A-Z

Psychosis (young people)

Managing wellbeing with psychosis

Here we talk about things people discovered for themselves that helped them to feel good, and stay well as much as possible after first experiencing psychosis. Managing wellbeing didn’t mean always feeling well. Sometimes it could mean accepting that there would be good and bad days. People found it important to look after basic needs like sleep and diet. Hannah reflected that it was important to stay “in touch with how you are feeling”. Other things that helped people were keeping happy and reducing stress. These weren’t only good for general wellbeing but could also have an impact on the nature, severity and timing of psychotic experiences. You can read elsewhere about the things people had discovered that helped them directly manage their psychotic experiences and reduce the effect the psychosis had on them in the moment.
 

Nikki says her psychosis is worse when she’s stressed and has less impact when she’s happy. The voices don’t “really affect” her any more as long as she manages her stress.

View full profile
Age at interview: 19
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
I don't think so. I think since I was 14 it's been pretty similar. It's all negative. And it's very frequently, if not constant. It gets worse when I'm stressed. It gets better when I'm happy. And that's pretty much how it is. 

And is that something that you've learned to recognise over time?

Yeah, yeah. I've learned a lot. What triggers me like what doesn't, what helps, what doesn't how I can improve the moment that I'm in, that sort of thing. I've learned a lot more about it and have learned a lot more how to cope with it to a point where it doesn't really affect me if, as long as I'm not like overly stressed, it doesn't really affect me any more. 

Okay. And so what do you think's sort of helped the most then looking back over, over time?

I think it was learning to talk about it and meeting people that had similar experiences. It was definitely mainly talking and through like volunteering and campaigning. Using it as a, as a way to do something good, so that it wasn't all bad. It had a purpose, really.
 

Andrew X talks about the importance of keeping busy and getting enough sleep for his mental health. Distraction tools also help when “dangerous thoughts come along”.

View full profile
Age at interview: 24
Sex: Male
Age at diagnosis: 14
SHOW TEXT VERSION
PRINT TRANSCRIPT
Can you tell me a little bit about the kind of things that you have discovered that help you?

Sleep. And sleep is a really difficult one, because when I was unwell, sleep just did not happen, because I was hearing voices, I was anxious, I was paranoid. So just saying to someone get some sleep is not really a valid solution. But sleep became really important to me. Doing something with my time and I know it sounds incredibly trivial, but for me, the biggest danger is being at home just sitting there on my own thinking, that leads to a very slippery slope very very quickly. So something about for me just even if it was volunteering, some light stuff that's not too heavy that I can engage and get involved in and you know, really use to help my to help improve the way, the way my mental health is. What else? I suppose, knowing what distraction tools I need at the moment. So sometimes if I feel a psychotic experiences coming on, I need to distract. It's like there's a certain threshold that I reach where I'm like, nah, you, you can't do any more [laughs] any more mindfulness techniques. You just need to distract yourself and boot up the computer and play some computer games, 'cause the alternative of not distracting myself is some very dangerous thoughts come along and very dangerous experiences. So it's knowing when to be able to distract. 
 
Text only
Read below

Green Lettuce tells people who are hearing voices to ignore them, get a 'proper routine' going,...

View full profile
Age at interview: 25
Sex: Male
Age at diagnosis: 20
HIDE TEXT
PRINT TRANSCRIPT
If you are getting voices in the head telling them stuff that they don’t want to know, ignore it, try your best to ignore it no matter how much it’s saying it. But try and keep your mind as occupied as possible. And try and get a proper routine, daytime routine. That you awake in the normal hours. The night times in my opinion can make it worse. Because you’re not interacting with other people and that definitely doesn’t help at all.
People mentioned things that they had learnt from others, as well as things they had discovered for themselves over years of being unwell. Simple everyday things like spending time with pets, listening to music, or going for walks could be part of this. The main ones people talked about were:
  • Accepting the ups and downs of managing wellbeing with psychosis
  • Being happy and reducing unpleasant experiences
  • Doing hobbies with psychosis
  • Doing physical activities and setting achievable goals
  • Mindfulness and meditation 
  • Religion and spirituality
 
Accepting the ups and downs of managing wellbeing with psychosis
 
Managing wellbeing takes practice. Some people reflected that it was important to try to be vigilant about their mental health and anything that might make them unwell. NIkki said her mood tends to be “quite up and down” and she can be impulsive, and lack motivation and energy. Self-awareness was important for Becky, and when she experienced psychosis she lost all sense of herself. Because of this many people we spoke to felt they had to be more aware than most people about what they needed to do to keep well. Luke described having what he called ‘control points’ in his life.
 

Andrew X describes a traffic light system he uses to manage his wellbeing.

View full profile
Age at interview: 24
Sex: Male
Age at diagnosis: 14
SHOW TEXT VERSION
PRINT TRANSCRIPT
So I've sort of a green/amber/red sort of thing and green is sort of like that, you know, I've a lot of space in green. If I start approaching amber, the, the space gets a bit shorter. The space do I really have to do something. And if I get in that sort of red zone, I'm not coming back for a long time. So I have to be really proactive to know myself. Know when I'm having a couple of days. Know when I haven't had a coupla day's sleep. Know when I'm feeling stressed. Know when I'm anxious and then and take proactive steps to try and manage that in the green zone [laughs] so then I'm not 'cause if I get to the orange and red zone and I'm trying to manage that it doesn't work. So when those voices come along, when those psychotic experiences start, that's not good. It's not good at all. 

So what does what does orange zone look like?

Orange zone is when I sort of, if I don't act soon, so if I don't either reach out to a professional or do something, things will get dodgy. So I stop, I stop going out and I start isolating myself. I may start some odd sleeping behaviour. My sleep hygiene, my sleep will go to the pot [laughs]. I will start having suicidal idiations. I'll start self-harming sometimes. So those are the, those are the things that I have to watch for in that amber zone. And red is like, you know, you may as well get the Mental Health Act and put me in then. It's such a short, it's like, it's like a cliff drop, because once you start rolling, rolling down that hill, it's really difficult to bring yourself back up again. 

It sounds like you are getting quite a good handle on seeing patterns, I suppose. 

Yeah, I can, I've got a really good—I can, I can tell you exactly when I'm struggling and exactly when things are not going too well. When I'm in that, when I'm in that really, when I'm in that space. So I know, I know how long roughly I've got [laughs]. You know I can sort of be able to, not predict it, but I can tell you that I need action. Something needs to give. 
 
Text only
Read below

Joseph said the best advice he was given by a medical professional was “be kind to yourself” and it made him re-evaluate things and take things “really slow”.

View full profile
Age at interview: 22
Sex: Male
Age at diagnosis: 21
HIDE TEXT
PRINT TRANSCRIPT
I really just remember the doctors saying to me, a couple of them, that - just be kind to yourself. And yeah, I feel I could have quite easily ignored that. But just split second decision, I just thought 'okay, I'll listen to that'. And that's the route I took. And I think it was the best decision. Because I just took a really slow time. The people around me gave me the space to do that. 

And eventually - I didn't even realise what I'd lost, so quickly. Like social skills got so bad that, overnight, that I didn't even realise that I didn't have them. Sorry, that I had them before. And so it was just about rebuilding all of those things. So, now - 2017- quite a bit later, feel in a position where I am stable. And I won't say there's an end goal to recovery, but I certainly feel “recovered” in most senses. And as I say, the episode itself was quite - relatively brief.
Despite this, people also recognised that sometimes there would be times when they weren’t able to manage so well. Although Dominic has countless strategies which he uses to “battle the symptoms”, he says his voices can always throw a “curve ball”. Accepting this, taking each day as it comes and celebrating the small wins were all really important.
 

Becky has days when it feels like someone is physically pushing her down, but she says its important to remember that not every day is going to be like that.

View full profile
Age at interview: 24
Sex: Female
Age at diagnosis: 20
SHOW TEXT VERSION
PRINT TRANSCRIPT
But I still get days when I think, I don't wanna get out of bed. I don't wanna do this. And I know it's easy for everyone to say that sometimes. But sometimes it is so powerful, like it is physical, it's not just in your head, it feels someone's pushing you down and you can't get up. That's when it feels like, I suppose, it's taking over. And you get those days when you think it's not gonna get better. But it's a case of getting through the day and thinking, well, if it's not better tomorrow then maybe it'll be better the day after. I suppose it works differently for everybody. And some days, I can see that sometimes I can't and I need someone else to tell me that it'll be okay. But, it, it depends. But sometimes it, it still feels like it's controlling me rather than the other way around and some days I have better days and I think, actually, I can take control of this and I'm not gonna let it beat me. But just because you have a bad day doesn't mean every day's gonna be bad. I think that's really important to keep in your mind just, yeah, maybe bad tomorrow for the rest of the week, but it will get better at some point, even if it's just for a little bit. You just gotta keep looking for those good moments. 
 

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.

View full profile
Age at interview: 21
Sex: Male
Age at diagnosis: 19
SHOW TEXT VERSION
PRINT TRANSCRIPT
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?'
Being happy and reducing unpleasant experiences
 
Increasing positive experiences in their day -to -day life was seen as an important part of wellbeing for people we spoke to. Nikki notices her psychosis doesn’t affect her as much when she feels happy: “I’m just building up a pile of happy experiences and just gonna make that big happy part as big as I can get it.” People also spoke about the importance of being aware of and reducing exposure to drugs, alcohol and stressful situations and avoiding unusual or frightening images or stories that could act as triggers for psychotic experiences. For example, Hannah and Ruby, who have “visions”, found it important to limit the amount of frightening images they saw through posters and television. For Joseph avoiding watching upsetting programmes about war zones on TV helped.
 

The things that help Fran stay well are friendships, and staying off drugs.

View full profile
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
On and off, I was on and off for years and years. Then I got well for about, I’m crap with like time and stuff. But I got well for a really long time. And then I got really, really ill again. Then I got well for about four or five years. And then last winter I came again for two months in to hospital. And then since then I’ve been pretty good. Like I’m really, really trying to keep well now. And that makes a massive difference.

What’s helped most?

Quite a lot of things really. The people I love. Had some amazing people just stick by me, like all of my family and my friends. Some friends left, like some friends didn’t, but the ones that stayed it’s like they’re worth their weight in gold. But good stuff sometimes to a certain extent and self-motivation. But I’d say more than anything not taking drugs. I’m not a person that can take drugs.

So every time you got ill between the years, was it cos of drugs? Or were there different reasons or?

I think there were different reasons. But the different reasons always had an undercurrent of drugs, yeah.
 

Joe has found it’s important to limit the amount of negative things he is exposed to in a day.

View full profile
Age at interview: 23
Sex: Male
Age at diagnosis: 21
SHOW TEXT VERSION
PRINT TRANSCRIPT
One of my friends – the, one of the guys who was there when I had my first [inaudible], said to me sort of once about what he called 'the misery quota', everyone has a misery quota for the day. And your misery quota is only how much awfulness and craptitude from the world you're willing to accept. And at that point, when you've reached a certain level, you go 'nah, I'm just not going to - I'm going to go and like look at puppies, and read a book'.

Oh, I love that idea. That's brilliant [laugh].

Yeah, it's - Yeah, it is really good.

Yeah.

I'm glad I found out. Because at some point, you've just got to say 'I'm not dealing with this'. Like there was a TV show that one of my housemates really likes, which is - I don't know - am I allowed talking about names of TV shows?

Yeah, yeah - that's fine.

One of my housemates really likes The Walking Dead.

Okay.

And there was a particular episode this season, this year, that happened, where awful things happened to people. And I got about two and a half minutes into that episode, and my misery quote was just 'nah, I'm going'. And I just went and like - I think I just went and played Tetris on the internet or something. I thought I'm not, I'm not watching this, I don't, I don’t need this much awful in my life, I can just go and do fun stuff. And I think that is - that rule is a big part of how I'm, how I manage to cope. Yeah.

I love it. I love that, misery quota.

Yeah. Because once your quote is full - it’s like - Because I did a biology degree, a lot of stuff about fish stocks. Yeah, if you over-fish, eventually you're going to be left with lots of deep angry waters full of no calm fish. But at some point you just have to switch off. And that's how I deal with life.

Cool. That's awesome. And you mentioned meditation and mindfulness. What does that kind of look like? Or what would you tell people about that?

I tell them it works. Because it took a really long time for me to find something that actually worked.
 

Sameeha encourages everyone to “follow the source of your own happiness”.

View full profile
Age at interview: 22
Sex: Female
Age at diagnosis: 21
SHOW TEXT VERSION
PRINT TRANSCRIPT
For me, my hobby is everyone has that little thing that kind of makes them excited. Like whether it’s a boy band or music. For me, I like music at every day I'm always there's a time period where I'm just sitting listening, relaxing, making sure I have my own personal time. That's definitely a, a huge part for me. A lot of times when I'm just in, in huge groups and massive shopping malls and is are so much energy, it's so draining. So I always need my own time, my own me time and that time where there's just silence. Personally, I meditate. That helps me. Just get rid of kind of any crazy thoughts or just buzzing thoughts in your mind. Those kind of things. But like, like I said, yeah, just everyone has their little ‘go to’ the little form of happiness, whether it's like a silly show like, Come Dine With Me. [presenter] makes me laugh [laughs]. So yeah, just little things like just always follow the source of your own happiness, kind of thing. Just follow the things that make you happy and you'll be fine. 
Doing hobbies with psychosis
 
Hobbies such as listening to music, cooking, or gaming, were very important for some people and helped them feel busy, happy and well. Hobbies could also be a way of meeting new people, and getting out of the house. When people felt like being at home on their own, having a hobby could be a good way to pass the time and a useful distraction from thoughts.
 
Hobbies and pastimes, such as listening to music, weren’t just about keeping busy they could also help people to feel better prepared to manage their mental health. Lucy suffers with panic attacks and finds that playing the clarinet helps her to naturally regulate her breathing and calms her down. Hannah listens to music or watches something on TV to distract her when she is seeing visions. Listening to music was also important for Luke and Sameeha.
 

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

View full profile
Age at interview: 21
Sex: Male
Age at diagnosis: 19
SHOW TEXT VERSION
PRINT TRANSCRIPT
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.
 

Fran loves dancing, cooking and also enjoyed writing poetry and doing art therapy when she was unwell. They put her “in a zone” and she forgets about everything.

View full profile
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
No. Basically like I went to dance classes. I really enjoyed that. I wanna get back into doing that. But, yeah, I’m pretty like content with things as they are at the moment. As long as it keeps going well, I’m like happy. When I was younger, I really wanted stuff. Like I was like, “I’ve got to see the world. And I’ve got to go and do amazing stuff.” And now I’m not really like that anymore. I just really appreciate the fact I’m not on a ward really, yeah.

Yeah, yeah, that’s really good. Is there anything else you want to mention that I haven’t asked you about? Anything that was important to you?

No, it’s been pretty thorough. Oh, yeah, I had an art therapist for a while. And that was good. That was another thing that really worked.

Was that in hospital or community-based?

Both. While I was in the hospital she continued the sessions.

So that worked for you as well?

Yeah, I mean she was just a really lovely woman. And she just gave me a space to draw, and then explained all these crazy drawings that I was drawing.

So now at home, the things that you keep going on with are like writing poetry that works for you?

Yeah.

Writing down your thoughts, that works as well

Yeah.

Any other things that work for you?

I’m quite a good cook. I like, I like cooking. I’m good at cooking.

Oh that’s good.

I think my food, I mean I cook really tasty food. I’ve got a good palate.

And you find that relaxing?

Yeah, yeah, I love cooking. I absolutely love it. It just puts me in a zone where it’s like I’m just doing the cooking. And that’s what I’m like when I dance as well. I forget about everything. I mean I’m not a good dancer particularly, but I go out and dance a lot on the weekends cos it’s more fun than just being sat in the pub bored. And, yeah, the same thing. Everything that puts me in the right there, right now. I like that feeling.
Gaming was popular with some of the people we spoke to. Joe, who enjoys playing Dungeons and Dragons (a role playing board game) said that having to “physically go to someone’s house” to play once a week is good for him. For Andrew X “blowing things up on Grand Theft Auto” provides a distraction that “safely overrides everything” else going on in his head. But using gaming as a distraction had to be managed and used alongside other strategies. Andrew X uses it as an “emergency break” and tries not to use it all the time as a “coping” mechanism. Dominic used gaming a lot, but looking back he thinks he over used it when he was unwell and recognises now that it became an “addiction”.
 

Dominic loves gaming as a hobby. It keeps his voices at bay, but he does have to make a point of stopping every hour to see if there is “anything going on” with his voices.

View full profile
Age at interview: 24
Sex: Male
Age at diagnosis: 21
SHOW TEXT VERSION
PRINT TRANSCRIPT
Yeah, I mean, it’s, it's very very very easy to think of a hobby as this bad thing when you're mentally ill, because again, for most people, leaving the house is the biggest thing. Let alone going out and doing something with that time. My hobbies still rely heavily around gaming. But, my mindset is different now. The way that I process it is different. I don't, I used to do something on Warcraft and then be like ’right, that's happened, I am now spending the next three days doing nothing else but playing this game to achieve that goal’. And that's how bad it was. And now, the pull it has on me doesn't really exist any more. I play it as much as I need to play it. If I need to, if I'm luckily enough to be able to identify my signs really early. So if I'm playing World of Warcraft the thing about for me the thing about gaming is, you're so immersed. It's so immersive. You can really get involved in the world and you can really become your character. But it can become too much at the same time and I was becoming too immersed and I wouldn't be in my mind, I would be in the game. 

And then something like a loading screen would happen when you've got to wait as little as ten to twenty seconds. But that seems like the longest time, because that brief period of anything happening is when it floods ya. It really wow, guess what, we ‘rah, rah, rah you’re a dick head, why aren’t you speaking to us?’ and you sort of ‘ok, music please music’. That's how I handle it. But now, I'm able to go ‘right, I'm playing World of Warcraft. I'm gonna play for an hour and after an hour, see how I am’ and I'll break the cycle, because I get into cycles where I will sit for hours and hours and hours and then after these hours, I’ve got ‘this’ [indicates his voices] to deal with, because I haven't spoken to them for six hours [laughs]. I'm like, okay, right. How I combat that is each hour, I'll take a break. 

And I'll go right, [indicates listening to his mind] ‘I've done that, right. No music. What's going on? Anything going on? Okay. That image is, yeah, yeah. Okay, right, so you are just- general pissed offness- nothing new, really. You are just really angry people as always. Okay, fine, brilliant. Is there anything you want addressed? No? Okay, cool’ and then I carry on playing. And if I have that moment where I take that break and they're like, you've got to do something right now, 'cause we are getting and I start feeling angry and stuff. 'Cause once they, once they get angry I get angry as well. And once, because again, it's in my head. But their emotions are my emotions in some way.
Physical activity and wellbeing
 
Quite a few people talked about the benefits of exercise. This could be going to the gym, or for a walk, or doing some other physical activity, and there wasn’t one thing that suited everybody. Green Lettuce will walk short distances whereas Luke will walk 16 km in a session. While for some it was the feeling that came from doing physical exercise that was most rewarding, for others the sense of achievement they got from doing exercise was more important. Sam has a “gym buddy”, arranged by her local Mind centre, and goes once a week. Going with somebody helps her stay motivated and she gets a sense of achievement from going as well as the physical benefits.
 
However, some people felt that the expectation to keep physically active was an extra pressure that they didn’t need. Motivating yourself to do exercise when you are unwell can be difficult. Chapman said he used to be very keen on sports when he was young but now just sits on his bed and drinks. Even those who managed some regular exercise had days when they didn’t feel like it, and felt bad about themselves for not keeping going with it.
 

Nikki knows there may be a connection between good physical health and good mental health, but its not easy to “just go for a walk” when you are coping with the side effects of medication and have “20 voices saying ‘you should go and die’”.

View full profile
Age at interview: 19
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
Well, my physical health isn't great. [Clears throat] Sorry. I've always been a little bit overweight. It doesn't really bother me as much any more. But it seems to bother my GP [laughs]. I think as well like with the lack of motivation that you get when you're experiencing mental health problems and the fatigue that you get, it's difficult to then, you know, have the energy to go exercise and go and get a healthy diet. I don't think people understand that, you know, that when you are struggling, you can't just go for a walk. You can't just go for run. It doesn't work like that. It's difficult. It's exhausting. And when you're spending all the energy you have into fighting the battle you're having inside your head, the last thing on your mind is going for a nice walk or eating an apple. Yeah, so it's hard and it does affect physical health, especially like with the side effects of medication and things like that. Yeah [laughs]. There's side effects of like medication can affect your physical health quite a lot. You know, like when I was really unwell when I was like taking overdoses and stuff, obviously that's a huge impact on your mental health. But I think there, there are many ways that experiencing mental health problems or psychosis can, you know, affect the mental health like your energy levels can be poor. Your sleep can be poor. Your diet. Smoking, drugs, alcohol people that have psychosis are three times more likely to smoke. There's many things. So I do, there is a million percent, a correlation there. But I don't think it's as easy as people think it is to overcome it. You know, when you're when you're having like 20 voices or something saying, ''You should go and die.'' You are not just, it's like it's not then easy to just go and sort your physical health out, even though good physical health can mean better mental health and good mental health can mean better physical health. It's like getting to that stage is difficult. 
 

Dominic experiences paranoia and voices that affect him worse when he leaves the house. Although it is difficult, he goes to the gym and says its his biggest ‘go to’.

View full profile
Age at interview: 24
Sex: Male
Age at diagnosis: 21
SHOW TEXT VERSION
PRINT TRANSCRIPT
Get to the gym. If you can't do the gym, get running. Go walking. Do something with yourself. Seriously, I cannot put into words how impactful it is. Just going for a five minute run. If you're somebody that sits in all day scared of that scared of this, go for a five minute run. But don't leave it at that. After the five minute run, come back and get a laptop, get some paper, and write down how you feel afterwards. Write down what you were thinking about during the run and how you feel about it afterwards. How those fears you had before the run never came true. That means next time, maybe go for a six minute run. Keep making that progress. When I went to my, when I started going to the gym, I was 25 stone, something like that. I was fat. I was big. And I was spending all my time in my Warcraft gaming. And then I stepped foot in the gym and it fucking hurts, it hurts. Don't, make no mistake, it is not a comfortable thing. But the physical, the physical discomfort disappears once you start feeling that mental boost. 

That big yeah, that was hard. But I've achieved something today. I've done this thing that I've been afraid of for so long and I feel great. Physical exercise was is still my biggest ‘go to’. If I wake up, 'cause even with all this control I have now, all this power I have now, there's a lot of days where I wake up and they're winning and I wake up losing. And I have to try to really push against it. And the gym does that for me. It just, it just fixes it. Go in there, working my ass off and getting angry at myself and pushing myself even harder. I walk away from that on, on the winning end. The tug of war is going the other way now. That's every time, without fail. I cannot recommend it enough. 
A few people we spoke to walked long distances during their psychotic experiences as a way of coping with the psychosis. Sometimes people felt restless or uncomfortable when they were unwell and found walking helped. Andrew Z and Lucy both walk long distances when they are having psychotic experiences. Lucy walks at night: “Some nights - it's not particularly safe, but like if I really can't sleep and I'm really feeling like my head's in a mess, I'll go for a long walk. And just keep walking until I think I can come home and just fall asleep“. 
 
Meditation and mindfulness 
 
Mindfulness and meditation are techniques that allow people to become more aware of, and accepting of, their thoughts and feelings. Some people find that using mindfulness and meditation allows them to notice thoughts, emotions, physical body, senses in the moment, and not to be taken over by them or to judge them. Many people we spoke to had been introduced to mindfulness and meditation by charities and mental health outpatient services.
 

Sameeha explains how meditation helps her and what she does.

View full profile
Age at interview: 22
Sex: Female
Age at diagnosis: 21
SHOW TEXT VERSION
PRINT TRANSCRIPT
Can you tell me a little bit about meditation and how that helps? Some people might not have thought of that. 

Yeah, yeah, sure. For me I just make sure I meditate every day I think try not to judge it. It's just about being mindful of your breathing. Sitting in a comfortable position. Quieting the mind. Making sure there's no outward thoughts that you're judging. Just, just sitting there and observing everything. So, that you are able to just…not take in everything and just being able to just take a step back and be the, not be the perspective, being the observer of it all. So, yeah, I just sit down breathe. If you need to count your breaths, that helps or there's mantras for people. Yeah, no, I just started learning about the chakras and all that a long time ago and the whole energy and because for me, the whole meditation it's like science and the whole faith and religion thing put into one. So—

So when you say energy that's energy moving through the chakra that belief system.

Yeah, yeah, definitely. 

Flowing energy.

Yeah and like everyone has their own auric field. Everyone has like the, like for example, if I walk into a room, someone's angry, I could definitely tell. I don't need my eyes or kind of, kind of any sort of outward thing to confirm that. It's like when I'm sitting in a room, I can tell like you're fine. You're comfortable. You're open whereas another person. For example, actually during that time period my mum told me I didn't know, I can't remember. But my mum told me this doctor he was, he was horrible. He was really mean about things. And he had just come up to me to try and speak to me. I was like, no, I'm not speaking to you. I'm not speaking to you or so it's that kind of that whole vibe thing. 

Feeling. That's how you interact in the world [overlap] that strong sense for you. 

Definitely. Yeah, definitely. It's like keeping those [inhales] that, that intuition open and keeping that constant open mind that constant like I don't know whether, it's kind of like, not instinct, but it's like being able to just, just feel everything, making sure there's no blockages in, in that kind of field, that kind of test and feel where you're just constantly looking out into the world. So I just constantly make sure I'm just free of any kind of prejudice or free of any judgement. Free of, free of any like things like would just pull me down and that don't help me in life, 'cause it's just you can put your time into anything, any sort of emotion you can be constantly angry, constantly sad. I was just like, I just don't have time for that. So, it's the whole numb thing I was talking about before where I, I didn't really have any emotion. I was either happy or angry kind of thing. It's just like keeping your space in the right space and you don't fall into silly things, because it's easy to be angry or overcome by many things that are going on in the world. But if you take care of yourself, then you can take care of anything else that comes within, within you and without of you. So whether it's people or situations or circumstances, you can just feel it as it comes and not be stressed of the future or the past of it. 
 

For Andrew X mindfulness is “living in the moment” and sometimes it can mean letting his mind just “wander”.

View full profile
Age at interview: 24
Sex: Male
Age at diagnosis: 14
SHOW TEXT VERSION
PRINT TRANSCRIPT
I'm not gonna try and preach mindfulness, because there's a whole, there's a whole sort of area. But for me, what mindfulness is to put it simply is being very living in the moment. So I've got anxieties further down the line, you know, making sure that I bring that back to myself. What's happening now for you, Andrew. Let's put those anxieties into perspective. You know, what's so it's really like really just thinking about these things that are coming up, you know. I'm feeling really sad at the moment. You know, it's okay to have a cry. And it's okay to eat that tub of ice cream, you know, and tomorrow you are gonna get up and you're gonna, you know, you are gonna do your stuff, because life keeps on going. So, its just, for me that's what mindfulness is. It's, it's very much living the present moment and not, trying your best not to let those past anxieties or future anxieties get on top of you. And there's whole sorts of techniques and things that people can use and there's a whole sort of, but that's what it means to me. And I sort of have to, to have a talk to myself. I talk to myself a lot, I don't care [laughs]. 'Cause it's really important to try and get that out. And also, daydreaming. I wholly recommend daydreaming, right [laughs].

It sounds strange. But just having some time built into your day where you are just sitting there and thinking. Just sitting there and letting your mind wander. It really helps with my sleep. Just like, you know, half an hour or an hour just sitting there like, you know, I could really do with a pizza right now or I could, you know, I really fancy bowling or what would it be like if I was prime minister or you know, should I do this project. Just letting your mind roll in a calm, nice relaxed way of just we don't do that enough. We don't allow our minds—on our mobile phones and we've got headphones in. We are reading. We are thinking about what we are gonna. Sometimes we need to take a step back and just go, yeah, you know, let my mind go for a little walk here. 
Often people we spoke to were told about mindfulness by therapists or while they were in hospital and not everyone had found it helpful at the time.
 

When it was first suggested to her in hospital Becky thought mindfulness was “a load of nonsense”, but now she uses it regularly and it “definitely helps” with her “wandering” thoughts.

View full profile
Age at interview: 24
Sex: Female
Age at diagnosis: 20
SHOW TEXT VERSION
PRINT TRANSCRIPT
I've done a lot with like mindfulness and things like that. And, that definitely helps me. It sort of pulls it back to where I am now, like I said, I get through sort of ten minutes at a time and that's really helpful to use mindfulness, because I can just be there, in the moment and I'll walk round shopping centres and things. Sometimes I get upset when I see various things that you can't always control and just being able to pull it back and be in that moment. 

That sounds really helpful.

It doesn't always work, but I'm getting there with practise. That is the most helpful thing that I've learned in the experience. 

So when you say being in the moment, can you describe that a bit more to people?

I suppose when you more start wandering to all those thoughts, you do not want to. You've gotta learn to accept that that thought is there [crackling on mic intermittently], because you can't always push them away, because I don't think that's necessarily helpful all the time. Just being able to think, I'm sitting here. This is what I can see. This is what I can smell and this is what I can read on my computer or just anything I'm doing at the time or a good example of when I, when I was in hospital when they were trying to explain this to me is when you're sort of in a supermarket and there is a child screaming and you can feel yourself getting flustered and it's hard, and it's just a case of remembering actually, I'm here, I'm standing here. This is what I can see. And I don't have to concentrate on the screaming. I can just recognise that it's there and carry on with what I'm doing. Nothing that you're seeing or thinking or actually going through can control that moment if you don't want it to.

How does that feel differently? Does it make you feel differently in relation to your thoughts or--?

It feels like it takes a big weight off, sometimes. When you're sat there and there's a million and one things going through your head and you're worrying about this and things it's just nice to think, actually, there's nothing I can do about that in this moment. So I'm just gonna put it to one side until I've either got the energy or the resources to think about it and I'm just gonna do what I'm doing now. So, I suppose if you are at work and you're thinking about all those bills I've gotta pay later like you physically can't do anything about it now to find a way or some sort of time to think about it later and deal with it that way and to be honest, most of the time you find that it's not even that much of a worry [crackle on mic intermittently] any more. It's just a case of, I'm doing this now. I'll think about that again later. And most of the time, most of the time when you actually get back to that thought, it's not as bad as you thought, which is, it's really good to. Especially like when you're lying in bed, at night and that's most people struggle I think when you can't sleep and things and you think, I need to say this to this person tomorrow and okay, well, deal with it tomorrow, because there's nothing you can do now.

Thank you. That's really helpful. And just so that was something that they sort of ran through with you when you were in hospital. Was that the most, the last time you were in in 2014?

It's the first time, but at the time I thought it was a load of nonsense and it was up there with the silly things they suggested like, when you're having the worst day of your life and you don't wanna live any more and they suggest going for a walk or something and you think, why on earth are you saying that to me? I couldn't see how it would work. I thought they were just saying things they weren't listening to me or they weren't understanding. But now I've got an understanding of it myself and I can sort of relate it to myself and apply it in everyday—I think it really is the best thing. 

And did you sort of come across it again and then think, oh yeah, that's what they told me in the hospital and it triggered.

It's more of a case of I've picked it up by accident. I didn't even realise I was doing it and it's only recently, I thought, oh, this is what they were talking about.

That's amazing. Just naturally doing it and then you realised that was the label for what it was that was helping you. 

Yeah, yeah, I think it is sort of a lot of people talk about mindfulness with all the colouring books and things. And it is a case of just bringing you back to where you are with the moment. And, I suppose, they explained it in such this big way and it's gonna change your life and I thought, don't be ridiculous. But it, it really can. And it, it doesn't have to be a big thing. You do it in day to day life without even realising you're doing it. 
 

Tariq thinks meditation is a “joke”, and very “ineffective”. He’s tried it but found it difficult to sit even for thirty seconds.

View full profile
Age at interview: 21
Sex: Male
Age at diagnosis: 18
SHOW TEXT VERSION
PRINT TRANSCRIPT
Some of the things that they tell me as in the crisis team told me breathe in and out, meditation, all these million and one things, none, nothing helps. Meditation doesn’t help, meditation only helps people that, I don’t think it helps anyone, I just think that people say it helps them but it doesn’t because especially like in this, in this sort of developed modernised world where people are constantly in and out and people are constantly working and the world is going at such a fast pace there is no time for meditation, people that meditate are either lying or they are so, they are feeling this, you know, I don’t know this sort of karma, whatever you call it, I don’t, honestly I just think it’s just all, I, I don’t think any of it is true because I’ve actually tried it, I’ve actually tried to sit there for three hours but I can’t even sit there for thirty seconds I just think right this is a joke [laughs]. I find every technique very ineffective so yeah.
But those who did use it regularly found it very effective for wellbeing and for managing their psychotic experiences. Sameeha said that meditation and mindfulness could help to get rid of “crazy” or “buzzy thoughts”. Andrew X uses meditation and will repeat a word over and over (like a mantra) and this helps manage the voices he hears.
 

Joe’s voices make him feel “blasts of emotion”. He uses mindfulness and meditation to make his brain “calm” so that the voices become calmer.

View full profile
Age at interview: 23
Sex: Male
Age at diagnosis: 21
SHOW TEXT VERSION
PRINT TRANSCRIPT
Almost now I feel that if I get hallucinations and voices, and they say - and they're trying to warn me of stuff, and I just go 'nah, I'm ignoring you, go away', that's probably not going to be that productive either, because they'll get angrier and then I'll get worse stuff. Yeah.

So in terms of sort of managing it day to day now, and drawing on those things that you've learned –

I don't ever get them less frequently. Throughout the whole process, I've never got voices less frequently than I used to. But it depends what they do as to how much it affects my life. And nowadays it might just be - I got, I got - some of them - Well, all of them would sometimes communicate. Not even with words, just with sort of making me feel blasts of emotion. Like seeing, I don’t know, a person walk past the window, and I just got tremendously angry all of a sudden. Because that voice had access to that bit of my brain that could make me feel furious. But nowadays I might get a very brief flash of understanding and emotion but I don't really get that any more. I think because I am calmer about it in general, and they are parts of my brain which is calmer, they themselves are less stressed about - yeah. Well, you say - They, they perceive danger on a sort of heightened scale. So my voices, if they see something that is 2 out of 10 dangerous, would say 6 out of 10 dangerous. If they see something that's 4 out of 10 dangerous, they'd see a 10. But if I'm like a minus 2 anyway, they'd probably only see it as a 2 and it wouldn't be a problem.

So, how do you get your brain to minus 2? [Laugh].

Practice [laugh]. 

Yeah.

Honestly, just - I do a lot of mindfulness and meditation stuff. And actively try and make myself not worry. I think one of the things I've discovered is you, you can't change things. I - Because my job is quite stressful and awful sometimes, but the only way I'm going to ever cope in that job is at four o'clock when I leave, just leave it behind.

Because you can't – If you, if you hold all of the stress you could have at one point with you at any one time, it'll burn you up. You've got to sort of compartmentalise and get it to be - I can deal with it. 
Religion and spirituality
 
For a few people religion or having a faith was important. Sameeha said, “My faith is something that definitely keeps me strong and hopeful in life”.
 

Ruby has received a lot of practical help from the Church. The people there were supportive, welcoming and understanding when she was unwell and even visited her in hospital.

View full profile
Age at interview: 22
Sex: Female
Age at diagnosis: 19
SHOW TEXT VERSION
PRINT TRANSCRIPT
My boss, at the time, he well he was my area coordinator. He is the pastor of a different church. And he found me somewhere to live with somebody who works with the homeless that went to the church that he runs and so I moved there and the people there were so welcoming, so understanding. I mean, it wasn't, I went from a church of about 400 to a church of about 20 [laughs]. So it was a big difference. But the, the people there were all, they all had something. They all had an understanding to some level whether it be learning disabilities. I mean, half, half of the people there couldn't read or write. People with physical disabilities, mental health problems. But everyone was, yeah, just so welcoming and they really really supported me. Visited me in hospital. Yeah, just continued to support me. And they still do. Yeah. They sort of became my family in a way, because I'd lost my family. 
 

Having psychosis has made Luke challenge this thoughts about religion.

View full profile
Age at interview: 21
Sex: Male
Age at diagnosis: 19
SHOW TEXT VERSION
PRINT TRANSCRIPT
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.
donate
Previous Page
Next Page