I am part of a group of Industrial Design students from the Netherlands and we are planning on doing a project to help those with schizophrenia.
We are currently just starting and would like to get to know some people before doing anything else. We are interested in your daily lives and the impact of schizophrenia. Please feel free to mention anything regarding living with schizophrenia.
In regards to our daily lives, we deal with stigma a lot, also with positive and negative symptoms, positive meaning hallucinations and delusions, negative meaning avolition and anhedonia. We have to take meds everyday or take injections monthly or every two weeks or even weekly and be responsible about out health in general, mental and physical. I would also like to state that violence is not a symptom, like everyone some are violent, most are not.
Some of us are very recovery oriented, meaning we try to live the best lives we possibly can, being responsible about our situation. Others are more prone to give up also. Some of us are suicidal, some of us aren’t, but we deal with the thought of having to deal with this our whole lives every day.
I’m a 57 year old male who has lived in an assisted living center for the mentally ill in eastern Oklahoma for almost fifteen years. Because all my peers are sz I don’t feel that much stigma because of our disease. I’m being treated with the med’s geodon and seroquel. They control most of my symptoms, but there is this underlying layer of delusional thinking that I never talk about that doesn’t really surface to my daily interactions. Sometimes it is more real to me than my daily life. I’m trying to decide if I should risk moving into public housing and live on my own, or if I should stay at my assisted living center until I have to go to a nursing home. I would probably be very isolated if I moved into my own apartment, and that kind of isolation can be a fertile playground for my mental illness. There were times when I was stable on my med’s and alone in an apartment, and I had every creature comfort met, and I was about to go out of my head because of the isolation. This is probably a problem for other sz’s as well. It’s hard not to resent the med’s because they tend to diminish you in different ways. They make a lot of us, including me, much weaker physically. There was a time when I could do two-thousand repetitions on the jump rope without thinking about it. I still could if it wasn’t for the med’s. Now I can barely do 200 repetitions. I could walk all day in 100 degree F weather. Now I can’t walk three miles in 95 degree weather. They’ve come out with a new generation of anti-psychotic medications that are much easier for me to tolerate than the old generation. If they tried to make me take haldol again I would choose to live on the street and be psychotic. I’m an aspiring writer, and I could not write at all when I was on haldol, or any of the other older generation of anti-psychotic medications. I can write on geodon and seroquel. They call the older generation of anti-psychotics “typical” drugs. The new generation they call "atypical’ anti-psychotics. Generally speaking, the atypical anti-psychotics are easier for everyone to tolerate, though I have talked to a guy who found geodon hard to tolerate and haldol easy to handle. Go figure. They same med’s can have different effects on different people. There are some people who can be body builders on anti-psychotic medications, though that is isn’t the case with the majority. One drug that huge amounts of might have no effect on one person, tiny amounts of might flatten another person. There was this one guy in the mental hospital when I was who could take any amount of stellazine (a typical med.) and it would have no effect on him. Fifty miligrams of that drug put me flat on my back. The same is true of Trazodone (not an anti-psychotic). Fifty milligrams of that will put some people into a deep sleep for twenty hours. One time I took 4,500 milligrams of it, and it had no effect on me.
Our project is aimed at enabling independency for people that live with assistance. We were all interested in schizophrenia as it is quite an unexplored area in our department.
At the moment we are exploring schizophrenia through scientific papers and arranging meetings with potential experts in the field in Holland. For now we are looking for so called “design opportunities”, situations for which a design could be made.
Looking for opportunities usually starts with looking at everyday scenarios so we would like to know a bit about your everyday lives and maybe things that act as support for your schizophrenia or the ways you deal with said symptoms.
We are looking on the forum as I am writing this post, we just figured asking the community as a whole might provide us with more usable input.
We are also looking to make arrangements with assisted living centres like the one you are residing in. May I ask you what is keeping you from moving to public housing. The aim of our project is enabling people to live independently so your input could be of great value.
What I can think of is that when you have been psychotic, some time after, your brain does not work. You can’t do bills, cook, take care of hygiene. I needed someone to tell me what to do and how to do it.
With me, the reason I hesitate to move into public housing is the paperwork I’d have to fill out. The public housing complex I want to move into is in Arkansas, and I live in Oklahoma. I’d have to get Arkansas medicaid in order to get treatment and medications. I don’t know if I would have to do a lot of paperwork in order to move into a public housing complex in Oklahoma. Also, what makes me hesitate is the strong tendency I have to isolate myself when I am living alone. I don’t need a lot of company, but I do need at least a little. There have been times when I was living alone in an apartment and totally miserable because I was so isolated. That kind of isolation can create fertile ground for mental illness to take root and grow in.
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