This is the transcript of the Mindcast on psychosis.
Matt: Welcome to the Mindcast, ‘Exploring Psychosis’. My name’s Matt Wilkinson and with me today is Reka Krieg. Reka is a mother of one from South London. What does the term psychosis mean to you?
Reka: OK, to me personally, the term psychosis means losing touch with reality. It means seeing, feeling, believing, hearing things that are not in tune with what I call in, speech marks, ‘normal reality’ that ‘normal people’, in speech marks, can hear, see or feel.
Matt: How many episodes have you experienced?
Reka: I’ve experienced three episodes of psychosis.
Matt: What were the circumstances surrounding your first one?
Reka: The first episode lasted about, from beginning to end, three months. I’ve got bipolar type 1. It started. It left. I was normal again. I went up again. I came down again. I went up again. It was like a wave. It started with lack of sleep, going into hypomania, feeling excited, feeling confident, feeling glad about myself, thinking I could do anything. Then, going on to full-blown mania, thinking I could change the world, I’m special, spiritual knowledge is coming to me. Having all these congruous beliefs and then completely tipping into what ‘normal people’, in speech marks, would call crazy.
Matt: And how would you refer to it as?
Reka: I like to call it alternative reality. That might sound a bit crazy, but to me it is an alternative reality, because in that moment, it’s true. You believe it. To you, it’s true at that moment.
Matt: So, describe what exactly was happening, this first time, when you’ve gone into your alternative reality. What was alternative about it? What was happening to you?
Reka: OK. My psychosis has got lots of different features. I experience so many different aspects of it. One of them was that I thought I could write a book, which wasn’t really a book, but just me writing lots of silly things. And believing I could hear the divine. I actually felt the divine was speaking through me, and I was giving messages to the world about how the divine loves everyone, and how everything was going to be good again. And I believed at that moment that I could change the world. And I had perceptional hallucinations as well. I thought that certain letters of my writing kind of came towards me. I could see them flying towards me, and I thought that these are a special message to make sure that I give enough emphasis to this particular subject.
Matt: You were having a vision, in that instance.
Matt: So you were looking at a screen, and you actually felt like the words were coming off the screen? Three-dimensionally coming towards you, like you would see at a cinema with 3D glasses on or something?
Reka: Yes, 3D glasses, absolutely.
Matt: Was there a point when you thought to yourself at all, ‘This isn’t right. I can’t possibly be seeing this’, or did it seem totally normal?
Reka: Throughout my first psychosis, I did have an element of insight. I knew that I was high. I knew that what I was going through was, or could be, psychotic. It was crazy, or what could be termed crazy. But I enjoyed it so much, and it felt real, so I made a conscious decision to believe in it. I had enough insight that there was a part of me that was actually saying, ‘Hold on a minute, maybe this is not right’. But I ignored that part and just went for the joy of it. And there were elements in that psychosis when I really did lose complete touch with reality. I genuinely believed things to be true that I can now see are not true, but for a lot of the time I did have a little bit of insight. But I decided to ignore the insight and carry on with what I believed was right and felt good.
Matt: So you said the first episode took three months, correct?
Matt: So this instance of the words you typed on the screen coming out at you, was that something that lasted for three months, or was that just one occasion?
Reka: No, that was a one-off incident. But in these three months, I had many different experiences of psychosis. Also, losing touch with reality. I saw a picture of myself on Facebook, and out of the picture, I saw a Buddha suddenly coming out of it. Instead of me, there was a Buddha. So that was one experience of psychosis I had. Another one was that I was really frightened of people being able to read my mind and I had my own theories about it. I believed that I tapped into a collective consciousness, and that if you are in this heightened state of awareness, because you’re tapping into it, other people can access your information too. And I had these kind of paranoid feelings. They were scary. There were other incidents, when I thought I was God, which is now quite embarrassing, but it felt beautiful at the time. It felt beautiful. I just felt at peace. I thought I could change and heal everyone.
Matt: Were you having a usual lifestyle, in that three month period, as well as having these delusions? Or did the delusions take over and that was the only thing that dominated your life?
Reka: I had no normal lifestyle at all. The delusions completely took over. I didn’t sleep. I didn’t want to sleep. I thought I didn’t need sleep. I was enjoying writing, being on the internet, talking, texting and especially writing. I was enjoying writing. I was just writing like crazy. I was on YouTube looking at videos and I saw certain messages to myself. Everything suddenly had meaning. I was on Facebook and I was connecting with other people, who actually believed my delusions, who were feeding into my delusions.
Matt: At what time did all this come to a head? At what time did it change? Did you think, ‘I need to get some help for this’, or was it a friend or family member that helped you at that point?
Reka: I felt that I was going high before the psychosis happened. I enjoyed myself. I just went with the feeling, and within one week, it kind of blew out of control. I was really manic and friends and family were really concerned. I was living in Germany at the time and one afternoon I sent off this crazy writing to everyone on my email list and people became aware that I was unwell. So that evening I heard a knock at the door. I opened the door and my best friend, her boyfriend and my mum’s best friend were standing there in front of the door and they were saying, ‘You have to come with us now’. And they made me go with them. I had no choice. I went with them and the next day they admitted me into a psychiatric hospital. And that itself was petrifying because I had a delusion that the psychiatric services were after me, that they want to lock me up because I had access to knowledge that they didn’t want to come out. So they were taking me in and would keep me in for ever. It was a conspiracy. I was petrified. I was screaming. I was crying. And the next day, this was in Germany, I discharged myself. And they let me go, and I immediately just took myself and ran out, and I went back to my mum’s friend. And because I discharged myself, I thought, ‘OK, there’s not much they can do now anymore’, and they kind of let me get on with it. But somehow, really quickly, I went up again. I went really high, again into psychotic beliefs. I think I was a little bit irritable as well and my family was very concerned. They called the home treatment team, and they came to assess me at home. And they were saying I had to come into hospital. So I went into hospital with them, and at that moment I really believed that I was no danger to myself. I was no danger to anyone else. I was 100 percent normal. I don’t think I was being psychotic. And the consultant came round, with a social worker, and he asked me questions like if you believe … like, ‘Do you think you are an angel?’ and I said, ‘Yes I believe all of us are angels, and so are you, we are all angels.’ And these are my normal beliefs. And because I made comments like this, they thought I needed to be sectioned. So they sectioned me. And I was just, like, ‘OK, I don’t think that was necessary.’ I felt that I was fully there, maybe a little bit hypomanic, but I didn’t feel I was psychotic or needed sectioning.
Matt: You talked about your delusions and your visions being spiritually based and you said for example you saw a Buddha in your Facebook photo. Are you a religious person?
Reka: I’m very spiritual, yes.
Matt: Do you think that’s why you saw those visions. Because of your background in that?
Reka: Well actually, I wasn’t spiritual before my psychosis. My psychosis made me spiritual. I wasn’t spiritual before. I did believe in psychics, but I didn’t grow up with any religion. I was completely anti-religion, completely. I knew I believed in something. I believed in love, that everyone should treat their neighbour right, everyone should be a good human being, being kind and generous and loving. But that was as far as my religious belief went. I didn’t believe in one God. But having this experience definitely made me very, very spiritual. So I’m actually very grateful to my psychosis. To me, my first psychosis was a spiritual emergency. To me. it wasn’t necessarily … well of course from the psychiatric point of view it was psychosis, but to me it was a spiritual emergency.
Matt: A spiritual awakening?
Reka: Yes, a spiritual awakening. I’m objective enough to look at it and say it was psychosis, but what I really subjectively believe is that it was a spiritual awakening.
Matt: OK. So after the three months, where were you? At home? At the hospital?
Reka: After the three months, I was in hospital. My beliefs were definitely back to normal, but my beliefs are anyway quite crazy to an outsider. But they discharged me, and what always happens to me, I find, is that they keep me in hospital for too long. If I’m happy and psychotic, I feel good about myself. But once they start detaining you, and I feel in a way that they are trying to destroy my beliefs, I always come out feeling really low. So I went into a really low period and it took me again, a month, two months to rebuild my life. And what I and I’m sure many other people who have gone through psychosis or mania have to deal with is the embarrassment and shame they have caused to themselves. And other people obviously knowing about it. So the shame and the embarrassment are also really humiliating, very intense.
Matt: So how did that episode compare to subsequent episodes?
Reka: OK, the subsequent episodes were not as pleasant any more. The second one again started off with intense engagement in spiritual activities: loads of meditation, loads of chanting. And the second psychosis, what I can remember, where I completely lost insight, was I was at my Mum’s house and I quite literally felt my brain being shaken. It was as if my brain just went upside down in my head. I fell on the floor onto the stairs and I was holding on to the staircase, and I was petrified. I didn’t know if I had died, if I was still alive, or what happened to me. It was a physical sensation in my brain as if I went into a different state of consciousness. And then loads of bizarre things happened. I can’t remember all of them but I know that I believed I was dying. And what I can remember was that I thought I would never see my daughter again and I was screaming her name, calling her, screaming, screaming her name, genuinely believing that I would never see her. And that was quite painful, that was distressing. And then I went out onto the road with bare feet and I thought I was running through hell. My mum’s friend was there and she was trying to catch me, trying to come after me, and I thought she was a spirit, an evil spirit trying to keep me in this dimension. So I think when she caught me and held me, I thought she was trying to kill me or keep me there.
Matt: How does it feel, sitting here now, reflecting on those moments. Do they seem real? Do they seem like a dream?
Reka: Well, it feels like … I don’t know. I really find it difficult to explain. It feels like watching someone else, perceiving someone else. Yes, it’s devastating. Just knowing your mind can play such tricks on you, and can do these horrible things to you, and you think, ‘Oh my god, how can I ever rely on myself again?’. If my mind did this once, how do know that next time it won’t do something even more horrendous?’.
Matt: When you’re going through a moment like that, is there any bit of you that can remember previous psychotic experiences? Can that provide any reasoning of what you’re going through or is that out of the window?
Reka: No, it was really ... I call it a psychotic breakdown what I had that second time. I was so psychotic. There was no insight whatsoever. I was so out of it. There definitely was no possibility to have though about the past, about anything rational.
Matt: Are there certain triggers for each psychotic episode for you?
Reka: Rather than calling them triggers, I am aware of my early warning signs. I don’t think there are any triggers. But all the early warning signs are feeling really happy, feeling really good, feeling confident, exercising, an over-active interest in spirituality, seeing signs everywhere, feeling in tune with the universe, lack of sleep. These are the early warning signs, but I can’t think of triggers, as such.
Matt: What kind of treatments have you had for the episodes that you have undergone?
Reka: Well unfortunately with psychosis, the only treatment they do at that moment, because you are acute at that moment, is antipsychotics. They don’t really offer much more than antipsychotics.
Matt: Are they injections or are they tablets?
Reka: In hospital, they’re usually tablets.
Matt: What does it feel like when you’re on the medication? Are there any side effects?
Reka: When I was in hospital the first time, I was spitting many of them out, anyway. I didn’t take them. And as soon as I left hospital, I stopped taking them so I didn’t have any side effects. But as soon as I came out of the psychosis, I was a changed person. I wasn’t myself any more. I was depressed. I was withdrawn. I was zombified. And I had to carry on taking the medication. They put me on a CTO, a Community Treatment Order, which is legislation that psychiatrists can impose on you if you have been sectioned. They make you take medication. They last up to six months, and then they can review and extend them. I was on a Community Treatment Order for a year and I had to take antipsychotics. They gave me injections every two weeks and it was a most horrendous period of my life. I was unrecognisable from a few months ago. I was a size 16, so I was three stone heavier than I am now. I didn’t take any care of myself. I didn’t wear nice clothes, no make-up. My hair was in a mess. I didn’t enjoy communication. I didn’t enjoy talking to anyone. I couldn’t relate to anyone. I now go clubbing once a week. Back then I couldn’t even dance. If I would go out, all I could do was move stiffly. Every bit of exercise was too much. Just walking two minutes down the road was too much for me. It was the most horrendous, horrendous year of my life.
Matt: How long ago was this?
Reka: I went onto the Community Treatment Order in March 2009 and I think I came off it in 2010, in April.
Matt: Do you think it was necessary?
Reka: OK, I’m trying to look at it objectively. I can see from a psychiatrist’s point of view, that yes, it was necessary because I was a revolving door patient, in and out of hospital. I was what they like to call non-compliant, which I really don’t agree with, because I was always very open. I didn’t do anything secretively. I openly said I was going to stop taking the medication. Even in hospital, I admitted, ‘Actually, you know what? I haven’t been taking my medication’. So I can see why they thought it was necessary. But by the time I had my third psychosis, I saw how unwell I was because my third psychosis was really extreme. And I came to a point where I thought, ‘Well, actually, maybe I need to take medication’, and I would have been very happy to have taken medication on my own behalf. So I think it was a bit unnecessary. I don’t agree with their decision, but I can see where they were coming from. But what does make me very upset and angry is that everyone was really happy that I was apparently doing so well. Yes, I was out of hospital. I was quiet. I wasn’t manic. I wasn’t psychotic any more. Yeah, OK, I was out of hospital. I might have saved them money, but what about myself, my life, my family? My life was destroyed. It was in tatters. I had no hope. I couldn’t do anything. My quality of life was disabled. They didn’t see that and were trying to help me. They did try to help me. But they couldn’t pinpoint that it was maybe my medication, and adjusted my medication. That makes me very angry, not the CTO order as such, but the injections they put inside myself and the horrendous effects it had on me. And that no-one was able to say, ‘Oh actually, this is not her. This is not the way she’s supposed to be’. That makes me very angry.
Matt: Therefore, are you effectively saying that you prefer to not be on medication and to maybe have another psychotic episode? Would that improve your quality of life in that sense?
Reka: Since I’ve come off the injections, I am actually taking medication. I’m taking a mood stabiliser. I’m doing it out of free will. I’m doing it willingly, happily. But you’re right, if I had the choice between a psychotic episode and taking antipsychotic drugs, I’d rather have a psychotic episode than take drugs that zombify me. Any day.
Matt: Even if the psychotic episode is unpleasant, like your second and third ones?
Reka: You see, while I was going through the psychosis, I can’t even remember very much. I can’t really relate direct suffering or pain to it. Actually, you know, psychoses can be very exciting. So yes, I would choose a psychosis over medication that would zombify me. Mind you, if I was going through a psychosis where I was thinking the devil was after me and where horrible things crawling all over me, and I was seeing blood coming out of my body, which are really scary, I probably would choose the medication. I’m not too sure.
Matt: And how do you feel now?
Reka: I feel brilliant. My life is amazing. I have a wonderful quality of life. As soon as I came off those horrendous injections, slowly my life was improving, bit by bit, month by month. And I would say I’m absolutely back to my normal self. I’m happy. I’m excited. I have friends. I go to parties. I go on holidays. I’ve got a really nice family life. Yes, life is really, really good. Of course, I have my good days and my not so good days but the majority of the time, yeah, I’m really good.
Matt: Is it possible that the reason for your life being better now is because the CTO worked?
Reka: Definitely not. The CTO did not work. Everthing it did. It kept me quiet. It kept me zombified. It kept me out of hospital, fair enough, but that’s everything it did. It didn’t do any good to me whatsoever.
Matt: What would be your ideal treatment?
Reka: Well, I think the treatment I receive at the moment is quite ideal. I happily take my medication every morning. It works really well for me. It’s not an antipsychotic – it’s a mood stabiliser. And I like to believe that I’m a better self-manager now. Because in the past, I kind of enjoyed the excitement of psychosis. I would push my mind towards it. Realising now how devastating it is, especially the recovery period afterwards and the risk of taking antipsychotics again, there’s no way I ever want to become that unwell again. So what I do is, I self-manage. I see myself going up, high and happy. And if I feel I am going up too much, I do call my Care Coordinator. She makes an appointment with my psychiatrist and he prescribes me some antipsychotics PRN. And …
Matt: What does PRN mean?
Reka: I don’t know what it stands for, but it means you’re allowed to take the medication as and when needed.
Reka: So when I need it, when I feel I need it, I take it myself. And I self-manage like that.
Matt: Are you worried about experiencing psychosis again?
Reka: No. I’m not worried about it. At all.
Matt: Do you think a fourth episode is inevitable?
Reka: I believe I can stay alive without another psychosis. I believe I can manage it. I believe I know the early warning signs. And the only risk I can see is that the early warning signs are so much joy and so much fun, that I decide not to do anything about it. But having had such horrendous experiences in the past, I know at the right time I would put my foot down, and will say, ‘Actually, hands up. I need help. Please help me.’ You know, not go that far into it again.
Matt: Does it seem almost that what’s happening is, you’re getting such a huge positive feeling beforehand, that’s then balanced out by the negative afterwards. You’d ideally like to just have the positive not the negative.
Reka: Of course, yes. [laughter]
Matt: But going through the positive, you’re feeling that this is going to end in an unpleasant feeling, I need to deal with it now.
Reka: Yes, there have been incidences when I’ve felt, oh my god, this is going really crazy. And what I do is, I call my family members. There’s one particular family member that I really trust, and I tell him, ‘Actually, I’m having such a good time, I don’t want to do anything about it. But do me a favour, please look out for me. If you see me and things are going out of control, and I refuse to call for help, can please make sure you call for help on my behalf?’.
Matt: You’ve touched on it there. What do you want from your friends and family when you’re going through or might be about to enter a psychosis? How can they help you?
Reka: They are aware of my early warning signs and I want them to look out for me. But I don’t even have to tell them to look out for me. They will automatically get really worried, really concerned. They will call my Care Coordinator and will start making arrangements and communicate on my behalf. So it’s really for them to look out for me, and for them then to step in, and to say, ‘You need to see someone. You need to talk to someone. You need to take your medication now. You need to have some sleep. You are a little bit high now’. Of course, I don’t like it because at that moment I’m having so much fun. But I’m not worried about my family members not being able to look out for me. They will get concerned even before I get concerned.
Matt: Sure. What effect do you think your psychosis has on them?
Reka: Oh, I think really horrendous. I don’t think I’m maybe being empathetic enough with them. Because for me, when I talk about psychosis, for me it’s just … it’s quite fun and exciting. And I don’t think I’m empathetic enough to understand how horrendous it was for them. I think it’s had a huge impact. The worry, the distress, the inconvenience. They had to come and visit me every day for three months. Maybe even the embarrassment, the shame, the fear, the worry, to think I might not ever be able to get better again. And luckily, I can’t remember much about the third episode of psychosis but it was pretty intense. And for anyone who loves you to see you in that state, it must be really traumatic.
Matt: If someone listening just now has just had the experience of a psychotic episode themselves, what would you say to them, to reassure them about the future, for example?
Reka: OK. What I would like to tell them is that psychosis has a lot of stigma, even being diagnosed as a mental health issue, a huge stigma. It might feel like a bereavement. It probably feels really horrendous. You’re probably really scared, thinking your life is over, you can’t ever achieve anything. But I would say that there are so many people who have gone through mental health issues, even psychosis, who now lead a very happy and successful life. To understand there always is hope and you can always get better, I really am a big believer that there is hope for everyone, regardless of where we have come from, what we have gone through. My advice would also be to find out as much as you can about yourself, about your condition, so that you can self-manage. And instead of looking at cases of people not getting better, look at recovery stories of successful people who have recovered. And a successful person might even be someone who was so disabled by their mental health problem that they couldn’t go out for months and months. So even for a person, who’s now able to go to a group three times a week, that would be a success story. Look at recovery stories and become your own best psychiatrist. Because I believe only we can help ourselves, and we can help psychiatrists and mental health services to help us. But we are the first people to help ourselves.
Matt: You’ve proved you can deal with your psychosis and move on, haven’t you? It’s now part of what you do now as a job.
Reka: I’m working for a mental health trust. There’s a project called Co-Creating Health. I’m a self-management tutor for people with depression. We also have the first recovery college in the country and I’m a sessional peer trainer. We facilitate courses on mental health issues, assertiveness, introduction to recovery, mindfulness. So I’m doing that. I think it shows how you can move beyond mental illness and can really make something of yourself.
Matt: Reka, thank you for joining me.
Reka: Thank you, Matt, for having me.