Living with mental illness, part 4: Coping with a schizoaffective disorder

So, I had a psychotic breakdown in November 2012.
The voices in my head took control over me and demanded that I had to leave my flat because there was a demon in it and I wasn’t safe there any more.
I went to my downstairs neighbour. I think it was about 5 am on a Tuesday morning. I cried on her shoulder and told her I needed to go down to the ER. She kindly drove me down.

When I got there, I was so upset and scared I could hardly speak. When the nurse was going to register me, I had to give her my ID card, because I couldn’t speak and say my name.
I was quickly led to some nurses who gave me very strong sedatives. After a while I was able to relax a bit and tell them my problem. I told them about the voices, and that I had lost control over them, that they scared me and that they had scared me out of my flat. I begged them to commit me to a mental hospital.
They took me seriously, and that was a good feeling.
After having talked to me for a while, they sent me to Vinderen hospital with an ambulance. A small part of me was going: “I’m in an ambulance! I’ve never been in an ambulance before! Weee!”
The ambulance personnel had to support me going up the stairs to the hospital. That was some strong sedatives!

I was met by two therapists and a student. They took me to one of the common rooms for an interview. I was still scared and had still problems talking. I found that it was easier to talk in English than Norwegian for some weird reason. It was the student who interviewed me. I don’t really remember much of it. I remember that I said that the voices wanted me to harm my cats. I exaggerated, because I was afraid of not being taken seriously.
After I was interviewed, I was led to a room and given a bed and a pyjamas. I slept through the entire day and night.
I don’t remember much of the week I was at Vinderen. I was pretty heavily sedated most of the time, because I was so scared. When the sedatives worked, I remember sitting peacefully working on jigsaw puzzles. My mum came and visited me every day. She also looked after my cats. I remember I wrote down what the voices were saying to me. I thought I was hearing the gods, and that everything they said was important.
When my mum visited, I would sometimes get overwhelmed by the voices, so I had to go and sit in the quiet hallway and pull the hood of my jacket over my head to cocoon myself.

After a week, I was transferred to Vår Frues hospital. I stayed there for three and a half months. The first few weeks I was still very busy writing down what I heard. I filled three thick note books.
I did a lot of diagnostic interviews at Vår Frues. I also had therapy sessions, and then we had different types of group therapy. Music therapy, physical activity, art therapy, crafts therapy and group talk therapy. So, my days were kept busy. I couldn’t take part in the physical activity or the music therapy though, because loud noise made the voices more prominent. It was difficult in the evenings. For the first couple of months I couldn’t read, because the voices read with me, and they always read to a set rhythm, so it was very annoying. At least I had been able to go home with one of my friends one evening and fetch my knitting.

I was first put on the anti-psychotic medication Risperdal. It didn’t help. All it did was slow down my metabolism and make me hungry all the time, and it made my nose stuffed so it was a bit difficult to breathe. Then I was put on Zyprexa, That one didn’t help, either. It also messed with my metabolism and suppressed my ability to feel full after a meal. And it made my body swell with water. Those two meds made me gain 20 kilos (44 pounds) in 2 months. The third medication they put me on was Seroquel. That one didn’t help, either.

It surprises me that in all the therapy sessions I had with therapists, not one of them had any strategies for how to cope with hearing voices. I had to learn how to cope with them on my own.

After some weeks, the voices changed. They began to say that they were my Christian ancestors, and that they were angry with me for following Loki. They kept harassing me and tried to make me stop following Him. They tried to ruin my faith in Him. That was though. I cried a lot during those weeks. I had stopped writing down what the voices said, after they changed.
I told my therapists what I thought the voices were, first gods, then ancestors. I was diagnosed with schizophrenia. I took that very hard.

I began to notice that the voices went quiet for a little while when I participated in art therapy, and crafts therapy. So, I began to spend my evenings in the art therapy room. I put on a CD with some nice music, and would sit there and draw and paint for a couple of hours. That was how I first learned to control the voices.
After some weeks I was able to block them out so much that I could begin to read again.

After three and a half months they had to let me go. I wanted to stay longer, but that was the maximum you could stay there. I didn’t at all feel ready to be on my own, so my mum came and stayed with me for weeks. I had sedatives I could take in the evening, when I became overwhelmed by the voices, and very upset. The voices never shut up. They talked constantly and it was exhausting.
I found that reading, watching tv series on my laptop with headphones on, and playing computer games helped to block the voices out. But I got no mental rest. I had to have a constant mental focus to try and block the voices out. At least the voices had stopped saying they were my Christian ancestors. Now they were “just” being harassing and negative in general.

I had a contact person who followed me up after I was “released” from the hospital, she was a psychiatrist, and with her help we tried to add another medication called Zeldox, to the Seroquel. And that helped. That was in May 2013. The old, harassing voices disappeared, and for a couple of weeks it was almost silent. I only heard one voice, which kept repeating “paint me a rainbow”. Then after a couple of weeks, this new, single voice became more talkative. In the beginning, it sounded very childlike and endlessly inquisitive. It was exhausting. It never stopped asking questions about what I was doing, all the time. Then, it seemed to mature, and began talking to me. It claimed it was Loki, and for several months I believed it. We had many conversations about this and that.

During the autumn of 2013, I participated in a research project, where they did research on people with bipolar disorder and schizophrenia. I went to a lot of diagnostic interviews.
By then I had stopped believing that the voice was Loki.
I was re-diagnosed with having a schizoaffective disorder.

Since then, in 2014 and 2015, I have been working on blocking out the voice.
Now I hear it only say a sentence or two in the morning, and it’s quiet the rest of the time.
I spend my days watching my tv series, reading, chatting and writing.
Twice a week I go to a place called Cafe Svovel. They have painting classes on Tuesdays and ceramics classes on Thursdays. I love going there! I also meet other people who struggle with mental illness there. It’s a great place.
On Saturdays I try to meet up with friends and go for lunch.
I play table top roleplaying games with my friends twice a month.
Once or twice a month I have movie nights with my best friend, where we order take-out.
My mum comes and makes dinner for us four times a week. I usually do the dishes.
I have reduced Seroquel from 800 mg to 50 mg. In two months I’ve lost 8 kilos (17,6 pounds).

I don’t know when I will be able to go back to work. I got disability pension on March 2014. I still have to take each day as it comes. My energy levels still varies a lot.
I have been able to start meditating again, without hearing the voice when I don’t have an external mental focus.

It’s been a long and hard journey since November 2012, but I am much better than I was. I read a bit through my notebooks, after I was doing better. It was unsettling. It was filled with nonsense and very weird word associations. I couldn’t even recognise my own handwriting.
I have hope now, though, that some day I will be rid of the voice in my head for good.

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About Amber Drake

AKA Darkamber.
This entry was posted in Uncategorized and tagged , , . Bookmark the permalink.

17 Responses to Living with mental illness, part 4: Coping with a schizoaffective disorder

  1. ladyimbrium says:

    I sincerely hope for you and other who struggle with this, that one day we will understand it and be able to deal with it in ways that don’t hurt the people in question. ❤ to you.

    • Amber Drake says:

      I wish that the therapists were better at suggesting strategies for dealing with hearing voices. I had one contact person who was a psychiatric nurse, after I was released from the hospital, and she knew more about voice hearing than the therapists at the hospital. She made some useful suggestions, but mostly I had to learn to control the voices on my own.

  2. Christine says:

    That’s my official diagnosis; schizoeffective disorder, bipolar type.

    • Amber Drake says:

      Then we struggle with the same disorder.
      Do you hear voices, too?

      • Christine says:

        No. I have ceaseless random chatter in my head alot. Like having radios all tuned to different talk shows, etc. Most of the time I don’t notice or pay attention. And it’s random-not directed at me. I get auditory hallucinations when I’m manic or stressed. Like if the phone rings, for example: every sound I hear with the same pitch will make me ‘hear’ the phone ring. My problem is mania or stress induced paranoia or suspicions.

  3. Lis says:

    I wish I had something meaningful to write in response to what you’ve been through, but I don’t have enough common ground to understand the full extent of what you’ve experienced. I understand to some degree, because I have suspicions that I’m depressive and bipolar — for example, your comment, “My mood could change from hypomanic to depressed during the same day,” resonates with me. I’ve dealt with extreme mood swings like that for years, and I’ve also gone through episodes of depression and worthlessness where life loses all meaning and purpose. But past that, I haven’t gone through the kinds of experiences you’ve endured. You’ve been through more than your fair share, and you’ve made huge strides on working through it and overcoming it. I hope you recognize your own strength.

    I just wanted to wish you well and thank you for sharing what happened to you.

    • Amber Drake says:

      Have you ever got treatment for your problems? Remember, if you’re bipolar, then anti-depressants alone may make you cycle rapidly.

      Thank you for your kind words. 🙂

      • Lis says:

        You’re welcome! 🙂

        No, I haven’t gotten treatment. I just sometimes hurtle rapidly through the cycle all on my own. I’ve been encouraged by a couple of the spirits around me to talk to a doctor and see if medication would help, but I’ve been putting it off. First due to not having insurance, and now I’m just being chicken about it.

        I wish I could offer advice about the voices. I have particular problems, but it’s not that. It sounds like it would be maddening and exhausting to hear that all the time. It must be a relief that the voices aren’t quite so constant now! Do you hear them audibly and outside of yourself? Or inside your head, but with tone and definition to the voices?

        • Amber Drake says:

          In the beginning, when I heard several voices, I sometimes heard them audibly. That was scary, because I felt like I had no control. Later, the voices merged into a choir and I heard them inside my head. The single voice that appeared after I started taking Zeldox I only heard in my head. It’s a gender neutral voice, but it feels male. It doesn’t resemble any males I have known, though.
          It’s a great relief that I only hear the voice a little when I smoke my first cig and make my first cup of coffee. Then I watch a tv series episode or two, and the voice is mostly quiet for the rest of the day. This has enabled me to be able to begin writing again, as I need a quiet headspace for writing.

          • Lis says:

            That sounds like a definite relief. One voice that disappears after you start focusing on your day is much better than a constant choir of voices inside your head. I’m so sorry you’ve had to deal with that. 😦

            If I ever come across information that I think might help with getting rid of unwanted voices for good or for longer spans of time, I’ll make sure to share with you. Right now, I don’t have any helpful knowledge about it.

  4. Ly says:

    What a difficult journey this sounds like it has been and still is for you. I admire your strength and determination in working through, and not giving up.

    You’re a brave soul. Thanks for sharing your journey here.

  5. Woah! What a Story! Thanks for sharing, this is so important. What struck me the most is the support you received! Looks like you have a great family/friends/health system at your reach! I hear so many stories where people with illness are afraid to ask for help because they don’t know what is best for them any more, all of their thought patterns are indoctrinated with societal standards and other bull crap.

    You seem to have pulled yourself together right now, there is a visible, matter-of-factly control to your writing, not moody and whiny. You are not looking for sympathy, you are truly looking at sharing your experience to reach out to other, and I’m certain it will. It is so beautiful, the text and the journey.

    I’m curious about your conclusion reading the voice(s). Where do you think it comes from? Do you think it is something out of yourself (like a spirit “guide”)? Do you think it’s past lives fragments? If you feel theses questions are out of line, feel free to dismiss them 🙂

    Again, thanks for sharing.

    • Amber Drake says:

      I have been lucky in having a great support system both from the health system and from family and friends. I felt very lucky to be taken seriously when I asked for help and asked to be committed to a hospital. I was also lucky to have a support system for after care, after I was released from the mental hospital. I had a team of a psychiatric nurse and two psychiatrists, and my mother, and an aunt who knows a lot about rights in the system.
      Now I have one contact person who helps me with training to take public transport, something I have a phobia against. He also helps me with my social anxiety. I also have psychiatrist who I have been to since 2005. He has helped me a lot.

      Yes, that is what I try to do exactly, share my experience. The more mental illness is openly talked about, the better. There shouldn’t be a social stigma about having a mental illness. I have been able to be open about it with my friends and they have accepted it.
      I hope that maybe what I write about my experiences might be of help to someone else.

      I believe that the current voice I am hearing is a fragment of my own mind that has somehow been split off. So I seek to reintegrate it into myself. And I do that best by ignoring it and not engage in conversation with it. It usually comments on what I am doing or thinking, and it rarely brings anything new to the conversation.

      • Thank you for answering. I don’t want to over step here or try to give you crappy advices or whatever, but I’ve been working with North-American Indigenous Shaman and Sorcerer for some times now. I remember the Shaman talking about the Sorcerer’s soul that it is make or many many fragments. Tinkering with occult powers will do that to you, inevitably at one point in your many lives. Some of our fragments are crazy, some are holy, some are casual, some are stuck in places and patterns. Some are a manifestation of your soul’s recurring shadow. Whatever it is, it is just freaking weird and it has to be approached with caution.

        I understand that you don’t want to channel it or give it more space than it already has. I’m sure this fragment is hostile and that can be dangerous… it could wreck havoc your everyday. If it wasn’t so dangerous and/or annoying, it would be interesting to know its story.

        I wish you strength!

        • Amber Drake says:

          It works best for me to ignore the voice in my head. The less attention I pay it, the less I hear it. My goal is to get rid of it completely. It never has anything interesting to say, either. It’s just comments on whet I’m doing.

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