Luke

Age at interview: 21

Age at diagnosis: 19

Brief Outline: Luke experienced depression in his mid-teens and later had strong delusions. He was given a diagnosis of bipolar disorder. He has been sectioned twice and now manages his psychosis with self-help and medication.

Background: Luke is single and works as a management consultant. He is White British.

More about me...

Luke first saw a counsellor when he was 12 years old. He was having a difficult time with his family at home and was “disruptive” in class. But soon after the counselling began his family relocated and Luke moved to a new school. By his mid-teens (age 15-16) he started to experience depression. During this time Luke found it difficult to sleep at night and get up in the morning. He also began having problems with anxiety and at the age of 17 he started having his first suicidal thoughts. He was assessed by a psychiatrist who said that Luke had “tendencies of schizophrenia” and “a bit of psychosis in the background” but did not give him a full diagnosis. Luke was frustrated by this because he felt that without a diagnosis he didn’t have a reason for feeling low. It was some years before he was given a diagnosis of bipolar disorder, which he says was a relief because he was then given more appropriate support.

When Luke left sixth form college he had managed to get the grades he needed for a good job he’d been offered in a multinational company. He felt like he’d “achieved something massive” by getting through sixth form with good grades and had “overcome something huge”. However, two weeks after beginning his new job in September 2014 Luke experienced symptoms of psychosis. At times he would feel like people were watching him, and at other times his mood would change and he would feel like he had great ideas and that he was going to change the world. He could go three to four days without sleep. Luke’s father, who experiences bipolar disorder himself, immediately recognised Luke’s symptoms and sought help. After several visits to A&E he was finally given an assessment by a team of psychiatrists and was admitted to hospital involuntarily under a section of the Mental Health Act.

Luke spent five or six weeks in hospital and received intense care and medication. Catching up on sleep was also important. During his first week on the ward Luke described himself as being a “nutter” and “a bit destructive”. He says that when you’re psychotic and in hospital under section you feel a “little bit scared”, “trapped”. Being in that situation you become “violent” and “a horrible human being”. By the second week in hospital, however, Luke found that he was adjusting to his treatment. He began “indulging” himself in occupational therapy and found the ward was “kind of like an idyllic recovery place” for him. During his stay on the ward he made a few close friends and continued visiting the ward and members of staff after he was released. Luke was sectioned for a second time in March 2015.

While Luke recognises how catastrophic psychosis can be he appreciates that psychosis allows him to see things in more abstract ways and gives him a “different level of perception”. His experience of bipolar has made him rethink his career path and has made him more altruistic. He mentors someone younger than himself, who is now like a friend, and he finds being a mentor is like “looking into the past”. He has worked on and off over the last few years, but was signed off from his last job due to “manic depression”. It has been difficult financially, but he blames this partly on his own impulsiveness and love of gambling. Luke did apply for a Personal Independence Payment (PIP), but was refused (as he was told was the usual outcome) and he chose not to appeal. 

Luke receives a lot of support from his family and friends, and they regularly visited him in hospital. Luke was in a long term relationship in his late teens and is unsure what it will be like to start a new relationship with someone now he has a diagnosis of bipolar. He isn’t sure how or when he would tell the person about his mental health experiences. 

Luke has regular contact with a community practice nurse, who is “brilliant” – he really “listens” to him, whereas his psychiatrist, is just looking for a diagnosis. 

Day to day, Luke sees psychosis as a small part of his bipolar. Ideally Luke’s “game plan” is to reduce the regularity of his psychotic episodes. He manages his psychosis partly with medicine and partly through self-help. He takes quetiapine (anti-psychotic) and lithium which have side-effects such as weight gain, thyroid problems, and fatigue. Luke finds that listening to music helps him control his emotions. He also finds it important not to drink too much alcohol because he has found drinking (and being hungover) puts him at risk of having a psychotic episode. He has started walking more as it gives him a sense of achievement on days he is feeling depressed and unable to do anything else. He is currently having one to one CBT sessions which he feels may help his psychosis and also help him find out more about himself. Luke says he has a lot of energy and thinks he has reached a point where he feels ready to do a degree at university.

Luke remembers “a hundred percent” of his first experience. He was two weeks into his first job in the city when he began to experience delusions.

I remember - remember a hundred percent of it. I mean, it started with a sort of, thinking people are watching me. You know, you get very wary. But then, then you start to think you've got the biggest idea in the world. Which is ridi- which – you can't be talked out of your idea. And you think you're going to - you think you're Steve Jobs. You think you're going to bring out the world's next best revolutionary thing.

So I had these issues with depression going on. But they weren't sort of latent, they were - they were disruptive. And like when I left school after A levels, when I went to [a big city] and worked for [a multinational company]. It was about in my second week at the firm. That I got psychotic, and I got sectioned. It wasn't a great start to work. I mean, I was in a high security mental health ward at 18. And it was a, it was a crazy experience, just to experience it. It was, you know - I started to think MI, MI6 were onto me. I started to think that I was god. I thought I could predict the result of the Scottish referendum. My brain was working a thousand miles an hour, and it was quite scary for my friends and family. Couple of friends had come to visit me, and her friend - we lived in a flat together. And you know, they started to - they were saying "Oh, what's up with Luke?" I started to go walking at midnight. I couldn't sleep, for days. It sort of culminated in my Dad ringing up the police and the ambulance. He said, "There's no way you can control this." And sort of next thing I know, I'm waking up in a ward. In a 136 room. Which is a glorified padded cell. It's a seclusion suite within a high security mental health ward. So you can imagine the state I was in, to be put there. Yeah, it was - it was quite scary. I mean, you get this - but also, you get a sense of power, you get this euphoria. You know? In terms of the scale of how high you feel, and how - you know. You feel omnipotent. Not just that you feel that you're god, you feel that you're powerful. And you see things that other people don't see. Yeah, and also it all happened so quick. And I've never really thought that can be an intervention into psychosis. I don't think there's a way of stopping it, I think if you - To me, it feels like you become possessed. And, once it happens it's going to happen, you're going to end up in a psychiatric ward. You're going to be brought down by medication. You're going to get released. You're naturally going to come into a depression, from being so high. And then everything sort of gets back to normal. It’s, to me it seems it's completely uncontrollable.

Luke’s father, who himself had experienced bipolar disorder, recognised immediately that Luke needed help.

The thing is, when I started this new job, obviously I was getting - I had a lot of energy into it, I was trying to create this new image for myself. I was trying to become a professional. And my best friend, he sort of - I suppose at first he didn't really notice it. Because he probably thought, you know, this is Luke going at it, he's trying to - he's trying to do his best. You know, I was - I had the energy to socialise a hell of a lot more. I was always the last one out, drinking the most. And it - yeah. And my best friend became quite aware that something was wrong, my two friends that were visiting became quite aware something was going wrong. My Dad came down, and I didn't - I didn't know this, but my friend told me that my Dad sort of, he knew straight away. He took one look at me, and he was like 'okay, he's got bipolar'.

Luke describes putting information together in illogical ways and reading meaning into everything.

You've got a million ideas coming at once, but they all make sense. So, like you know - when you're feeling normal, you might be on the way home from work, you might have an idea in your head. You might write it down on your iPhone. You know, when you - you could be having dinner with your family, your other half, you have an idea. And it goes to the back of your mind. And I suppose everyday life, we come up with ideas all the time. We're always thinking of different things. When you have psychosis, every single piece of information available to the brain, you seem to be able to access it, and it all seems so interesting. There's a reason for everything, there's a reason why this sofa is grey. A higher reason. There's a, there's a, there's a deeper meaning to this being grey. Perhaps because I sat on the grey sofa and not the red sofa, I'm the devil. Or whatever. You come up - And you put together pieces of information that have absolutely not logical pathway. And, but there's a true reason behind it, you are one hundred percent deluded into believing that something is real. And that's what makes it dangerous, you can do very silly things based on this, based on information that is wrong. Or not wrong, but at the time you thought it was right. And that's what I love about psychosis. You know? I think my life's been so much more interesting because I've had this, this, this condition. And if - Like what I've done when I've been psychotic, I just think - could be, it could be the funniest thing ever. You know? If you didn't have - don't have bipolar, you would never have experienced the high that people with bipolar experience.

Luke, who was diagnosed with bipolar disorder, experienced depression since his early teens. He started having delusions that MI6 were “onto” him soon after starting a new job and moving to a big city.

I've had issues with depression. Which probably sort of mid teens, maybe started about round 15, 16. And that was when I was in sixth form, and I started seeing a - seeing a counsellor. So I had these issues with depression going on. But they weren't sort of latent, they were - they were disruptive. And like when I left school after A levels, when I went to [a big city] and worked for [a multinational professional services firm]. It was about in my second week at the firm. That I got psychotic, and I got sectioned. It wasn't a great start to work. I mean, I was in a high security mental health ward at 18. And it was a, it was a crazy experience, just to experience it. It was, you know - I started to think MI, MI6 were onto me. I started to think that I was god. I thought I could predict the result of the Scottish referendum. My brain was working a thousand miles an hour, and it was quite scary for my friends and family. Couple of friends had come to visit me, and her friend - we lived in a flat together And you know, they started to - they were saying "Oh, what's up with Luke?" I started to go walking at midnight. I couldn't sleep, for days. It sort of culminated in my Dad ringing up the police and the ambulance. He said, "There's no way you can control this." And sort of next thing I know, I'm waking up in a ward. In a 136 room. Which is a glorified padded cell. 

Luke compares the support he gets from his CPN, who is “brilliant” with his psychiatrist and GP.

I've got a carer. He's a, he’s called a community practice nurse. I call him my carer, he's brilliant.

Yeah.

That's more of a - that's more of a - Comes to my house, or we'll meet at a café, we'll have a cup of coffee - have a cup of tea at mine. We'll just chat. From a health perspective, from a - from a NHS angle, I suppose.

And I have a psychiatrist. I don't have a high, high opinion of psychiatrists. I've always thought my carer's more intelligent, even if he doesn't have twenty five letters after his name. But -

What's the experience been with the psychiatrists?

I find with the psychiatrists, they tend to have a premeditated - premeditated perceptions. You know, they don't tend to - If you think a patient is a box of stimuluses - stimuli, that's the word. And you need to open each patient's box, and you've got loads of information about them. But every patient has a different box of information. My carer, the community practice nurse, he seems to be able to open everyone's box and open everyone's bit of information and make his own judgement, his own perceptions. Whereas the psychiatrists seem to go from the books. They're like - I've always had a bad opinion, ever since that guy wrote to me and said "You don't have anything wrong with you." And it's - But they, they all have something wrong. They all, they all seem to do something wrong. They, they're - they're so inhuman. And I think in something like mental health, you need to have that human touch. 

It's what everybody says - you know - you're a human being talking to another human being, and.

Oh, yeah.

Empathy, and being there in the room [inaudible]-

Yeah. Yeah. And it's - that's it. If a friend of mine had issues with mental health, I would more than likely recommend to someone like my carer, who's going to sit there and listen to them. Whereas a psychiatrist will just try and reach a diagnosis. They'll try and get something very, I don't know, scientific.

And is it mostly the psychiatrists that have done the sort of medical prescriptions and stuff? Or do you see a GP as well, or?

Well, [sigh] they sort of - I see a GP, as well as a psychiatrist. A psychiatrist - My carer is linked into them. So the carer will talk to the psychiatrist about changing medication.

Okay.

So if my medication - I'm looking to go down from 200mg to 100. And that will sort of effectively go via my carer to the psychiatrist.

Okay. Ah, that's interesting.

Because they'll explain better. I recently had a meeting about a couple of months ago, which was psychiatrist, carer, in the same room.

Right.

And, yeah. The psychiatrist just kept talking about definitions and, blah, blah, blah, blah. And actually, all we wanted to talk about was potentially changing the quetiapine to aripiprazole.

Right.

Which is an atypical antipsychotic. Slightly different, with less side effects.

Right.

Eventually went onto that, and it didn't work. And I've gone back onto quetiapine. But that was when I achieved the drop from 400 to 200. So it was a success.

And was it easy to communicate that? That part where you were saying, "This isn't working, let’s go back again?"

I had to use my carer as a medium, yeah. And I think one of the issues is - for a lot of people - if you haven't been diagnosed with anything in your life, your GP is your point of contact.

Yeah.

You know, that's - you've always had a - everyone has a GP. And for maybe a lot of people, that is all they have. 

Yeah.

They don't have - they're not - you know - They don't have a health condition that, that, that needs anything else. So the problem is that these GPs aren't - aren't educated enough in mental health.

Sure. They're general practitioners [laugh].

They are general, by definition.

Yeah.

And, I've had - I've had - I remember trying to go to my GP for, for a bit of help when I was younger, and I got absolutely nothing.

Right.

Absolutely nothing out of the guy. 

During the first week in hospital Luke was “scared” and “destructive”, but after the medication began to work he returned to being his “normal” self. He has “great memories” of staff on the ward and goes back to see them.

From my experience, the first week, you're still - you're so agitated that you've been sectioned, you're so - you're a little bit scared. You're not allowed any leave. You're not allowed out of the hospital any time of the day. You're a bit destructive. I remember picking up a, one of those sort of traffic cone shaped - the cleaning cones. I remember picking one of those up and trying to bash everyone round the head with it. And, yeah. Can't remember why, but - you know - I'm psychotic, I'm allowed to. But. And then you sort of become friends with everyone. You start to have a bit more - yeah, have a lot of respect for the staff. Because after you've been medicated and you've been brought back down, you are your normal self. You're - for me, I'm - you know - normal Luke, respectful guy.

And I've got great memories of with the staff. You know, I still often go back and see them. And they're fantastic. And you - you sort of indulge yourself in occupational therapy. You can find yourself watching telly, or - you know - making a pizza. Or going outside, and playing croquet with the occupational therapist. And then it was always [clears throat]. You can only - It's only going to be as good as you make it. And I've made some great friends from being in the hospital, both times I've been in.

At first Luke didn’t enjoy his CBT sessions but he now looks forward to them. They help him find out more about himself.

I've always thought CBT was a bit rubbish. From what I've heard about it, I thought what's the point? You know, you just sit there and talk. And I was put in contact with a, someone who's training. She works as a nurse, a community practice nurse, but she's like - she's looking into further training. And I thought yeah, go on then - if I'm not paying for it then, it's on the NHS so - and it helps her, everyone's a winner. So she said "Oh, it'll be fifteen to twenty sessions." I was like "Okay." And I went along to it, and the way I felt with the first, the assessment is basically telling them your life story. And I went to the second session, and she, she sort of whipped out this piece of paper she'd drawn on. And all of my insecurities were on there. And I was like "Wow, you found that all out?" And it was really hard-hitting. And I didn't like it. And I almost didn't go back. Then I texted her, saying "Not sure if I'm coming again." And then I said - next session, I said, "Fair play, but - yeah, if you're going to be that hard-hitting, then I won't come again." But then I suppose from my experience of CBT, it's sort of like stripping you down, and working out why – the, the relationships between thoughts, and - and I speak quite highly of CBT and my therapist that does it. 

And did it - I mean, did it help, do you think?

It is helping, yeah. I'm about five, six sessions in.

Okay.

So I've got, I've got a little while to go.

Okay.

But, you know, I look forward to the sessions, in a way. I find - I've become more self-reflective through doing it, and I sort of find out more about myself. Yeah. And it get - You know, any advice you get from any health professional is going to be good. And if I get any extra advice, I'll take it, and I learn more from that person.

Luke’s brother saw the signs that he was unwell and got in touch with him just as he was contemplating suicide after his first experience of psychosis.

I'd say the most important family member is my brother. He has - he's got that sort of caring, looking over me type, anyway. I mean, even more so - it was in - It was September when I got signed off work, because I nearly killed myself. I was very close to suicide. 

That was 2016? So that was just gone?

Yeah. And that's effectively why I was signed off work.

Okay.

Yeah, it was my brother that noticed the small signs, more than anyone else.

Right.

He picked up on patterns of my social media use.

Right.

He realised I'd been going out drinking a hell of a lot that, in that week. 

Okay.

I think he realised how isolated I felt. And, yeah. He sort of said to me, you know, "Why don't you come round, have chat?" And when he invited me round, I was sat next to a shoebox full of medication. Enough to kill me. And I'd written a suicide note.

Right.

It was the closest I've ever got. I'd never written a suicide note before. And I went round to, went round to see him. And I was in tears. Literally. Minute into conversation, he's said "Let's go and have a cigarette. Let's talk about it." Then I couldn't hold it in. And I must have cried for an hour. Full on, all going that whole time. And he just drove me back home. From [the big city]. He said, "You've got to go home." And, of course I'll always remember that, what he did there. But it wasn't necessarily being the hero of the hour. It was more that he was the only one that picked up on those signs.

You know? Things that had I taken an overdose and died, people would have realised after. They would have gone 'oh blimey, he put that on Facebook'.

Luke said while people under 18 would be able to show compassion for someone who has cancer, they find it more difficult to understand mental health issues.

You know, you don't have your own identity at that point. So I think, you know - I don't think there's a solution to making it easier for young people. You know, perhaps under 18. Because you need everyone to mature naturally. But at the same time, go back to the bit about the physical illness. Even when you're 12, you have the capacity to understand something as serious as cancer. So if a friend of yours got cancer, even if you're 12 years old, you're going to look after them.

You're going to be sorry for them, you're going to go and visit them, you're going to be a great friend. You know? Everyone has that in their human nature. But I think with depression, with mental health, mental health conditions - especially psychosis - at that age, kids don't have the capacity to understand.

Before his psychotic experience Luke, who was later diagnosed with bipolar disorder, suffered from depression. He struggled to concentrate in lessons and only one of his teachers noticed.

And I'd work until three in the morning. I'd suddenly find this energy. I, I'd read the last weeks of syllabus. I'd go back, and I'd be like - I didn't even pay attention in class. I mean, it was pointless me going to school. I would just go to the lesson, I would, you know, just sit there just to show my face. I couldn't concentrate. You know, ten minutes to go, I'm rolling up a cigarette. And I'd go straight home and have a nice coffee. And it was pointless being in school. And I remember I got - the teachers were onto me all the time. You know? You can't expect, you can't expect teachers to be psychiatrist level of understanding. But there's a massive, massive issue in schools at the moment, I think, with kids and stuff. From, from a first hand experience, the teachers really didn't understand depression. You know? They, they just thought 'ah, it's just a teenager, he's going through - thinks he's going through a tough time, wait until he gets to the real world and, and has all these difficulties'. But, no. I got quite angry at school. I got angry at myself. Angry at the teachers who would sort of say, "Oh, why aren't you turning up to lessons? Why don't you buck, buck your ideas?"

The only person that picked up on it was my English teacher. There was a - I remember vividly. There was a lesson that - I was always really vocal, I'm a vocal guy, like to make, to crack a joke or two. And she asked me a question. And I said "I don't have an answer." And she was like "Okay." And she was smart enough to realise something was up. And at the end of the lesson, she said "Can you stay behind, can we have a chat?" And I cried. I started - I burst out in tears in front of her. And I said to her, "Ah, something's - it's just something wrong and I don't know what it is." And it was almost that despair, of not having an answer for why I feel so low. When throughout - a lot of childhood had been idyllic, you know. You have that naivety of youth. 

And that wasn't long before I was diagnosed. I sort of managed to get through sixth form. And I managed to get the grades I needed for the job offer. I sort of skirted through. I mean, my attendance was awful. I couldn't go to school, half the time, because I'd been up until five the morning the night before, and I'd slept through to one in the afternoon. I kind of felt this peace at night time. When everyone else is asleep, and everyone else has switched off, it's just me alone, with my music, with my thoughts. You know, I'll sit in - I'll sit in my conservatory for hours, listening to music, having a smoke. Yeah, and just - just relax, with no pressure. And then suddenly you go to school, there's seven hundred, eight hundred kids around. You know, you've got all your mates. They want you on top form. They want you to be making, cracking the jokes, and. It was just a horrible time for me, sixth form. So in a way, you know, once I'd got over the fact I was diagnosed really short into my - when I was 18, at work. Once I got over that, I was kind of relieved that I finally had a diagnosis.

Luke thinks mental health should be part of the school curriculum.

In school - we had more assemblies on kiddy fiddlers than we did on mental health. You know, it was like, "Don't get in the back of this guy's van." And we had a policeman to come in to tell us about it. And I said "Fair enough, I'll go and get my lolly at the sweet shop." 

But you know, I don't remember one thing about mental health. I never remember in school there being any education around mental health. There was one lesson in, in - it was - learning for life. Or PH - PSHE, or - Every school has a different name for that, don't they, you know.

And we just had like one lesson on mental health. And you had to put your hand up, and they went round the class saying "How stressed are you, from a level of one to ten?" And obviously I did – I was like “I'm one, I'm not stressed at all.” Because I was one of the cool kids at the back. But, yeah. It does - I've got a sort of bit of anger about, about school.

Yeah. Do you want to say more about that? About the school thing? And what you think should have happened? Because that's sort of been in the press again lately, as well, hasn't it - about they're now saying schools should be given more kind of control - diagnosing, and all that sort of thing.

Yeah, there just should be a little bit more than - It just seems very old-fashioned to have a counsellor, and a few referrals to that. And just to tick a box, we're going to have a class where we talk about how stressed we are.

You know? Apparently, the average high school student in America has higher stress levels now than a psychiatric patient in the 1960s. Like the world is a lot more stressful these days. We're all more stressed out. The world - the World Health Organisation say - are saying like - I can't remember - it was by 2050, or 2020 by, not by - Depression is going to be the most, one of the biggest issues we've got in health.

Luke applied for PIP but didn’t get it. He describes what it is for and some of the questions he was asked.

I applied for Personal Independence Payment a while ago, but. That was - that's known colloquially as the thing you have to apply to three times, to get.

Really?

Because I didn't think I was eligible for support as you know, I'm in full time employment, I have enough money to get by and stuff like that. And my carer said, "Actually, the reason this exists is to - you know - you might run into additional expenses that other people might not. You, you might need extra therapy that's private." And suddenly I thought 'ah, nice - yeah, yeah I suppose that would be, that's a nice, that's a nice benefit, and it's something that would help me, and I am eligible for it, because I think that's what it exists for, so I'll apply'. Didn't get it. And I then - never applied again since.

It was just - You know, some of the questions they ask, 'Can you cook a meal?' I said, "Yeah, I cook." I replied "I can do quite a nice Thai green curry, actually."

But, yeah. I don't think they appreciate jokes in the application. But nevertheless.

Luke broke up from a 4 year relationship just before he was feeling suicidal. He describes how his ex-girlfriend “rode the waves” of his bipolar disorder with him but feels relieved now that he doesn’t have to worry about anyone else.

I was with my ex-girlfriend - I got together with her when I was 16, nearly 17 at the time. Ooh. We broke, we properly broke up in September. I remember it was the 4th of September we broke up. And it was the 10th of September the brother drove me home. But I wouldn't - It was a big part of it, but maybe it was the fact that I was in such a bad place, it wasn't a good place to have a relationship and that's why it broke down. But in those - in what was nearly four years, it was just over four years [sigh]. We, we, I think we broke up about four times, and got back together. Very destructive relationship.

The, the first episode of psychosis, I remember - it was very difficult for her, she was at university at the time. And, yeah. She'd, she'd do her best to come visit me in hospital. And geographically that was tough, because she was at uni.

But generally just the waves that, that I'm surfing on - I feel that in that relationship I sort of - my ex-girlfriend was on the, on the surfboard with me, riding those waves. And I think that's - that makes for a very difficult relationship, when you know, you might, you might think to yourself, you know, 'is this guy worth it?' Is it, you know? On, you know - but also at the same time, I think [clears throat] if you're in a relationship with, with someone with bipolar or with psychosis, you - you're going to see a fantastic side of them, sometimes. When they're on a high. You know, you're going to get the whole package. But then at the same time you're on a low. You, you can, you could say, you could say, "Oh, I love you." And I'd turn round and go, "I'm not in love with you." Or, I wouldn't - I wouldn't be able to show emotion when I'm, when I'm depressed.

So I think it's very difficult. And the position I'm in now is, I've been single for - you know - five months. It’s been a little while. And I like to think of myself as happy being single. Because I've not got anyone that I've got to worry about.

Luke accepts that when you’re in a bad place you can’t achieve much. So when he has good days he likes to recognise what he’s achieved.

When you - when you're in a bad place, you don't really achieve much. When you're in - when you experience depression, you experience psychosis, you're a complete under-achiever.

You, you, you're giving nothing to society. That's the truth. Okay, you might be, have of a job, that you're still paying - you're paying tax, but. In your mind, you do nothing. If you can one day pull yourself out of bed while it's still light, decent time - even if it's eleven o'clock, have breakfast - actually eat a meal properly - go out and have a walk, that you planned to do. The entire route that you planned. You get back, you've had the fresh air, but more importantly you've actually done something. It's the crux of occupational therapy, is doing stuff that really - that, occupational therapy is pretty much about exhibiting physical actions or emotions that relate to what you would do in a job. So if you go in - If you're in hospital and you cook a pizza - you've gone to buy the ingredients, you've thought about what ingredients, you've planned it. You know? Execution. Production. You know? Fundamental.

And, yeah. It is that sense of achievement. Because you also know that there's going to be a day in the next week where you won't be able to do it. And you feel good that you've actually been able to get out and achieve what you set out to do.

Because all your goals and aspirations go out of the window, at that, in, in a bad time like that. So your goals and aspirations become, 'can I go for a walk tomorrow?'

Luke listens to music all day and says it “numbs out the voice” in his head and helps him “control” his “emotions”.

Music's massively important for me. I listen to music about, ooh - god knows. Eight hours a day? Whatever I'm doing, I'm listening to music. When I wake up in the morning, put them on. Downstairs, cup of tea, and music's on. And it's on a lot at night time. I mean, I can play online poker, and I'm listening to music the whole time. I'm more into lyrics, so much as music. And, therefore that's why I listen to such an array. I can listen to, you know, whatever - you know - Lionel Ritchie, then put on Bring Me The Horizon. And it, it helps me to relate to lyrics. There's actually a Bring Me The Horizon album I got into recently, has a real emphasis on mental health. And I found the lead singer, I found his commentary online. And just listened to him talk about, talk about the music, and why it means a lot.

Who's the lead singer?

Ollie Sykes. And then - But yeah, I think - One thing - When I made friends with people with schizophrenia in hospital, they - there was one guy who always had a radio with him. And he said "Oh, if I have to switch off my radio, mate, I wouldn't be happy." Because it numbs out the voice in his head. Now, I don't really - When I'm psychotic I get voices in my head, but it's not really a predominant [cough] symptom for me. But music just helps to control my emotion.

It helps me just to forget about the highs and the lows. For me, like we talked about earlier, about that scale of zero to ten. Music seems to put me on a five.

As nothing else can do. And I get really agitated - I would get hugely agitated if I didn't have music.

Having psychosis has made Luke challenge this thoughts about religion.

Well actually struggling with psychosis and such has maybe challenged my thoughts about religion, a lot more. I, I suppose I've lost a lot of naivety. And, I think that's quite healthy, actually. It's healthy to start challenging what might have been conventional thinking before. So, yeah. It's not affected my belief in religion, but it's made me sort of challenge it a lot more.

And has, has your sort of religious beliefs - has that been a support, a source of support, or?

Well, when I've been in hospital, we've - we used the chapel. And it was a multi-faith. I mean, it was really sort of borne out of Christianity and the bible, the whole practice we had, but. It was meant to be just a place for quite reflection. And so I think psychosis has made me more appreciative of other religions. Certainly other practices, and it's made me think actually – I, I talked earlier about, about you know, challenges. You know, everyone says, you know, "Why does god challenge people?" You know, go back to the story of Job. Why does he challenge this, this guy who's really good, isn't a sinner? And I used to always think sort of - have a sort of naive look, look upon that. I used think oh, god challenges us in different ways, but. God, god's challenged me over the last three years. Well, maybe god doesn't exist, but. For me, it's like - it was easy to say it when I was 16, 17. But now I'm the one being challenged. And I'm like actually, hold on, it's tougher than you think. Why is - if there is a god, why? After the hard work I put in as a kid, why am I getting this? So, yeah. Sort of opened the mind up a little bit. And I think that's a good thing.

Luke finds that drinking alcohol socially makes his psychosis worse. Cutting down has improved his mental health. He thinks it’s important to “have the maturity” to do that.

For me, being the person I am, and that I was – I’m a social guy, you know, I drink a lot, you know - blah, blah, blah. For me, drink - drinking. I've cut down my drinking. It's helped me massively. It's - It might not be relevant advice to many people, but it could be relevant to some. And that's what's important about it, because if it's relevant to, relevant to you - if you cut down on your drinking, that'll stop your psychotic symptoms a lot. It'll, it’ll reduce them. When I came out of hospital in March 2015, I didn't have a drink for six months. I decided I'm going to go proper teetotal, see what it does to my system. And, I experienced a lot less psychotic symptoms. 

That's amazing. 

And now when I - Now I've gone back to drinking, I’m drinking considerably lot less. You know, I'll have a sesh now and again. Yeah. I don't, don't go all out, you know - control it. And, and for me, that was a great thing to control, like when I was only 19, because we all live our lives quite uncontrollably when we're young, but. I felt a bit sorry for myself that I couldn't do things like my mates could. But, but really, that - putting the control of that in place - And that could be an example that's applied to something else. You know, you might be into your drugs, you might be into whatever - you know - keep everything under control. And yeah.

Okay. And then, that's obviously - you know - that was something that - a strategy that you kind of came up with yourself? Obviously you noticed that there was a link there, and that there were benefits? So, sort of your own.

I noticed that my drinking patterns were - I drink a lot more in the upload to a psychosis. And it would sort of be a vicious cycle, really. I also found like being hungover would affect - I'd feel more depressed, and,- more likely to do stupid things. But for me, it felt like I was putting myself at a higher risk of getting psychotic when I, when I did drink. And what, what was funny for me as well, when I stopped - I call it stopped drinking. I, I sound like an alcoholic, I sound like it was a real issue for me. But actually, it was having that maturity to accept that this is an issue for me because I've got psychosis issues. It's not just saying, you know - it's not saying I'm stopping alcohol because it's destroying my life. But it's going - it's a massive impact in psychosis. Actually, all the medication I take says 'don't drink alcohol'. 

No one's going to do that, no one listens to that. But you know, having that - stepping up and being mature, probably before your time, if you get diagnosed young. That's the best thing you can do. Step out of your kid - you're not a kid any more. Grow up, pretty much. Grow up faster, and you'll reap the benefits. 

Recovery from the experience of psychosis through treatment in hospital happens “pretty quickly” for Luke, although the post-psychotic depression lasts longer. His “game plan” is to reduce the regularity of the psychotic experiences.

Because that's one thing you've got to remind yourself with psychosis - as catastrophic it can be, as bad as it can be, you go ill and I would say within - you know - a week and a half of being sectioned, under like intensive care, you do feel better. And that's what makes the management and treatment of psychosis quite interesting actually, because your real game plan is reducing the regularity of psychotic episodes. Because you know, it's not ideal, getting psychotic. Because not only will you be in hospital potentially for four weeks, or even longer, you're going to have the post-psychotic depression. You're not going to be able to go back to work suddenly. For me, both times it’s been a hell of a long time, from being sectioned. Which is pretty much while you're still in work. Or, or in study, whoever you are, whatever you do. You know, there is that - that length of time that it does take away. But you feel better from the psychotic symptoms pretty quick.

Luke says that patients should be treated like non-executive directors, and valued for the perspective they are able to give into their mental health experiences.

I've got a lot of respect at the moment, because the trend I'm seeing in mental health is that patient perspective is becoming hugely important. Hence this whole thing we're doing today.

Exactly.

This whole website is about - It's not relying on the health professionals, it's relying on me-

People, yeah.

Yeah. Want to learn a bit about psychosis? Maybe watch one of my videos. You know? Or the video. And just keep that trend going. Keep respecting the fact that patients have a better insight than you'll ever have. You know? If – Who's going to know more about bipolar? The patient with bipolar or the person who's read a book about bipolar? That's, that’s the point I'm trying to make. But of course you do need the academics, you need the people that read the books and the theories, because they're better at putting them in the second book. But, yeah. Keep that trend going, I like it.

That gives a whole other perspective on the move towards - you know - involving patients in decision [inaudible] people in decision making about their choices, and all that sort of thing. Yeah

It's hugely important. I think patients are like non-executive directors. You know? Non-executive directors are paid decent money to do not much, just offer their perspective. And I think patients are free non-executive directors. And they're subject matter experts that would be really crucial when it comes to big decisions in the boardroom. Or future, you know, future discoveries or advances, yeah.