Disability

Full transcript of The secret life of a teenager with MS

This is a full transcript of The secret life of a teenager with MS as first broadcast on 11 October 2019, presented by Niamh Hughes and Emma Tracey with guests Bella Parkhouse and her mum Sam.

JINGLE This is the BBC.

NIAMHWhat were you doing when you were 17? Probably thinking about homework deadlines, exams, coursework, whether or not you're invited to Laura's brother's 18th birthday party on Saturday night. Yeah, me too. And yes, I was invited. Well, Bella Parkhouse is more or less the same, but her priorities must put her health first because she is among 10% of people living with multiple sclerosis, or MS, under the age of 18. So, juvenile MS, as it's called, is a neurological condition which damages the nerves in your body and makes it really hard to do everyday things like walk, talk, even think. But despite experiencing symptoms such as dizziness and chronic fatigue Bella won't miss out on all the fun.

So, where did it all begin?

BELLAI remember at the end of 2015…

SARAH'16.

BELLAThat's the one. [Laughter]

NIAMH2016, thank you, Sarah.

BELLAGot a bad memory from it. But I was sitting there in class and I was like oh god, I really need to get my eyes tested again, I can't see the board; because I'm short-sighted anyway. And then when I did eventually go they said, oh we're going to refer you to hospital. Because I thought they were mucking me about saying I couldn't…because I couldn't see anything they'd put up for me. But it turns out it's just bad eyes. And then I had an MRI scan and the man in the hospital said to me, oh you could have MS but we don't know, we don't want to say for sure, so just go home and google it and see how you feel.

NIAMHReally, that was…?

BELLAThat was the advice he gave me.

SARAHThat was the eye doctor, told us to go home and google MS.

BELLAYeah.

NIAMHGosh. And how did that make you feel?

SARAHI was just petrified.

BELLAYeah.

SARAHThinking what! It was horrendous.

NIAMHYeah, I can imagine.

BELLADon't start looking up on the internet what you've got wrong because you'll end up looking at these things and you've got all sorts wrong with you, but you haven't.

EMMAWhen you did google it did you find that you actually did have some more of the symptoms, apart from the eye issue?

BELLANot that I can remember. When I went through symptoms with the consultant, like possible things, she was like, have you ever had this, have you ever had that. And I was like, ten years ago I've had that, and eight years ago I had that, and once I had that when I was a kid. And it makes you think I've probably had it a lot longer. But who knows? I might not have. And growing up when you had these things, like I remember once my sides were really painful to touch, like clothes and anything, it was so painful and I was just like god, isn't it weird being a human.

EMMASo, actually you were having symptoms for years and years probably?

BELLAAnd I just thought humans are weird and we all had it; but apparently not.

EMMAHumans are weird.

NIAMHYeah, by default we're all a little bit weird. [Laughter]

BELLABecause people's symptoms, a lot of it was spasms mainly. Like when people put comments on the websites and everything they're like yeah, I get loads of spasms, loads of pains. And I was like no, I've just got bad eyes, so maybe it's something else.

NIAMHBut how did it develop from there?

BELLAThen I remember, I think it was just before I got diagnosed, like a few weeks there was a good few days, like three or four days, where I was just so dizzy I could not move. Turning over I was spinning in three different directions. I thought I was going to be sick. It was horrible.

EMMAAnd then you went in to get your final diagnosis, and how did they tell you? What happened?

BELLAMy mum picked me up from school with one of her best friends. We went there, sat in the hospital for ages, it was so boring, and then they finally called us in. And it was all serious and he was like, I'm really sorry, Bella, but you do have it. And I've got a nervous giggle so I was just trying to hold it in. But my mum was really upset and yeah, I just remember sitting there trying not to laugh. Because what you do? It's like oh, it's got a name now; nothing's changed really.

NIAMHSarah, what was your reaction? So, you were upset, but what did you know about MS prior to that?

SARAHI knew nothing about it at all, nothing. Only what I'd looked on the internet briefly, and I didn't really go too much into it because I thought if it isn't then I just don't want to know. So, I really didn't know anything about it.

NIAMHAnd so your initial reaction was?

SARAHComplete shock. Devastated for Bella. It was hard, very hard.

NIAMHAnd what was it like in the immediate aftermath, like in say the first couple of weeks after?

SARAHWe felt very alone. We had no help from the hospital at all. They gave us a booklet and said we'll have to put you on these drugs to try and stop the MS. They gave us a booklet of about 15 drugs, told us to go home and do the research on each drug, and then let them know which one we have chosen.

NIAMHSo, you were given the power to choose what medication you were going to have?

SARAHYeah.

BELLAWe did ask for help but they were like no, we can't help you.

SARAHAnd because she wasn't 18 the drugs weren't licensed for under-18s, so I was signing disclaimers saying I take full responsibility if anything happens to her while she's on these drugs.

NIAMHBecause what you have is juvenile MS so you're in a 10% region of young people who have been diagnosed with this as teenagers. So, there were no provisions, no kind of resources left for you?

BELLANot at that hospital, no.

SARAHNothing.

BELLABut the one we picked it was then that luckily before he took any further action he transferred us over to Great Ormond Street, and then they did more tests and they said if you'd had that drug you would have got JC virus.

SARAHNo, you're JC virus positive.

BELLAI've got JC virus positive.

SARAHAnd some of the disease modifying drugs you take with MS they lower your immune system. So, any of us can have JC virus, you could have it, I could have it, but because our immune system is fine we wouldn't know anything about it; it doesn't do us any harm at all. But because Bella's immune system is lowered because of the drugs it causes a deadly brain infection.

NIAMHWow.

SARAHAnd there are certain drugs that she can't take because of it.

EMMAThat's an incredible responsibility.

SARAHYeah.

EMMAUnbelievable.

SARAHBut the previous hospital hadn't even checked for JC virus, and we'd chosen the drug she was going on to. They hadn't done a lumber puncture, hadn't checked for JC virus, anything. But we'd picked this drug and she was about to go on it. It was only the MS nurse phoned me up at work one day and said, would you like to be transferred to Great Ormond Street. And I didn't know I could do that; I thought you had to go to your local hospital. And they've been amazing, Great Ormond Street, haven't they?

BELLAOh, they've been so good.

EMMASo, tell us about that. How different was the care? What happened when you got transferred? What did they do, did they help you choose a drug? Tell me about that.

BELLAThey did more tests just to double check I did have MS.

SARAHThey did a lumber puncture because the lumber puncture is the actual one to diagnose MS, isn't it?

BELLAAnd they did the JC virus test. They did another MRI.

EMMASo, they did the test to re-diagnose you. And then what next?

BELLAWe talked about treatment, what possibilities there are, what I could have, what I can't have. And then they helped us decide so much more than the other place did.

SARAHAnd the drug Bella's on has just come off trial early because it's been so good.

BELLAYeah. And I can't fault it. Since I've been on it I've not had a single relapse. But before I was in the consultant thinks I had about six relapses.

NIAMHAnd what does a relapse look like for you?

BELLAThe disease spell for those few days that would be classed as a relapse.

NIAMHOkay.

BELLAThere was a time my legs were quite weak and I managed to get out of PE, which was quite good, because I couldn't run. I'd start running and then my legs would collapse. And I don't want to do the 800m for sports day either. But because at school we had to do trials to get into sports day, which is stupid because they pick the best people, anyway the teacher was like, right you girls do 800m and these people will time you. And just as we got close to the end that's it, my legs just gave up. And because I was running with my friends they all stopped and came and helped me. The teacher got so angry. She was like to one of my friends, Gemma, why did you stop, you're such a strong runner, you could have done really well and beat everyone but you stopped. And I was just like, I didn't know what to say, I was like, she stopped to help me because I'm a mess on the floor; I think that means more than a sports day race to be honest.

NIAMHSo, Gemma's a good egg, we've established that.

BELLAShe was. [Laughter] But I just couldn't believe her. I was like, you have literally no understanding whatsoever. But who does when you're that age with MS?

NIAMHI just wanted to know what you're like in school, what kind of person you were like in school?

BELLAI've always been quiet and just got on with it. Because my mum works in a school and she comes home and is like, god I've had such a bad day. So, I have immediate sympathy for anyone who is a teacher. So, I got on with them, and then when I got diagnosed I had immediate sympathy. So, before when I was like, I can't see the board, they were like well copy off somebody then. As soon as it has a name to it sympathy from everyone.

EMMAI like the way you were saying it was sympathy and then your mum jumped in and said they were so supportive. But it made me want to know how did you feel about that reaction? Did you feel oh god, did you feel embarrassed? Did you feel just a bit cringey? Or were just so pleased that you got on with the teachers and made the most of it?

BELLAI suppose I was happy that they were helping me.

SARAHBut you're not the kind of person who likes a fuss either, are you?

BELLANo. I had one teacher who would always print out every PowerPoint, and people around me were like, why have you got that. I think everyone was quite worried and scared. But I always took it as a joke because nothing changed once it got a name, so I was like a part of it got annoyed that as soon as it had a name everyone suddenly cared more.

EMMAAnd when you're meeting new people or you're just going about your business would you say to someone new, oh I've got bad memory because, or I'm really tired because? Or do you just only tell when you need to tell?

BELLAWhen I started college if I had a pain or something, and when I have pains I put pressure on it to help it go - I don't know if that helps but it helps me - or if I get a bit shaky or something people are like, what's happening. So, I had to briefly explain and I was like, just give me a second and wait till it goes, tell them. And then they were quite nice and understanding because they don't know, but also when you're in college everyone is more grown up so nicer, and they were just like oh well. Loads of people have something wrong with them but you don't know.

And then when I me this boy once, he's my ex, I didn't know if I liked him and I didn't want a boyfriend at the time, so I tried to put him off by saying I have it, and it didn't work.

NIAMHWow.

BELLAAnd then with my boyfriend now on our first date, because we work together I didn't know if he knew, because I told a lot of people at work, and then I mentioned it to him and he was like, that's fine, my best mate has it.

EMMAHave you ever met anybody your age with MS?

BELLAYeah, the hospital did a meetup for it. And we all got there, it was a bit awkward, and because we're all the same age we sort of looked at each other, and then the questions came out, have you got MS or brother or sister, and we were like yeah, we've all got it. And we were like, why is no one in a wheelchair. Even though we all had it we expected worse from other people.

EMMASo, how are you now? Tell me day to day what symptoms do you have and how does it affect you?

BELLAI'm usually all right now, to be honest. I mean, I get a few pains. I have really bad memory; I literally cannot remember anything.

NIAMHDo you call that brain fog? Because I know some people do.

BELLAI know some people do. I forgot that's what it was called. [Laughter] I'm just like oh, it's bad memory, tough.

EMMAAnd what about fatigue, what about tiredness?

BELLAYeah, that is a big one.

SARAHYou get awful tiredness, don't you?

BELLAThey do say if I am sleeping well and eating well I do notice a difference. But eating whatever I want doesn't really help.

NIAMHBut just say you had a big event coming up, like somebody's birthday, and you knew it was on this particular day, like a Friday night, how would you plan your week?

BELLAA few weeks ago I was going to someone's leaving drinks on a Saturday night and I was like, oh I'll go to Kingston shopping in the day, get some bits; that was the wrong thing to do. I was only there for two hours and I was so tired for the rest of the day. So, if I'm doing something big I will not do anything that day if it's in the evening, and I'll try not to do much the day before.

EMMADo you and your mum have different ideas on how you should pace yourself?

SARAHI try and advise her. I say, if you're feeling tired don't go out. But Bella doesn't like anything to stop her.

BELLANo.

SARAHShe doesn't let MS stop her doing anything.

BELLASometimes I'll give in to you, but a lot of the time I'll just grab a coffee or something and hope for the best. But caffeine does not help me at all, and when it does it gives me leg spasms, which is just annoying.

NIAMHDo you get FOMO, because I definitely do? And I ignore my fatigue or my tiredness and I just go, no, no, I'm going to go, I'm going to go. [Laughter]

BELLAAnd I don't care.

NIAMHI will regret it tomorrow. I definitely have that kind of mindset; are you the same a little bit?

BELLAYeah. I'm like, do you know what I'm going to do it, tough.

EMMAAnd are you working, are you at college, are you taking a break? What are you doing at the moment?

BELLAI'm in college but I've also got a part-time job. And I was a receptionist at the swimming pool for me and then they offered to pay for me to become a swimming teacher, which is expensive so I took it. And that helps me because when I'm in the water it's like I haven't got MS again. I don't get any pains, I don't really get tired. And because I'm on reception a lot of the time you hear people coming in like, oh I have this wrong with me, I have that wrong with me, and I'm like it actually fixes a lot of things just getting in a swimming pool. And it's nice because there's no weight on you or anything.

EMMAAnd what are you doing at college?

BELLAPsychology, business and English. I'm really good at business apparently. I've never done business before but I'm getting distinctions in it. And my step-dad's niece did a degree apprenticeship and I looked into doing those and you can do business ones, and I thought that would be better. Because I like working; I don't like sitting there learning as much because I realise I'm not as focused because my mind wanders, I get more pains.

EMMASo, you say you get distinctions in your business but that you have really bad memory problems and brain fog. Do you have little strategies and little things to help you study your business so that you do really well in it?

BELLABusiness was all coursework luckily so I could do bits every now and again. And because I was doing it regularly that helped.

EMMASo, that's good. So you found a way of working that actually fits with your MS so that you can do things over time and that kind of thing. I think it's amazing that you do a part-time job and you're studying and you're learning to be a swimming teacher. How do you balance all that?

BELLAI don't actually know. Because college isn't all day every day, it's just you go in for your lessons, so I can work around that and then I can do my homework at work, which helps. They're like, as long as you don't ignore customers. Sunday is my day off from everything, no college, no work, so that's when I do my own stuff. And then Tuesday night is a day where I have college but I don't have work. So, they're my two days off sort of thing.

EMMABusy girl.

NIAMHBut looking to the future do you think you'll be able to manage your time in a similar way that really fits your life and suits you?

BELLAI would hope so. To the hour, if I can, I want to know what I'm doing then.

NIAMHIs that part of your character more though?

SARAHYeah.

BELLAI suppose yeah, I've always been quite like it, but now because I'm aware of fatigue I'm like okay, I need to do this then and that then. If I have to walk to college that takes an hour and it's horrible, I'm so tired for the rest of the day, and then I'll say oh I'm not doing anything that day then if I have to walk because it's horrible.

EMMASo, you are really doing a lot of managing behind the scenes. You make it sound really simple and straightforward but you are thinking it through all the time, saying if I walk to college then I won't be doing anything that evening because I'll be too tired.

BELLAYeah. The annoying thing is my boyfriend will make plans and then he'll change them last minute, and it won't fit in in my head and it kills me. Oh, it drives me mad.

EMMAYeah, they all do that.

NIAMHYou downplay it so much, but I can imagine it's like an Excel spreadsheet in your mind.

BELLAYeah.

NIAMHBut how do you try and explain MS to people?

SARAHI just explain to them what it is, what it means, the pain of it. Because no one can see what Bella's going through; they can't see the pain she goes through and the tiredness. People don't know about it. People say, oh that's okay, she'll get better.

EMMADo you worry really badly about her future? She seems to have it really together, but you're her mum.

SARAHI try not to think too much about it. Bella's a very level-headed girl. She's amazing at everything, the way she copes. And none of us know what's round the corner, so that's the way I kind of look at it. But yeah, I try not to think too much about the future. But obviously there's new research every month for new drugs.

BELLASo, Bella, you're 17; who makes the decisions now, is it you or mum?

SARAHYou do, don't you?

BELLAI do. It's really weird because a lot of friends at college they still have to ask their mum if they can go out and stuff, and I'm like, you ask your parents to do things still. Because I've grown up so much quicker than everyone.

SARAHBella organises her own hospital appointments now, don't you?

BELLAYeah.

SARAHYou go by yourself. Unless it's with the consultant then I come. But you manage drugs and everything by yourself, don't you?

BELLAYeah. I don't really remember the last time you did it for me really.

EMMAWhy is that? You could ask your mum to do stuff. Was there a moment where you were like, actually I need to take control of this? I know it goes from childhood services to adult services when you're 16, but it sounds like a decision you guys made together as well.

BELLAI don't really know. I guess it sort of just happened.

SARAHI think it's because you were at college and you were working I never knew when you were off to make appointments.

BELLAYes.

SARAHSo, I'd say to you, well can you phone them because you know when you're off work or college. And you were happy to do it yourself.

EMMABecause my next question for Sarah was going to be: is it really tempting to be overprotective. But actually it sounds like the MS has made you more independent.

SARAHYeah, I could be overprotective but I'm not because Bella's got, I'm always there for her and she knows that, but at the end of the day it's Bella's life and she's got to take control of it.

NIAMHBut do you find that quite empowering?

BELLAI quite like it because I'm getting older, and I'm not even that old, I'm 17, but if I had my parents, oh you're doing this the, you're doing that then, it would drive me mad. I'd hate that. I don't know why; I just like the independence I suppose.

NIAMHIf you were to organise an MS friendly night out what would the night out be and how would you plan it?

BELLAI wouldn't go out. Not at all. [Laughter] I'd stay in.

NIAMHOkay, I'm going to put you on the spot and say you have to go out on this date.

BELLAI have to go out?

NIAMHYou have to go out.

BELLAOh, I'm either all or nothing: I'll either stay in and be like I'll get an early night; or if I go out I'll be prepared for the next day, how I'm going to feel, so I'd go all out completely.

EMMASo, you wouldn't temper your night out; you just either do it or don't do it?

BELLAYeah. To be honest I more see what people are going to be around me. If they're not supportive, if something was to happen, I'm a bit more wary and might choose not to go out or go out for as long. If I go out on the night it will be with my boyfriend, because he's older anyway, so then I've got him because he's so supportive. And then either if I'm not with him I'll be with girls somewhere else in the same place I know that he's still there if I needed him. It takes a while to find out who your friends actually are.

EMMAWhy do you say that?

BELLAIt was I got diagnosed and then about a month or so later it was my best friend at the time her birthday, and she had a party and then she got drunk and was calling me disabled to other people.

NIAMHWhen something like that happens you start to feel like yeah, you have to keep a much smaller group of people around you and keep much finer company.

BELLAHm.

EMMADo you think your friends treat you any differently? Even in a positive way, so they change what their plan might be to help you feel included?

BELLAMy actual friends do yeah. If we plan something and I wake up and I'm like, actually I really can't, they respect that and will just change to make it easier for me. I don't like to do it, but if it has to be done it has to be done.

EMMASo, actually the reaction to your MS has a big bearing on whether you stick with a person or whether you…?

BELLAYeah, just because of in the past friends that have been nice at the start and then at the end they're just not nice. I'm quite impatient and I'd rather know now, just like are you going to be nice to me or not, because if not see you later.

NIAMHYou came off against a few bullies, didn't you? Are you happy to maybe talk a bit about that?

BELLAOh yeah sure, sure. It makes me laugh to be honest.

NIAMHReally? You've got a nice smattering of perspective now?

BELLAIt sucks to be them. Well, Reading festival I went with five people I think, and I'm really dizzy, I'm really falling all over the place, and one of the girls was supportive one of the days and she was like, we can go back early to the tent tonight if you want, it's cold, it's wet, we can go back. And I was like, she's a friend.

The others came back later than everyone one night drunk and phoned someone and was just talking about us. She complained about me because I wouldn't drink and I was boring. Okay, so clearly you guys don't want to be with me. They'd start conversations with each other and purposely leave me out. But luckily my boyfriend at the time his friends were there, and I was friends with a few of them anyway, met some more, they looked after me, and I can't say a bad word about them. Even when we went to go watch Post Malone and we bumped into some girls that they knew, two of them, and then there was a mosh pit, so I got separated and left with these two girls I'd literally met five minutes ago and I was stuck with them for a couple of hours and they were so nice.

EMMASo, actually people you thought were your friends or who had been your friends before picked on you basically because you had MS, because you couldn't drink like them, because you maybe were a bit slower than them?

BELLAYeah. And I was a bit annoyed about the drinking thing because I had been to one or two parties and not drank and everyone accepted that. They would play drinking games and then when it came round to me I'd be downing a bottle of water or something and they'd all be cheering for a joke. And I was just like a party pooper to them because I didn't want to join in.

NIAMHIf you could write a little handbook or guide on how to manage your MS maybe for somebody else what would be your five top tips?

BELLADon't let it stop you doing anything. Don't take it to heart. But if you can just laugh about it. Maybe even use it to your advantage one day somehow. Who knows? Have you got any?

SARAHYou just take each day as it comes, don't you?

BELLAYeah. Don't plan ahead to the minute because it won't happen like that at all. Plan but you need to listen to your body.

EMMAAnd Sarah, what about tips for parents?

SARAHJust talk about it. I find just talking to people about it, if I meet a new person I'll tell them, and the more I talk about it the more I can cope with it. Just try and carry on as normal, literally. You have hospital appointments and you might take drugs or have injections but just carry on as normal. We've done lots for the MS Society and we've raised over £2,000 haven't we for the MS Society?

BELLAYeah.

SARAHJust take each day as it comes and just try and turn the negative into positives, and just carry on as normal. Because you can't let it take over your life.

EMMAWhat did you do to raise the money?

SARAHWell, Bella and my friend Annie you did the Big Leap, didn't you, for the MS Society?

BELLAYeah, jumped out of a plane.

SARAHSo, we raised a lot of money with that.

EMMAIt's interesting to know why people raise money. Is it for the research? Is it because they've been kind to you?

SARAHFor the research, yeah, because it is so important to find new drugs to help. Hopefully it might help Bella in a few years or people in the future.

NIAMHThanks so much to Bella Parkhouse and her mum, Sarah Daiken for their time. We have received a response from Ashford and St Peter's Hospital where Bella was originally treated. It says: Ashford and St Peter's Hospital take all feedback and concerns very seriously. Our vision is to provide an outstanding level of care for all patients, and we are very sorry that Bella and her mother Sarah were dissatisfied with her care. To date we have not received any communications from the family about their concerns. If they would like to get in touch with our patient advice and liaison team and discuss it with us in more detail we would welcome the opportunity to do so.

Remember you can catch BBC Ouch on all the usual platforms. We are @bbcouch on Twitter. Just search for BBC Ouch on Facebook. And on Instagram we are bbc_ouch_disability. And to remember to say to your smart speaker, ask the BBC for Ouch. I'm Niamh Hughes and I'll speak to you soon.

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