Sunday, August 10, 2008

Psychosis, coping, and Elyn Saks

Well, today I have been sleeping a lot. Seroquel exhausts me, especially at the dose I'm on right now. I had plans to do other things, but I was too tired. Perhaps I'll get used to this dose, however, the last time I was put on it - some months ago - I had to have it decreased just to be able to wake up in the AM and function during the day.

I've been having a lot of disjointed thoughts. I don't often talk about my thoughts anymore. Usually, if I'm having intrusive, obsessive thoughts (which I do quite frequently), I tell myself "Oh, there's an intrusive, obsessive thought. Be gone, thought! Go away." and then I ignore it. I go on, and act like it's not happening. Unfortunately, there are times when the thoughts come in and disrupt my ability to do other things, like hold a conversation that sounds "normal" or read a book or focus on much of anything. Such are the kinds of thoughts I've been having the past couple days.

Yesterday, however, I made plans and went out anyway. I first went out with my mom and my sister, who is down here for the summer but who will soon be returning to New York, where she lives for college. Then last night, I met up with my good friend, Kathy, who was once my roommate in a group home where I lived before I moved into this apartment. Kathy's the same age as my mom, but we have a number of things in common. And, after knowing her for a few years, I found out we also have the common love of bookstores, so we met at one and stayed till they closed the place.

I was having some trouble reading, however, because of blurry vision, which is either from my Sjogren's Syndrome (something I just ignore most of the time and don't currently get any treatment for because it is not too severe at the moment), or from the increase in Seroquel. So we talked, and I looked at pictures in magazines. Trouble was, while we were talking, I was having intrusive thoughts that my friend was recording the conversation with some sort of recording advice, which she was going to use against me by replaying my words to people who I cannot trust, and, while I recognized these thoughts as paranoid and abnormal, I also had trouble getting them out of my head. I was careful not to say certain things, just in case I was being recorded. This tendency to think I'm being recorded has been with me for many years. It occurred for a very long time before I was ever diagnosed with Schizophrenia, and it is something that I have hardly ever talked about with anyone, ever. No harm in mentioning it here though. Perhaps, by talking about it, I can take away some of the power the thoughts have over my mind.

Today, I got up, went to the bookstore again, to continue reading the excellent memoir of Elyn Saks which I will mention more later, and found that my thoughts were too disjointed for me to read today. So I eventually came home, where I ended up falling asleep.

Also, interspersed with these other issues, I've had the old urges toward suicide and self-mutilation return. I quickly turn my mind away from them, whenever possible. If I was to dwell on them, I might, for example, start looking up gun stores on the internet, or go to a gun store, or actually buy a gun - as I did years ago. But I know better now, and I do not want to die, so I tell myself, "there's the old thoughts again. Ignore them", and I try to push them away. That's not easy to do, but I try. The phrase, "The time to die is nigh", came into my head today, and I couldn't shut it off for hours. It was like listening to a cd player on "repeat", with these words going over and over in my head, nonstop. Right now it's still going on a bit, but it's in the back of my mind, where I have managed to push it.

I've also been hearing my phone ring for the past week, quite a bit. When it's not actually ringing. I will ask someone, "did you hear that?" or I will look at my phone, since it's a cell phone and when it rings the numbers come up on the screen. I will note that it is not actually ringing, put it down, and go on. Sometimes things like this happen, and they're minor so I do not pay much attention to them. However, combined with the hallucination of the woman in my bedroom the other night, and the various intrusive and paranoid thoughts, it looks like I am having some trouble that will need to be addressed. The increase in Seroquel might help, and I might be able to manage to keep up with my job while on this dose, if I go to bed as early as possible every night and take naps if I ever have the time.

I'd really like to return to college this semester. I was putting off the decision while I was looking for a job, because it was more important to survival that I find a job. Now that I've got a job, and since my job is willing to accomodate my college schedule, I would like to take classes. But I'm afraid, because with the befuddled way my brain is at the moment, there's not much hope that I could keep up with most classes. I know when my brain can handle school, and I know when it can't. Right now, I don't think it can. I might, however, stubbornly try anyway. I have to see if I can get the financial aid first.

Meanwhile, and probably because this stuff has been going on, I've been reading a book by a woman with Schizophrenia, in increments, at the bookstores. Her symptoms were mostly a bit different from mine. For example, she talked out loud to voices that she heard, which is something I never did if other people were around, because I wanted to make sure no one new there was something a bit odd about me. But in other respects, she and I have some things in common. And the book is well-written. So I wrote an email to my family and friends about this book, and included a link and an article with more information about the author, Elyn Saks.

Before, I conclude, however, I'd like to just address Ken's comment. I understand what you mean about people obsessing about illnesses. I know how that can worsen depression and also lead one to think that an illness is defining their entire life. However, I really do make conscious efforts to avoid doing that on a daily basis. I have an autoimmune disease called Sjogren's Syndrome and a chronic pain condition called Fibromyalgia. There was a time, years ago, when I constantly thought about how sick I was, physically. I don't do that anymore. In fact, I don't even get treatment for those illnesses anymore (although I probably should). I found that thinking of my self as a sick person all the time was horribly depressing. So, I understand your point.

I don't think I obsess about Schizophrenia, however. I do write here about it, because that is what this blog is about. But I also do other things with my life, like writing funny things that have nothing to do with any illness, building websites, working (or looking for a job, as was the case for a while), participating in discussions on feminism on internet message boards, and reading a lot of books, for example. So while I appreciate your advice, I think that the attention I pay to the Schizophrenia might seem greater than it is to people who only know me through this blog, but people who know me in real life and know other things about me, would know that I don't talk about mental illness all the time. In fact, some months ago, I stopped running the Schizophrenia support group I started back in October, because I did not have the energy to try to help other people with mental illnesses every Saturday anymore. I found that running that group made me more depressed, and did not really help me much at all. So, I understand your point.

Now, then, here is the email I sent out to friends and family about Elyn Saks' book:

Not just because of its effect on my own life, but because 2 million Americans have Schizophrenia (approximately, though there may be more), I wanted to tell you about an interesting author and her book on the subject. Her name is Elyn Saks. She attended Vanderbilt University, Oxford, Yale Law School, and now is a professor at the University of Southern California. She also has Schizophrenia, and wrote a book about it that I have been reading, called The Center Cannot Hold.

This page has information on Elyn and her book, and a video of her speaking at the college where she teaches:

Also, I just wanted to point out a couple of things about this book, for anyone who may be interested:
-Many, if not most, people with Schizophrenia cannot accomplish the things this woman has done in academia because their brains are not able to function well enough, enough of the time (It's not about her having better willpower than other people; she had good healthcare, and she was also lucky, and probably a genius from birth). I point this out, because, I have known people with this disease who cannot take care of themselves, or manage a job or go to school or do many other things that many people take for granted, and because sometimes I have been unable to do those things myself for the same reason. For instance, years ago, when I was starting to hallucinate, I was supposed to go to Smith College. Didn't happen. Couldn't happen. I have explained this a number of times, but if anyone has questions on the subject, just ask and I'll tell ya what occured.

-This book makes some really excellent points. In particular, she mentions that she hid her illness, instinctively, because she did not want people to think anything bad about her, or to think she was crazy, even long before she was actually diagnosed with Schizophrenia and new she had a real illness. I did the same thing, for years. So I'm sure a lot of other people have as well. There are two sides to that coin: if you don't seem sick, people like you better. But if you don't seem sick, you never get better because you never get the help you need to do so. Basically, it's not worthwhile to feign normalcy.

-Saks points out in her book that the beginning (or Prodromal) period of Schizophrenia is often mistake for teenage depression, anxiety or normal growing pains. This was the case with me as well. I have never seen anyone make this observation before.

-Stories like this one can provide much-needed hope to people with mental illnesses, for whom society as a whole doesn't provide a whole lot of hope other than 'maybe a better medication which will cure me will come out some day before I die, and I'll get that healthy life I always wanted'. It's very easy, particularly after you've been homeless, and/or dropped out of high school and/or college, and/or lived in shelters or the back of a car, and/or been hospitalized more times than you can count, and/or been committed by a judge, and/or lived in an Assisted Living Facility, and/or a group home, and/or an apartment owned by a mental health organization, and/or gone on disability because you can't work full time, and/or taken 2000 different psychotropic medications, and/or gone through years of therapy, and/or been stigmatized by much of the planet earth, well, it's very easy to lose hope under such circumstances. I have had all these circumstances occur over the years, so I speak from experience when I tell you that this book can provide hope to people who otherwise don't have much of it in supply. (Another excellent resource is the book and the movie A Beautiful Mind, about John Nash, though some naysayers claim he never really had Schizophrenia because he is so intelligent and he won the Nobel Prize, so they assume he wasn't really all that sick).

-People with Schizophrenia are often viewed as subhuman freaks of nature. This is not fair, right, or good, and should not occur in 2008, but it still does. I , myself, don't particularly like running into homeless people who stop talking to the voices in their heads only long enough to ask me for money, because I do not know how to help them. However, I do know I could very easily be them. If not for proper medication. (There, but for the grace of God and all that). So it's nice when someone puts a face to the disease and isn't afraid to talk about it. Like Elyn Saks.

1 comment:

  1. My name is Richard Elmore and i would like to show you my personal experience with Seroquel.

    I am 17 years old. Have been on Seroquel for 1.5 years now. I am currently trying to come off it, but my anexiety has been through the roof, and even 2mg of extended release xanax isnt working

    I have experienced some of these side effects-
    the biggest one is weight gain, i have to take at least 600mg at bed time for it to work.

    I hope this information will be useful to others,
    Richard Elmore

    Seroquel Prescription Information


I welcome comments from all readers and encourage you to leave them! Please do. However, due to spam, I review each comment before it can be posted, so it may take 24-48 hours before your comment appears on the blog. Please be patient. I post comments that are not spam.Note: my definition of "spam" includes ALL links to sites claiming to cure or provide "the solution" for incurable diseases such as Schizoaffective Disorder and Schizophrenia. Vulnerable people come to my blog, and I will not let them be preyed upon, but people who post snake oil remedies on the internets. Take your garbage and peddle it elsewhere. Since Blogger doesn't weed all that garbage out, I've been doing it myself for years.