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’st really affect her any more as long as she manages her stress.

Age at interview 19

Gender Female

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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.

Age at interview 24

Gender Male

Age at diagnosis 14

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Green Lettuce tells people who are hearing voices to ignore them, get a ‘proper routine’ going,…

Age at interview 25

Gender Male

Age at diagnosis 20

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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.

Age at interview 24

Gender Male

Age at diagnosis 14

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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.

Age at interview 22

Gender Male

Age at diagnosis 21

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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.

Age at interview 24

Gender Female

Age at diagnosis 20

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Luke accepts that when you’sre in a bad place you can’st achieve much. So when he has good days he likes to recognise what he’s achieved.

Age at interview 21

Gender Male

Age at diagnosis 19

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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.

Gender Female

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

Age at interview 23

Gender Male

Age at diagnosis 21

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

Age at interview 22

Gender Female

Age at diagnosis 21

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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.

Age at interview 21

Gender Male

Age at diagnosis 19

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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.

Gender Female

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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.

Age at interview 24

Gender Male

Age at diagnosis 21

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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’s.

Age at interview 19

Gender Female

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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’s.

Age at interview 24

Gender Male

Age at diagnosis 21

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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.

Age at interview 22

Gender Female

Age at diagnosis 21

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

Age at interview 24

Gender Male

Age at diagnosis 14

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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.

Age at interview 24

Gender Female

Age at diagnosis 20

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

Age at interview 21

Gender Male

Age at diagnosis 18

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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.

Age at interview 23

Gender Male

Age at diagnosis 21

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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.

Age at interview 22

Gender Female

Age at diagnosis 19

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Having psychosis has made Luke challenge this thoughts about religion.

Age at interview 21

Gender Male

Age at diagnosis 19

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