my bit.
SIMON - So we would have to go to my friend's house because certain households weren't allowed to watch 'Grange Hill' because it was too risqué and this is like four or five o'clock in the afternoon as a kid's programme.
SHEILA - This is official BBC children's programming. But what you have to remember is that prior to that in the '70s what we had was this throw-over from Enid Blyton and Billy Bunter and it was all decent sorts or children of a certain class who 'talked like that' for whom everything was jolly and whizzo and 'Grange Hill' was written by Phil Redmond who wrote 'Brookside' and he was really exploring those difficult issues that children face. And not putting any sort of gloss on it. And parents couldn't handle it, I mean the kids loved it, but parents really couldn't handle it.
SIMON - Well I mean it's still a TV programme but it was quite real and quite shocking in that sense. I don't know if you remember, there was a specific bit around Madeleine Tanner and shoplifting which caused a big furore.
SHEILA - Yes, I remember that.
SIMON - I mean what was it like living through that?
SHEILA - I just was like most kids were absolutely delighted that we weren't in this awful, everything's fine, Billy Bunter land, you know, where kids never were poor or dyslexic. I remember a big dyslexic storyline when I was in it. Kids never got pregnant or offered drugs or suffered from STIs or watched too much porn, which is what 'Grange Hill' would be talking about if it was still on air today. These are things where I think parents have this where they want to preserve innocence for as long as possible and they forget how fast kids grow up and kids need information, and in a way 'Grange Hill' got everyone talking.
KATE - I'm not going to let my daughter watch it, anything like that. She's going to stick with the 'Teletubbies' until she's 30.
SIMON - Yeah, but then she'll go round to her friends who are allowed to watch it…
KATE - No. She won't have friends. No, no. Well…
SIMON - I think we should do a special on this.
KATE - A 'Grange Hill' special.
SIMON - Yeah.
KATE - Okay.
SIMON - Just you and me talking for an hour.
SHEILA - Yeah, you me and Lisa. Let's bring Lisa in. That would be great.
KATE - Thank you very much Sheila, thank you for expending your voice energy with us today, we really do appreciate it.
SHEILA - You're very, very welcome.
KATE - And thanks also to Beth Rose and Julia Buckley, and Mya Choudry from the Ehlers-Danlos Support UK. Simon and I will be back at the beginning of April with another talk show for you lovely people. That will be just after Easter. In the meantime, stay tuned for the other podcasts from Ouch that inhabit this feed when we're not here, like the takeover. Oh, and big news for Robyn, Jamie and Lion fans, they will be back in the summer with a new eight-part series and you'll have more on that soon.
SIMON - That's very cool. Like us, share us, please review us at the place where you get the podcast from, whether it's Apple podcasts or the other services. We ask you to do this because it helps people like you to find us.
KATE - And not because you've got some kind of confidence issue where you need the likes Simon, is that right?
SIMON - Not at all. I feel I'm being victimised here. I wish I hadn't mentioned the tweet now.
KATE - If you want to get in touch email email@example.com, tweet @bbcouch or find us on Facebook.
SIMON - Until next time, no music this month.
KATE - Oh gosh.
SIMON - We are gone.
KATE - Bye-bye.