Category Archives: schizophrenia

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Living with Schizophrenia

Guest blogger Amy Kay sent the story below to us re: her experiences living with schizophrenia. She has a website too and you’ll find a link to it at the end of the article. Enjoy!

"Rising"  Recovery is about rising upward, again and again.

Hello!

I would love to feature my blog on your website or at least share my story.

This is my personal story of living with schizophrenia:

I used to tell people “I have a bad brain.”

I am not going to say I suffer from schizophrenia but rather I endure and cope with it.

My name is Amy Kay and I have schizophrenia. I do not want to hurt others or myself. Neither do I hear voices and I no longer live in a delusional world.

In 2008 during my initial psychiatric breakdown I did live in a delusional world. In this world I believed I was Mother Earth. I felt I was responsible for taking all souls to heaven with me. I was afraid that my family and friends were trying poison me. I ran away from them. They called the cops and that is how I ended up in the psychiatric ward.

My dad drove from Mobile Alabama to Orlando Florida to take me home with him. During this time I had no insurance so I could not afford the medicines to control my brain disorder. I became fearful that my step mom was trying to kill me. I ended up back in the psychiatric ward. This time in Mobile Alabama.

They put me in a group home. I got my medications straightened out. I am consumer at Altapointe. They have a place for people to get medications for cheap without insurance. So I got my medicines from there until I get insurance.

Today everyone tells me that I am handling my mental illness very well! Sometimes I feel depressed and I have trouble getting close to people. My thoughts can be disorganized. My memory is not always great. Even though I have this disorder I do more than just cope. I take my medications, receive counseling and have a good support system.

I control schizophrenia! It does not control me! Recently I started a blog chronicling my life and how this condition slowly reared it’s ugly head.

I want to inspire people like me that we can live full productive lives! Until recently I would not have attempted to write a blog. However with the encouragement of friends I found that I was more than capable at this endeavor.

Life is difficult. Even more so with a brain disorder but having a fulfilling life is possible!

Thanks for your consideration!

Regards,

Amy

http://voiceofaschizophrenic.blogspot.com

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“Schizophrenia” – Image by Bryn Genelle Ditmars

Today’s blog entry is an image related to both schizophrenia and peer support by artist and Peer Support Worker, Bryn Genelle Ditmars. His explanation of the image is below. Enjoy!

SchizophreniaBryn

My experience of being a Peer Support Worker has been like reaching a beacon of  light at the end of a long tunnel of darkness and struggle. Whereas before, I
was suffering, now I am helping others. This image speaks to me on several
different levels. First, there is the light of truth, symbolized by the candle
flame. Truth reveals that which is, both before the onset of the mental illness
and after the mental illness is managed. Second, there is the world, symbolized
by the flower, which appears to remain a constant element. Third, there is the
face of the person, with an expression of fright and surprise and panic on one
side, and on the other side with a distinct expression of determination and
confidence. Finally, there is the word “Schizophrenia”, a diagnosis that is
ascribed to one percent of people worldwide. In my personal experience, the fact
that I have survived my schizophrenia to the point where I am also able to help
others overcome their schizophrenia, this fact is very nearly proven by the
presently apparent title I now hold as ‘Peer Support Worker’. I have quite
literally taken an about-face turn, as to how I view my illness. In my victory
over the “Schizophrenia”, I am now both confident in my recovery, and determined to maintain my health and happiness. We all have the ability to look at this from a fresh perspective. I believe I can help my clients do so.

Voices and Visions Support Group

The Vancouver Voices and Visions Support group is based on the International Hearing Voices Network and explores the theme of living well with voices and visions.  It is a peer lead pilot program of Consumer Involvement & Initiatives, Vancouver Coastal Health. Questions? Call 604-708-5276.

Below the Group Flyer, you’ll now see a flyer for some events related to hearing voices taking place on April 10 & 11. These events are sponsored by Vancouver Voices and Visions in partnership with the Human Diversity and Wellness Program of the Unitarian Church of Vancouver.

 

 

VoicesandVisions

 

ColemanEvents

Living with Distressing Voices: The Challenge and Some Strategies

Living with Distressing Voices: The Challenge and Some Strategies

By Renea Mohammed

Hearing voices can be a devastating experience. There have been times in my life when I’ve heard nasty, derogatory voices from the moment I woke up until the moment I fell asleep.  They were voices that watched me shower and made mocking comments. They were voices that argued I was stupid, lazy, a bad wife and deserved to be dead – among other unpleasant things. They were voices that told me those who cared about me would all be better off if I killed myself. Once these voices got going I heard them continuously. They’d wear me down and I made suicide attempts trying to escape them. I had no insight. I didn’t believe I was ill. I thought they were real.

I believed I was under surveillance too. This wasn’t nice either – but it was not nearly as bad as the voices.

People tried to get me on medication, but I did not believe it would help. Why would it help with something that is real? A psychiatrist told me about brain chemistry. I left the appointment under the impression that the medication would change my brain chemistry. If my brain chemistry was normal, I reasoned, then changing it would be bad for me. I was dead set against taking medication.

I think it speaks to the power of family and importance of family involvement that a family member – my husband – was able to convince me to try meds despite my very strong reservations. I tried it willingly only because it meant so much to my husband . I don’t think there is any worker who could have got me to do so voluntarily. Unfortunately the drug had side effects. I didn’t like them. I didn’t think it was going to help with anything. So I didn’t stay on it long.

Eventually I had my first hospitalization. There I was forced to take meds because I was seen as a danger to myself. I was on one for sleep and one for voices. The drug for voices had side effects that were actually worse than the voices. Again, I thought about suicide. But I knew the forced treatment was temporary and I’d be able to get off that drug. The knowledge that the forced treatment was temporary is what I hung onto during that first hospitalization.

I did complain about the side effects. But one side effect of the drug was that it made my thinking slow and foggy. I wasn’t as articulate as I normally am. I also didn’t know the words to describe what I was experiencing. People meant well, but they did not understand how awful I felt and so they kept me on the drug.

I’m lucky though. About four years after my diagnosis I found a medication that worked well for me and  had minimal side effects. The only side effect was that it made me tired. I still take it now. My body has become used to it so that it has no noticeable side effect at all anymore. On it, I don’t hear voices and I don’t think I’m under surveillance.  I found this drug while being treated involuntarily – so for those who advocate for more forced treatment, here is a story for you. For me, the issue of forced treatment is not a simple, clear cut one. As I’ve noted, I’ve also had a horrible experience with being treated involuntarily. I’ll add that I came close to having a second horrible experience – but that is not what I wish to dwell on here.

There are down sides to the drug I take. I am at risk of developing diabetes and liver problems. I sometimes worry about developing metabolic syndrome and the shortened lifespan that can lead to.

I’ve tried going off my meds. I’ve learned from experience that doesn’t go well for me. The voices always come back.

What all this has left me with is a strong interest in how people manage to cope and live with voices. It’s not because I’m against medication. I take medication and it’s played a key role in my recovery process. But one reason it took me so long to learn that the meds worked was because some meds didn’t work for me at all and some meds took a long time to work. It is possible to be on meds and still be hearing voices.  There are also some unfortunate folks for whom current meds just don’t seem to work. They’re treatment resistant. So exploring ways to manage or even live well with voices is very worthwhile.

I did have strategies that helped me to cope with my voices, although I didn’t think of them as “coping strategies”: they were just things I did. I’m going to share them now, not because I think these strategies are the best way to cope with hearing voices or that they’ll work for every person, but rather because they might be helpful to some folks who hear voices that are distressing.

If I come across others who are willing to share their strategies on this blog I will post them as future entries.

Strategies I Used:

A. Distraction:

Sometimes talking to people about things that were completely unrelated to my voices was helpful. It helped me to not focus on what the voices were saying.

Sometimes reading helped as a form of distraction. I had a hard time with reading, because the voices would be talking while I was trying to read. It was a bit like trying to read a book in front of the TV with the TV on and the show being about you: makes it hard to focus on the book. But I tried to read a lot and sometimes I would succeed in losing myself in a book. Then I’d still be hearing the voices but they became a kind of “white” background noise that I wasn’t following.

I used a rhyming technique that was also a form of distraction. I’d start with a verse. The first verse was always:

Voices, voices in the air

Voices ,voices everywhere

If I ever found out who

I’d shove your face in doggy doo.

I’d then change the words to the verse while keeping the same simple rhyming scheme. I’d see how many new verses I could come up with in a row without pausing between them. This meant that as I was saying the current verse (in my head) I was also trying to come up with the next verse. When I ran out of new verses I’d just start over again. It required enough concentration that although I’d still be hearing the voices, I really wasn’t following what they were saying.

B. Music & Sound

Sometimes I’d crank my Walkman up full blast (in the days before iPods). Listening to the loud music would block out the voices. I know it’s not good for your hearing and for that reason wouldn’t recommend it, but it was something that helped me. I’ve met others though, who say they’d just hear voices in the music so it wouldn’t work for them. We are all different.

Music was also helpful in that it influenced my mood. Certain kinds of music would help me relax or lift my mood and this helped me to cope. Music was also sometimes a form of distraction.

Other sounds were helpful too. I’d turn on the TV and various radios in my apartment all at the same time so that there were non-distressing voices competing with the distressing ones in my environment.

Other times I’d whistle. Again this was to create a sound to compete with the voices I was hearing.

C. Talking

This is one of the things that helped me the most.  I have a very supportive husband (and family in general). My husband was willing to listen to me when I needed to share what I was experiencing – even when I was going on at great length about what the voices were saying or the delusional ideas I had. Because he was willing to listen and I had someone to share with, I never felt like I was alone in my struggles. I always felt like I had an ally. Having someone willing to listen, who didn’t need to change the topic, was tremendously powerful. I never felt alone.

D. Visualization

Sometimes, when the voices were upsetting me, I’d visualize myself in a cave. The walls of the cave were protective, but the voices were coming in through the opening. I visualized them as black tentacles lashing at me but they were limited to accessing me through the opening of the cave.  They also had to make it through the shield I imagined having at the entrance of the cave, which was my anger with them. Another defense I visualised was a music box which represented the music, whistling and other sounds I used to cope. The music box was inside the cave with me. And there was also a fire which kept burning. The fire represented my “goodness” – things like my love for my husband and family. It kept burning no matter how much the tentacles attacked. The piece of art that appears with this article is a representation of the visualization I did.

E. Changing my Thinking

I once made a very simple change to the way I thought about my voices that made them much easier to bear. When I first started hearing voices, I imagined them as coming from people who were better than me: smarter than me, better looking than me, more successful than me etc. Then one day I got to thinking: these voices are pretty darn mean. They’re wrecking my life and they aren’t just wrecking my life, they’re wrecking things for all the people who care about me. The voices aren’t coming from people who are superior, they’re coming from low-life scum. I’d never do what they were doing to me to someone else. I was superior to them. This made all their derogatory remarks sink in less.

I hadn’t gained insight yet. I still thought it was all real. But I had still found a way to change the way I thought about my symptoms in a way that made them easier to bear. I tend to think being offered cognitive behavioural therapy for psychosis would have been helpful.

Was this enough?

No. It was like putting a tiny bandage on a great big wound. My voices were too negative, too constant, and too persistent for all this to be enough. But it did help and so I am sharing.

Postscript:  I thought I should add a bit more about my recovery to this article. To me, recovery is about “living beyond your illness:” living a life that is satisfying, fulfilling and meaningful. I think I am far along the journey of recovery. I have a good marriage to a wonderful man, I have a good job, I have friends, I have freedom to pursue my interests and I live in a nice place. I think I am “living beyond my illness” and far along the path of recovery. I am happy. Isn’t being happy with one’s life what recovery is all about? To see an article more focussed on my experience of recovery click this link to  The Schizophrenia Society of Canada Newsletter with recovery article on page 5-6. It is interesting that one response to the linked article was for someone to say I was never really sick because I do so well now.

I Had Insight Into My Recovery

This post is from one of our guest contributers who shares a turning point in his recovery journey. Zerom is a Peer Support Worker and author of two books: “Not Guilty but not Free” and “Alone in the Crowd.”

I Had Insight Into My Recovery

By Zerom Seyoum

I have been suffering from mental illness called paranoid schizophrenia. The medications do work and offer relief but always to a degree. The first medications I took were effective mainly in blocking the voices but not the paranoia. The medications had terrible side effects. So I kept saying I am doing very well although some of my treatment team found it difficult to agree. The psychiatrist decided to keep me on the same treatment. I kept complaining of the side effects. My psychiatrist did everything else to alleviate the pain but changing the medication. My psychiatrist left for another city and a new psychiatrist was assigned to me. I told him that I was doing very well and that I had recovered. My life experience was: any sick person would take medications and gets well in two weeks or in a month or six months or cease to live. I had no experience with a sick person who would take medications through out his life.  So the psychiatrist believed me and took me off the medications as I requested. It was a big relief from the side effects. But I had difficult sleeping although I was on sleeping medications. It took only two or three months to be deluded with paranoia again. I experienced again the same symptoms as my first experience with schizophrenia. All the delusions I was experiencing were realities to me. A close staff approached me and told me that staff were saying I was very sick and he asked me to tell him how I was feeling. I told him I was doing fine.  I trusted him and told him that the hospital was the one hiring mercenaries to kill me or to drive me crazy and that I would keep on fighting it. Medications wouldn’t fight for me. I didn’t know that he would report this to my treatment team. The delusions, fear of everybody outside me, were eternal torture. But I preferred this eternal torture to being put back on the same medications and suffer from the excruciating side effects.  Unfortunately/fortunately what I feared came to be realized.  The psychiatrist concluded that I was sick again and he put me on the same medications I was put on before.  But this time he gave me the same medication in injection form and not pills. My delusions gradually vanished. I was relieved from the paranoid delusions I was suffering from. Besides this time, the medications had very little side effects compared to the pills. For the first time I knew I couldn’t go without the medications. For the first time I had insight to my mental illness.  

 But due to the medications or the illness or the hospital environment, I was unable to concentrate for more than an hour a day on the French language correspondence course I was taking at the hospital. Then an hour later I couldn’t remember what I read or learned. I said to myself, “not to worry; one day I will be out of the hospital. Nobody will force me to take these medications and I will join a university and get my PhD or at least MSc and live a good normal life like the other people.”

It took me a while to learn that I have changed and that I will never be able to tackle life as I once did. I came to know I was different from whom I was before I was sick. I came to know I couldn’t do what I was able to do before I got sick. For the first time I was able to have insight to my mental illness. And I dropped all the dreams of PhD or MSc. Once I knew this, I stared the long journey to recovery.

 In the hospital I had no hope. I had no future. I had no dream.  Everyday and night I was thinking of ending my life.  I used to dream about it. In fact I attempted three unsuccessful times. Eventually, I left the hospital.

With the support of one mental health organization, I was placed in a one bed room apartment. I started a new life different from what I knew in the hospital. There was nobody I could talk to. There was nobody I could laugh with. Days and nights were very long. Although I had it all !!, everything became meaningless and redundant. I had too much time in my hands and nothing to do. There was no social life. I kept attending one mental health social club for two to three hours a day. But I couldn’t win a friend. I had a visit, one day a week, from out-reach workers. But the extra time and loneliness reached the highest point in my life. I concluded that the best thing for me was to end my life. My apartment was in the second floor and one day I went to the balcony to throw myself down to the cement ground to my death.  To my surprise, for the first time in my schizophrenic life, I was scared of death. Sweat started running down my cheeks. I looked back and looked at my room. I had everything I ever needed. Above all I had freedom which I was deprived of when I was in the hospital.  For the first time I had value for my life.  This made me think of better things than death. Once I had insight to life with mental illness, I started thinking of ways I could volunteer and contribute and be productive. I started the long journey of recovery.

A short time later I was admitted to a peer support worker training. It was not easy because I was falling asleep in class while attending the training and I had difficult remembering what I learned afterwards. Whenever we had a break one classmate used to bug (annoy) me saying, “I saw you. You were sleeping in class.” I also used to sleep on the bus on my way to class and back. Once I had a Starbucks coffee in my hand and I fell asleep on the bus. One of the passengers thought I would spill the coffee on him and woke me up and said, “I guess the coffee is not helping.” I studied the course day and night. I gave it all I could. Best of all I won a friend and I successfully completed the training. I obtained a part-time job as a peer support worker. Ever since I have been sharing hope with my clients. Working as a peer support worker has speeded up my recovery. Helping clients who are going through what I went through has given me self-satisfaction and self-esteem.  There is no contribution and a more productive thing than helping a person who feels he has no hope for recovery, no future, no dreams and who feels lonely and alone. I am a good listener and a close companion to each of my clients. Isn’t that what a peer means?

25 years later, I still take medications four times a day and another medications in injection form twice a month. I tell you, I know when my recovery started but I have no idea when it ends.

“Over the Edge” – A Song about Schizophrenia

This week’s blog entry is a song by Peer Support Worker, Karen Graham. It encapsulates her experience with schizophrenia. Click on the link below to hear it:

“Over the Edge” by Karen Graham

Enjoy!

Kim Calsaferri Receives Honorable Mention for the City of Vancouver’s Access and Inclusion Award

Kim Calsaferri, an Occupational Therapist and Manager with Vancouver Coastal Health, who has worked hard to promote service user and family involvement in the mental health system, was honored for her work recently with an honorable mention for the City of Vancouver’s Access and Inclusion Award. She was nominated by Erin Goodman, Susan Inman and Renea Mohammed.

Kim graciously consented to have her speech appear as a blog entry on this site. In it, she tells the story of “Mary”, a woman, now passed away, who was one of the first Peer Support Workers in the Vancouver Mental Health system and who was well-known for her inspiring, thought-provoking and humourous public speaking.

The Downtown Eastside, where “Mary” lived for over 30 years is the poorest part of Vancouver.

From left to right: Sharon Marmion, Renea Mohammed, Mayor Gregor Robertson, Kim Calsaferri, Kary Otterstein, Regina Casey

Kim Calsaferri’s Speech

Your Honor, City Council Members & guests,

Thank-you very much for this recognition today; I am honored. I would like to give a special thank you to my colleagues, Erin & Renea and to Susan, a family member who has a loved one with mental illness who put my name forward for this award.

Access and inclusion for people with disabilities is close to my heart and paramount if all individuals are to lead full lives and be true citizens in our communities.

Today, I think about a colleague & friend I’ll call Mary, who passed away 20 years earlier than what is average in our society.  Mary had schizophrenia and moved into her own apartment for the first time at age 57, after living in the Downtown Eastside (DTES) for over 30 years.

She contributed a great deal to the mental health system giving back to others as a peer support worker and often joined me and others to educate mental health staff and the public about mental illness.  At the new staff orientation we would ask people; “What’s important in your life?” Ponder this for a moment.

What always surfaced was health, family and friends, intimate relationships, fun, relaxation, a home to call your own, work that gives purpose, and full access and participation to our communities.  Mary would say this is what we all want.

In the earlier years of Mary’s life before she became ill at age 28 and for the last 10 years of her life, after she had her own apartment on Commercial Drive, Mary had all these elements in her life.  Prior, she was a working mom of two, had her own apartment in Kitsilano, and very much enjoyed friends and her interest in politics.  After, she reconnected with her children, worked as a support worker and contributed much to the MH system.  Imagine the outcome for Mary if access to housing, family support and inclusion in work and her community had happened 30 years earlier.

The City and its partners have been working very hard to develop and expand housing opportunities for people who are homeless and live with mental illness and addictions. I congratulate you on this work.

However, we all know there is so much more to do, to create a civil and just society and full participation for all citizens. Breaking through the red tape and barriers to access to supports, addressing stigma and discrimination and supporting people with decent affordable housing, creates a city where full participation is possible.

I accept this honor on behalf of all the Marys in our city today, in the hope that we will continue to strive to break down the barriers to access and inclusion for all members of our society.

– Kim Calsaferri