Ceridwen - Interview 01

Age at interview: 27

Age at diagnosis: 20

Brief Outline:

In 2001 Ceridwen was diagnosed with schizophrenia. Having previously being sectioned and having spent time in an in-patient hospital, Ceridwen now lives with her brother and hopes soon to live independently with support from her family. Ceridwen does volunteer work and attends college.

Background:

Ceridwen is unemployed/disabled, single, and hoping soon to live independently. Ethnic background/nationality' White British.

More about me...

Ceridwen started having symptoms when she was 12 and had a full breakdown when she was 13. She heard persecutory voices and tried to commit suicide twice in her teens. She has been blind since birth and was badly bullied at the blind school that she attended. After this, she went to a mainstream school where she had a better experience. Her mother had her exorcised at the age of 14 as she thought she was possessed; she first saw an educational psychologist at the age of 15, who she thought at the time didn’t make any sense. When she first heard voices she thought there were nasty people in the house and didn’t understand why she couldn’t find them. Her voices take the form of four men, whom she doesn’t know, and who are horrible to her. At first, Ceridwen didn’t talk to anybody about her voices and had a tendency to lash out at people who she thought were going to hurt her. She used to set fires when she was young as it gave her a sense of control. Despite this, Ceridwen performed well in her ‘A’ levels and went to university. In her second year, someone she knew found her wandering down the road in her nightdress. He escorted her to hospital where she was sectioned.

During her time in hospital she was given ECT, which she thought was barbaric, and her drugs were changed every week. She remembers being scared in hospital, as she thought there were a lot of people who were really ill, paranoid and angry. She described the ward as dirty and unfriendly; however she made two friends in this unit. Since this first admission she has been admitted to another in-patient unit, which was clean, and she found the nurses were well trained. After trying various medications she was finally given Clozapine, which controlled her symptoms, but she wasn’t warned this might lead to dramatic weight gain. The drugs, combined with the lack of exercise in an in-patient unit, meant her weight went up to 17 stone during this time. After a period in an in-patient unit, Ceridwen saw a GP with whom she had a good relationship. However, her community psychiatry nurse was unreliable and would sometimes not contact her for weeks. Currently she is on Clozapine and Aripiprazole and has been stable for 9 months. She says Clozapine can make her dribble and she now has to be careful about her weight. Ceridwen also takes Gabapentin for pain which, in combination with the Clozapine, can make her drowsy.

Since moving to another area, she has had a key worker who taught her to swim; this helped her manage her weight and improve her confidence. Currently she has a consultant at a local hospital with whom she has a good relationship. Her brother now stays with Ceridwen on a temporary basis, and she has had good support from her step-dad since her mother died when Ceridwen was in her early 20s.

Her step-dad encouraged her to go to a college where she has learnt to do crafts and she socialises with the other people. She has been attending this college for nearly seven years. Ceridwen has also done a cookery course that she enjoyed greatly. Currently, she is supposed to be receiving psychological counselling to talk about painful childhood experiences, but hasn’t received any despite asking for this. At first she fought the diagnosis of schizophrenia, but now finds that what she reads about ‘disorganised schizophrenia’ fits exactly what she experienced. Since the time of interview, Ceridwen has been taken off Clozapine, because her white blood cell count was too low and she suffered a severe chest infection.
 

Ceridwen was told that if she had a baby it would be taken from her, and that she was no longer allowed to work with children or the elderly.

I was told that if I had a baby they’d be taken off me straight away. I decided that contraceptive implant was the best way to go.

 

And when were you told that?

 

About a year ago. I had no intention of having a baby, but they said, “If you do, we’ll take we’ll take it off you straight away.” Oh fine [small laugh].

 

What was your reaction to that?

 

I was absolutely disgusted. I’m not allowed to work with children because of my illness, but I used to, before I was diagnosed, I worked at an after school nursery for four years, voluntarily. I would not hurt a hair on a child’s head. But because I’m schizophrenic I can’t work with children. I’m not really meant to work with the elderly, but they kind of turned a blind eye to that.

 

You know, places won’t accept you because you’re danger to others. So I can’t prove that I’m not. I know I’m not. But can I prove it? No you can’t prove it. Each, it makes me angry. Because the word schizophrenia, people hear it and they think “psycho killer”. And the news doesn’t help. Particular, I mean I have a friend who’s a paranoid schizophrenic, and she gets it in the neck, because it’s always a paranoid schizophrenic who’s killed a policeman. A paranoid schizophrenic’s killed someone. And she says, “I’m not a murderer, I just have an illness, you know.” 

Ceridwen hears the voices of four men who are abusive, threaten her and grind her down.

The voices were telling me how worthless I was and how nobody cared, and how pointless my existence was, and that I would be better off not on this earth. And, I thought, well, you know, nobody’s listening to me so may be the voices are right. And then the depression would kick in and I’d think, well there’s nothing worth living for so I’d try.

 

I didn’t want to die. I just wanted to be rid of the voices. I mean I heard the voices in my sleep. I’ve had no respite for nearly 15 years of voices. And that’s so wearing. That just grinds you down. And they are horrible. Some people’s voices are mildly derogatory, mine are abusive and threatening. There are four men. I don’t know who they are. I just know they are my voices, and they are just vile.

 

Ceridwen was persuaded by her step-dad to go to college and improve her skills. At first she was shy, but now she has friends, has done craft work and has been on a cooking course.

And then [name] my step Dad who is brilliant. He’s a cabinet maker, and an art teacher, he bought a bunch of craft magazines and found [name] College and said, “You’ve got to get out of this house, you can’t stay here. You’ve got to, you’ll end up killing yourself, because you’re going to get so ill and so depressed, and you’re on your own.” Because he was working [my brother] was working. So he sent me to [name of college] once a week and they have been so supportive. They’re mostly elderly ladies. I’m the youngest except for [name] and [name] who have learning difficulties. I’m the youngest by about 30 years. But they have been so kind. 

 

Because when I first went, I had my head down like that. I wouldn’t talk. I didn’t want to speak. I didn’t want to do anything. [name], well as I say my transport manager is also a good friend. He said, “When you first came, I would talk for half an hour to an hour and you wouldn’t say a word.” I would just grunt occasionally if that, and I had my head down. I didn’t want to be part of the group, and I learned to do crafts. And over the years, I’ve got better and better, with their support and their kindness, to the point where I am now that I’m… I’m nervous day after today, I know they’re not the cause of how I am now, but they’ve helped. And with my Mum dying, they’ve been great, and things like remembering it’s my birthday, you know. A lot of people wouldn’t bother with that. But they do. They made me a cake one year, I’d never had a birthday cake before. And it’s just a wonderful environment. 

 

Yes, you do craft work, but you get to talk to people and meet people and there are about thirty people there.

 

And how long have you been going to this group?

 

Nearly seven years. I start… Yes, I went about three months after my Mum died, so it will be seven years in June. Near about around June. I’ve made some very good friends there, who’ve been…. 

I also did a basic cookery course at the Blind Centre in [place name]. And I was talking to [name] who’s a friend. I said, “These amazing talking scales, they’re wonderful, but they’re about forty quid.” And they did a whip round for me at college. And paid me for my talking scales. Though I didn’t ask them to. They just did. 

Ceridwen's grandfather sexually abused her and she has only recently realised how serious this was.

I’m supposed to be having psychological counselling at the moment, but it’s not happening. Because I was abused when I was a kid by my grandfather, severely. And I’m supposed to be having counselling for that, but they don’t seem to care enough. I’m almost at the point of giving up on them and finding someone else. The psychology at the hospital is, there’s not, there’s no regular appointments, no apparent continuity of care. I, I don’t need that. I’m going on the 10th December I think I’m going to say, “Thanks but no thanks. I’ll find someone who’s regular and reliable”. Because I don’t want to be messed about, you know, if you’re going to talk about something so horrible at least give me some continuity of care.” 

 

And have you found anybody else you can talk to ….?

 

Not as yet, but I’m looking at it, on the internet, I’m looking for people, because I do need to talk about it. But I need to talk about it with someone I can trust to talk about it. Does that make sense?

 

Yeah, absolutely.  And have you always wanted to find somebody to talk about it or is this recent…?

 

No, I bottled it up for a very long time. And it recently hit me, just how bad what he did was. Because he told me he loved me. And I believed that, and I associated love with pain. And then I, over the last three or four years, well he may have loved me, but it was a twisted form of love. It’s not right, it’s not normal. And that’s not okay, and you need to talk through that and make sure that you know that someone loving you does not involve what he did to me. And I do find, I find relationships very, very difficult. I had a boyfriend at Uni, and he just, I couldn’t cope. Because I couldn’t fathom a normal relationship in my head, you know, and I need to [3 sec pause] to work through that. I know that what my granddad did wasn’t normal, but sometimes in your head you think, well he did love me. Do you know what I mean?

 

Ceridwen thought that the Home Treatment team she saw was 'useless' as she wasn't safe to be at home.

I was ill for about seven or eight months. I wish I’d been in hospital, but I wasn’t. I was on home treatment. Which made it drag out.

 

Tell me about that time?

 

Oh. God. Useless people. Useless, useless people. Just messing around with my meds every week. Changing them and all that. Give them time to work. And I was psychotic. I should have been in hospital, because I wasn’t safe to be at home. I put my arm on a hot plate. I, as I say I went out with the carving knife to kill my next door neighbour. I thought something stopped. I don’t know, my conscience. I don’t know. I don’t care. It stopped me. And I went back inside, and no I’m not going to [name of neighbour], whether you say so or not. I was paranoid beyond belief. The voice was telling me to cut off [cat’s name]’s tail, and I thought I’ve got to do it, but I don’t want to do it. Because I love him. And again something stopped me, probably my conscience. And I never did it. But they were saying, “Cut his tail off. Or your brother’ll die. If you don’t cut [cat’s name]’s tail off.” “I don’t want to cut [cat’s name]’s tail off. I love[cat’s name].” And I was really ill. And home treatment, actually, although some of them were kind, were generally absolutely useless. And I never want to be on home treatment again. Because they didn’t help. They would tell you to take a couple of pills and go to bed. Like that’s going to help. And they are all generally nice, but though I don’t like being in hospital, I think it’s the best place for you when you’re ill. Yes, it’s safer.

Ceridwen saw an educational psychologist and was given antidepressants by her GP.

And then when I was 15, I saw an educational psychologist, who I thought at the time was a complete idiot. But some of what he said made a lot of sense. And he, he saw in me that there was something horribly wrong. But he wouldn’t, for some reason didn’t refer me to psychiatric treatment. I wasn’t, you know. I was put on antidepressants by my GP. And I do suffer from depression as well as schizophrenia. And it can be quite severe. I mean I take clomipramine which works wonders. But at the time I was on Prozac and Seroxat, and Cipramil, and things that just didn’t work.

 

Do you know what types of doses you were on?

 

High doses [laughs] very high. And they would help with the depression for a bit, but the schizophrenia made the depression worse, because I had, had nothing to turn to, because I was so paranoid.

 

Ceridwen found it hard getting an appointment for the sexual abuse she suffered as a child, so...

 

Have you had any experience of counselling or psychotherapy?

 

I’m supposed to be having psychological counselling at the moment, but it’s not happening. Because I was abused when I was a kid by my grandfather, severely. And I’m supposed to be having counselling for that, but they don’t seem to care enough. I’m almost at the point of giving up on them and finding someone else. The psychology at the hospital is, there’s not, there’s no regular appointments, no apparent continuity of care. I, I don’t need that. I’m going on the 10^th December I think I’m going to say, “Thanks but no thanks. I’ll find someone whose regular and reliable”. Because I don’t want to be messed about, you know, if you’re going to talk about something so horrible at least give me some continuity of care.”

 

And have you found anybody else you can talk to ….?

 

Not as yet, but I’m looking at it, on the internet, I’m looking for people, because I do need to talk about it. But I need to talk about it with someone I can trust to talk about it. Does that make sense?

 

Yes, absolutely. And have you always wanted to find somebody to talk about it or is this recent…?

 

No, I bottled it up for a very long time. And it recently hit me, just how bad what he did was. Because he told me he loved me. And I believed that, and I associated love with pain. And then I, over the last three or four years, well he may have loved me, but it was a twisted form of love. It’s not right, it’s not normal. And that’s not okay, and you need to talk through that and make sure that you know that someone loving you does not involve what he did to me.

 

 

Ceridwen say that it is important to have a named nurse when in hospital so that you can talk to someone.

In hospital... there’s just, well I was, recently, the last time I was in I had a named nurse. I’d never had one of those before. And I think it’s so important to have a named nurse, who you can go to, and if she’s not on shift, you can talk to someone else, but if she’s on shift, she’s your nurse to listen to you. And I think that is brilliant. I don’t know if that’s in every hospital. If it’s not it should be.

Because when I was at the [first hospital name], if anyone did bother to listen to me it wasn’t the same person twice. And the only one who really listened to me was one, a nurse who, an African nurse, I think her name was [name], and I was very, very upset. It was just after I had been diagnosed and I didn’t understand. Nobody told what schizophrenia was. I didn’t know, until I, about three years ago, that what I was experiencing was schizophrenia. Not just me being weird, and I was very upset. And she bought me a chocolate bar actually and talked to me, and it was nice.

Ceridwen find finances difficult, but receives Disability Living Allowance, Income Support and Direct Payments for her water bills.

And how do you do for money?

 

It’s not easy. I have DLA and income support. It’s not easy to live on that. But I do. And I set aside a little bit every week, so I can do my baking, because I love baking. I don’t have, as I say I don’t have enough to save anything. You know, I’d love to have savings, but it’s not going to happen on what I earn. But I live. You know, I’ve never, I’m not in debt. I’m not struggling. I just cope.

 

And has anybody helped you getting DLA?

 

Yes, various social workers. My new one has been very good about getting direct payment for my water, because I, I find it easier that way.

 

So do you have direct payments at the moment?

 

I have direct payments for water, and gas, electric and phone I pay myself. And I’m with [company name] which is really cheap. And I don’t use my phone much, so you know. Internet is only £10 a month. So I cope. I don’t have nice food. I don’t have posh things. But you don’t need them. You know, Tesco value diced beef, is no worse than anything else. You just need to stew it longer. You know. And I have a slow cooker, which I bought when I was having my last episode. The day nurses insisted I bought nice cookery equipment. And I hated them for it. But I’m glad they did. I know I didn’t want to be told what to do, but I’m glad they did. And, a slow cooker, well I make a couple of days meals in a slow cooker, you know, or a casseroles, and lasagnes and that.