Wednesday, October 26, 2011

What's in a name? Why people with mental illnesses deserve to be told they have the illness (what a concept!).

I had an annoying experience in a class today, and I think some of you readers will understand why. I was listening to a speaker in a social work course, who is a mental health counselor, discussing her job. She was talking about patients (er, consumers!), who have Borderline Personality Disorder. She was saying how a lot of therapists do not want to work with people who have this disorder. And then she said the following: "One thing you should NEVER do, is to TELL a person with Borderline Personality Disorder that they have that disorder! Remember never to do that! Because if you do that, the first thing they will do is go on the internet, and look up Borderline Personality Disorder, and then start acting out the things they read about that are symptoms of that disorder, which is dangerous because the symptoms are things like cutting and trying to kill yourself."

She said this. I thought to myself, "What?". I actually expected the professor to disagree with what she had said, but that did not happen. Now, I have some people who read this blog, and whose blogs I've read, who have diagnosed Borderline Personality Disorder, and who write about how they are dealing with it. The one blog in particular I am thinking of is written by a very strong person dedicated to getting better. If such people do not even f'ing know that they have the disorder, because their therapists and psychiatrists purposely HIDE that from them, then how the heck are they ever supposed to get any better?? And while I'm at it, I think there were people who cut and attempted suicide well before the existence of the internet, which we all know was only invented by Al Gore (yes, I am joking here) a few years ago.

So this brings me to an important point. Knowledge is, indeed, power. And having a name for your disorder matters. A lot. I know this because I spent seven years of my life living through psychosis without knowing at all that I was psychotic. I was never told. If I was told, I have no memory of it. I know that for the majority of those years, the reason I was never told during any of my hospital stays that I was psychotic was probably that nobody had figured it out. But during some of my hospital stays, when I was clearly, obviously very psychotic, there is no way in hell that they didn't figure it out. I recall very clearly screaming out loud to the voices I heard at the top of my lungs and hospital staff trying to calm me down, as I laid in a bed, kicking and screaming, "I AM NOT A PUPPET!!! I WILL NOT DO WHAT YOU SAY!!!". I do not recall anybody ever saying to me, "You are hearing voices right now." I do not recall them ever saying, "You are psychotic". I do not recall them ever saying, "We think you have Schizophrenia or Schizoaffective Disorder." Not until 2005.

Let me tell you what happened when they finally did tell me this, in 2005. It changed my entire existence. It gave me the knowledge that there was an actual name for what was so obviously wrong with my brain. It gave me the knowledge that I had a very legitimate disease, and that it was caused by brain chemicals. It gave me the knowledge that I was not just some crazy lunatic who was a lost cause. It gave me the knowledge that treatment was available, and that I could, in fact, get better.

There is a lot of power in a name. The first name that was close to being accurate for me was Paranoid Schizophrenia. I was told that I had that disorder in 2005. I was told this after I almost shot myself with a gun that I bought for the purpose of shooting myself. I was very, very, very psychotic at that time. I had been to this same hospital multiple times within the two years prior to being told I had Paranoid Schizophrenia. When I was told that I had this disorder, the doctor said, "I have met a man named John Nash. You remind me of him. I want you to watch this movie called A Beautiful Mind." Mind you, that was after I had already wrote on this very blog using the pseudonym "beautiful mind, complex life", because some part of me already identified with that man in that movie. I am not a genius. I will never have a Nobel Prize. But I do have something in common with John Nash, in that I walked around psychotic for years. I thought the CIA was after me, and I thought that I was a secret agent for the CIA too. I thought I was a Manchurian Candidate and had an implant inside my body. I believed these things for years. Yet, it took almost shooting myself in the head before anybody figured out what was going on and decided to share that information with me.

In that hospital, one of the patients was discharged, and she came back bearing gifts for me and some of the other inmates. One of my gifts was the book Surviving Schizophrenia, by Dr. E. Fuller Torrey. It wasn't like I could read that whole book from front to back, but I read as much as I could and I learned for the first time about this disease. I understood when I read those words: this is what is wrong with me. It has a name. Other people have it too. There are medications to treat it. I am not a lost cause.

Later, my diagnosis was changed to Schizoaffective Disorder, but since I strongly identify with the Schizophrenia symptoms (which are a part of Schizoaffective), I kept using the term Schizophrenia when I wrote on this blog for a few years, before I changed the name of the blog to indicate I had Schizoaffective Disorder. But the point of this is, I had to have the knowledge that there was a legitimate cause for my bizarre experiences in this world, and that the cause was not that I was Jesus Christ, or that I was Anne Frank, or that Armageddon was coming, or that I was a robot, or that I was L. Ron Hubbard (all of these being things I believed at various times). The cause was that I had a disease of the brain. With a name. And a doctor told me the name.

If nobody had ever told me that fact, do you know where I'd be right now? I'll tell you where I'd be: dead. Very definitely dead. I would never have managed to stay on medication if I had no idea that I actually needed the medication or any reason to believe that the medication could help me, which I would not have had if I had not known the name of the disease. I would have never gotten hopeful that I could improve, and that the medication could make me improve, if nobody had ever explained why. I would have never taken the medication, if nobody had ever had enough faith in my cognitive capacity to understand basic knowledge and logical facts, despite being floridly psychotic at the time, enough to tell me that there was a disease happening in my head, or enough respect for me to take the time to explain that disease.

A doctor told me the name. He told me to watch the movie. My mom brought A Beautiful Mind to the hospital, and I watched it. And I understood. This is what is going on with me, I thought. Yes, this is it. It is not that John Nash and I are both CIA operatives. It is that we both have a disease. And somebody brought me a book, and I read it, and I understood. There are other people with this disease. There are treatments for this disease. This disease is not a death sentence. I do not have to die. I can live now.

So, what's in a name? Life. Life is in a name. I firmly believe that anybody who is suffering from any kind of disease has every right to know the name of that disease, and to be educated on it, and to understand it. I firmly believe, also, that you cannot get better from something that you do not know even exists in the first place. I also believe, that I have gotten very much better indeed from the horrible, completely psychotic state I was in, back in 2005. The reason that happened is not just some miracle or coincidence. The reason that happened is that I knew what was wrong, and I knew what had to be done about it. I was then able to do what had to be done, which means things like going to see a psychiatrist regularly, keeping in touch with a case manager, visiting my pals at Walgreens pretty much every week for my prescription pick-ups, swallowing countless pills, going to the mental health center for injections every two weeks, and spending four years in therapy. If I hadn't done those things, like I said, I would not be here right now. Doing those things allowed me to also do the other things that have greatly improved my life, such as working a job consistently for years, going back to college and remaining there for years, socializing within activist groups, trying to keep my apartment clean (though this lapses at times), having a few friends or at least people who are close to being friends, and having a decent relationship with some of my family. I couldn't have happiness, or feel like I had improved, without having those aspects of my life. Also, I have had a roof over my head consistently for six years.

Before I knew I was sick with psychosis, I was misdiagnosed terribly with things like Bipolar Disorder and, worse, Dissociative Disorder(s), and PTSD, and even, by one idiotic doctor, Borderline Personality Disorder (he didn't know I thought I was a CIA agent, but he did know I cut myself, plus he was an idiot). I was in and out of hospitals. I lived in three homeless shelters in three different states and all sorts of other, very brief, substandard living situations. I had no money, no job, no ability to get a job or go to college, no friends except online, and no future. I constantly contemplated suicide much of the time. It is very bizarre, actually, that I didn't kill myself, but it wasn't for lack of trying. I tried numerous times. So that is where I was when I was not properly diagnosed, or, if I was ever properly diagnosed, was not told my actual diagnosis. And I have to believe that by the time I was talking about going to a concentration camp and screaming out loud to voices I heard, that somebody figured out I was psychotic in one of those hospitals. Which means that somebody knew, and never told me.

Seven years is a long time to be psychotic and have no idea what is actually wrong. I will never get those seven years back. That was my twenties. I lost most of my twenties to psychosis. They are gone now. I had a lot of horrible experiences that I would like to forget ever happened, because I was psychotic. I will never be able to actually forget those.

So, as you might imagine, I am very, very appreciative of the fact that I was finally told, in 2005, "you are psychotic". I had every right to know that. If somebody has cancer, or AIDS, or diabetes, or heart disease, and a doctor figures it out, they generally tell the person. If somebody has a mental illness, sometimes they don't. Perhaps they assume, like this therapist who spoke to my class today, that you will purposely go and acquire more symptoms of your disorder if you are told the name of your disorder. Perhaps they assume that you are too far gone to have any capacity for insight into the fact that you are psychotic, because they assume you are not intelligent enough to understand that you're psychotic while you still are psychotic. Which means they are wrong. I understand very well now, when I am experiencing psychosis. Understanding it doesn't mean it goes away, but it means, I take medications, and I go to my doctor and I say, "I am having negative and positive symptoms of psychosis right now, and I need my medication adjusted". And then he can adjust it. Which means I can live my life.

A couple weeks ago, a few minutes after I told my doctor about this experience sitting in a restaurant listening to people talking to me, when they were not actually talking to me at all, and sending them telepathic messages in response, which I know is a very abnormal thing to do, he said, "You seem to be hearing some things." Obviously, true! And thank you for respecting my intelligence enough to acknowledge this basic fact of my existence without assuming that I am too stupid to understand it!

So for any mental health professionals out there, please do not purposely hide the name of someone's disorder or disease from the person, because you could be taking away their ability to cope, manage their disorder or disease, and, thus, survive, by doing so. And that is a crime, in my opinion.

I am diagnosed with Schizoaffective Disorder, Bipolar Type.

And here is some information from this website:

DSM-IV Criteria for Schizoaffective Disorder

Diagnostic Criteria

An uninterrupted period of illness during which, at some time, there is either (1) a Major Depressive Episode, (2) a Manic Episode, or (3) a Mixed Episode concurrent with symptoms that meet (4) Criterion A for Schizophrenia.

Note: The Major Depressive Episode must include depressed mood.

(1) Criteria for Major Depressive Episode

Five (or more) of the following symptoms have been present during the same 2-week period and represent a change from previous functioning; at least one of the symptoms is either (1) depressed mood or (2) loss of interest or pleasure.

Note: Do not include symptoms that are clearly due to a general medical condition, or mood-incongruent delusions or hallucinations.

depressed mood most of the day, nearly every day, as indicated by either subjective report (e.g., feels sad or empty) or observation made by others (e.g., appears tearful). Note: In children and adolescents, can be irritable mood.

markedly diminished interest or pleasure in all, or almost all, activities most of the day, nearly every day (as indicated by either subjective account or observation made by others)

significant weight loss when not dieting or weight gain (e.g., a change of more than 5% of body weight in a month), or decrease or increase in appetite nearly every day. Note: In children, consider failure to make expected weight gains.

insomnia or hypersomnia nearly every day

psychomotor agitation or retardation nearly every day (observable by others, not merely subjective feelings of restlessness or being slowed down)

fatigue or loss of energy nearly every day

feelings of worthlessness or excessive or inappropriate guilt (which may be delusional) nearly every day (not merely self-reproach or guilt about being sick)

diminished ability to think or concentrate, or indecisiveness, nearly every day (either by subjective account or as observed by others)

recurrent thoughts of death (not just fear of dying), recurrent suicidal ideation without a specific plan, or a suicide attempt or a specific plan for committing suicide

The symptoms do not meet criteria for a Mixed Episode

The symptoms cause clinically significant distress or impairment in social, occupational, or other important areas of functioning.

The symptoms are not due to the direct physiological effects of a substance (e.g., a drug of abuse, a medication) or a general medical condition (e.g., hypothyroidism).

The symptoms are not better accounted for by Bereavement, i.e., after the loss of a loved one, the symptoms persist for longer than 2 months or are characterized by marked functional impairment, morbid preoccupation with worthlessness, suicidal ideation, psychotic symptoms, or psychomotor retardation.

(2) Criteria for Manic Episode

A distinct period of abnormally and persistently elevated, expansive, or irritable mood, lasting at least 1 week (or any duration if hospitalization is necessary).

During the period of mood disturbance, three (or more) of the following symptoms have persisted (four if the mood is only irritable) and have been present to a significant degree:

inflated self-esteem or grandiosity

decreased need for sleep (e.g., feels rested after only 3 hours of sleep)

more talkative than usual or pressure to keep talking

flight of ideas or subjective experience that thoughts are racing

distractibility (i.e., attention too easily drawn to unimportant or irrelevant external stimuli)

increase in goal-directed activity (either socially, at work or school, or sexually) or psychomotor agitation

excessive involvement in pleasurable activities that have a high potential for painful consequences (e.g., engaging in unrestrained buying sprees, sexual indiscretions, or foolish business investments)

The symptoms do not meet criteria for a Mixed Episode

The mood disturbance is sufficiently severe to cause marked impairment in occupational functioning or in usual social activities or relationships with others, or to necessitate hospitalization to prevent harm to self or others, or there are psychotic features.

The symptoms are not due to the direct physiological effects of a substance (e.g., a drug of abuse, a medication, or other treatment) or a general medical condition (e.g., hyperthyroidism).

(3) Criteria for Mixed Episode

The criteria are met both for a Manic Episode and for a Major Depressive Episode (except for duration) nearly every day during at least a 1-week period.

The mood disturbance is sufficiently severe to cause marked impairment in occupational functioning or in usual social activities or relationships with others, or to necessitate hospitalization to prevent harm to self or others, or there are psychotic features.

The symptoms are not due to the direct physiological effects of a substance (e.g., a drug of abuse, a medication, or other treatment) or a general medical condition (e.g., hyperthyroidism).

(4) Criterion A of Schizophrenia

Two (or more) of the following, each present for a significant portion of time during a 1-month period (or less if successfully treated):



disorganized speech (e.g., frequent derailment or incoherence)

grossly disorganized or catatonic behavior

negative symptoms, i.e., affective flattening, alogia, or avolition

Only one symptom is required if delusions are bizarre or hallucinations consist of a voice keeping up a running commentary on the person's behavior or thoughts, or two or more voices conversing with each other.

During the same period of illness, there have been delusions or hallucinations for at least 2 weeks in the absence of prominent mood symptoms.

Symptoms that meet criteria for a mood episode are present for a substantial portion of the total duration of the active and residual periods of the illness.

The disturbance is not due to the direct physiological effects of a substance (e.g., a drug of abuse, a medication) or a general medical condition.

Specify type:

Bipolar Type: if the disturbance includes a Manic or a Mixed Episode (or a Manic or a Mixed Episode and Major Depressive Episodes)

Depressive Type: if the disturbance only includes Major Depressive Episodes

Sunday, October 23, 2011

Improvements: and memories of the Skyway Bridge

Today I went to this outdoor festival with my mom, which involved driving over the Sunshine Skyway Bridge to get there. I don't have good memories of that bridge. Sometime in 2004, close to 2005, I took my mother's car to that bridge, drove up to the top of it, which is 150 feet up, sped up to top speed and slammed into a guardrail. My plan was to go over the side of the bridge into the water, and die. The policeman who called my mom said, "She rolled the car three times, Ma'am". And yet, I left without serious injuries. I also left without getting psychiatric help. They sent me home from the emergency room that night.

The reason I had done this was that I was floridly psychotic, and experiencing command hallucinations, where everywhere I went I was hearing people tell me to die. I have written about this before here, but basically it was a few weeks of non-stop hearing everyone tell me to die, including children playing in a park, and voices on TV and the radio. I saw signs that meant for me to crash that car on the top of that bridge. I was told to do so. I wanted my nightmare to end. So I did it.

At the hospital, a policeman asked me what had happened, and I said, "I lost control of the vehicle". Because I associated psychiatric care with going to a concentration camp, and I wanted to avoid that at all costs. My brother and my mother both, separately, called the hospital to tell the staff this was a definite suicide attempt, and that they should not send me home. The hospital staff didn't care. I also lied and said I had no insurance, which might have been part of the reason for this ridiculous act of sending me home.

When I went home, barely able to walk, I stumbled into my neighbor's apartment where he was sleeping and said, "I need help." My family was fed-up with me, didn't know how to help me or what was wrong with me, and nobody came to see me. I laid in bed for days, hallucinating, and not knowing what to do.

These are not fond memories. But today, I talk regularly with two of my siblings and with my mom, and I go places with my mom regularly. I have a joke that we have a "codependent hotline" because we talk on the phone so frequently. I am close to my mom now. Back then, I wasn't. Mental illness is a destructive thing. We don't have a perfect relationship, but at least now we can talk about these things that happened years ago and say, "I'm glad that's over." Because, so help me, I will never again go to the top of the Sunshine Skyway Bridge, a place where people kill themselves so frequently it's a cliche to do so, and try to commit suicide.

When I was younger, I was drawn to that bridge when suicidal, and I would go there, park my car, at the fishing pier before you get to the bridge, and think about jumping. I don't do things like that now.

My mom is religious so she got a kick out of rolling down her window when we drove over the top of the bridge, and yelling, "You didn't get her, Devil!". Of course, I don't believe in the devil, and I wish my mental illness was not at times attributed to demon possession, as it is by my mom, but whatever. She enjoyed doing that.

We talked about little things that happened when I crashed the car. The way the car looked - absolutely totaled - when my mom saw it, and how she couldn't believe I had survived. The library books she saw in the car that made it look like I had planned on going on a trip somewhere. I made a joke about what happened when I went to a library after that to explain, "I do not have the book anymore to return it, because it was lost in a car that I crashed on the top of the Skyway Bridge." The librarian said, "Oh, why don't you just pay the thirteen dollars?!" She didn't believe me. This is funny to me now.

I have come a long way since those days, and I am grateful for that fact. Medication has been a big help to me. Soon, I will be taking 80 mgs of Latuda, and I hope that the psychotic symptoms I still occasionally have will go away then.

Tonight, I finally did something I have been putting off for months. I cleaned my apartment. I have to say, that this is a sign of improvement for me. The apathy and the negative symptoms of psychosis that lead to not doing things are subsiding somewhat. I am able to focus more on the things I need to do, now, than I was a couple weeks ago. I have posted a lot here lately, much more than usual, and almost every day, because things have been difficult, but I wanted to let you know that I feel they are improving. This is a good thing.

Saturday, October 22, 2011

Remembering a special advocate who has left us

Sometimes you meet people who are special in a way that others are not. Perhaps they are just more kind-hearted and generous than the average person you've met before. Perhaps they do good for others without asking for anything in return, and are very humble about their generosity. Such was the case with Paula. Paula was one of our local NAMI (National Alliance on Mental Illness) members and volunteers for a number of years.

Paula could bake the best cookies, brownies, and anything else with chocolate in it that anybody could bake on this planet. Her baked goods were all the rage, so eventually, she developed a business, "'Lil Pumpkin". 'Lil Pumpkin wasn't about making money for Paula. It was a way she actually raised money for our NAMI affiliate's Consumer Council, which I have been involved with for a few years. She raised money that helped some of us who live with mental illnesses to go to conferences.

She was not a wealthy woman. She had worked at Big Lots as as cashier for a long time. Before that, in her younger years, she owned a restaurant with her husband who has since passed away. At her restaurant, on the holidays, they say that she wouldn't let anybody go hungry whether they had the money to pay or not. Paula was that kind of human being. At Christmas time, she spent three months baking the goodies for the holiday party that was open to mental health consumers in the local area. I never got to one of these parties, but they are well-known as having been wonderful occasions to the consumers who enjoyed them. They were given Paula's baked goods, and she made sure that there was something for everyone. She had a heart for consumers, and wanted to help improve people's lives.

Paula took in one of my fellow consumer advocates to be her roommate eleven or twelve years ago - long before I met either of them. This man, who lives with Schizophrenia, had not had many periods of stability until he lived with Paula, and then they become attached at the hip, did things together all the time, and Paula looked out for him, making sure he took his medications and tried to help him avoid hospital stays like the many he had before he knew her. They had a very special bond, which was evident if you knew them at all.

About two weeks ago, Paula passed away from Pancreatic Cancer. The last time I saw her, which was unfortunately a few months ago, I asked how she was doing and she crossed her fingers and smiled at me. Paula always, always had a smile on her face. I have two pictures of myself and Paula on my computer, but I'm not comfortable putting a picture of myself on this blog right now, so I'll save those for myself. The pictures are from last year's annual NAMI banquet, where Paula won the Advocate of the Year Award and I won the Consumer of the Year Award. We were both very excited that night.

Today I went to a Celebration of Life service for Paula, where we looked at a Powerpoint show of pictures, and people gave speeches and about how she had touched them and enriched their lives. I cried at points. It was very sad for me to realize she was gone. In recent months, I haven't been involved with NAMI activities because I was having a hard time managing my school and job duties. So I sort of dropped out of the picture. And I didn't know that Paula was near death. If I had known, I would have tried to have visited her, or given her a gift of some kind, but there is nothing I can do about that now. So I gave the consumer who she was so close to a small gift: a candle that smells like homebaked cookies.

Paula will always be remembered and appreciated by our NAMI affiliate. She was a golden soul with a beautiful spirit. I will never forget her.

I added this picture from a pumpkin festival I went to with my mom the day after Paula's memorial service. Paula's nickname was 'Lil Pumpkin because she was five feet tall and one Halloween she wore a giant, inflatable pumpkin costume, and the nickname stuck.

Wednesday, October 19, 2011

I'm gonna kill the bear

Before this semester started, a friend of mine who was my professor years ago sent me a clip from Youtube to this scene from "The Edge". I have never seen that movie, and since I'm a vegetarian and don't believe in killing animals, unless they are eating you alive or perhaps if you are starving to death, I probably wouldn't want to watch that movie. But I liked this scene and the point of it stuck with me today, as I was thinking,"kill the bear", at school. I took both of my tests, which I thought I was going to fail, today. The reason I did this was, as I mentioned before,  I would be getting into a terrible quagmire with financial aid if I withdrew again and I know that I would get extremely depressed if I withdrew. So I told myself, whether or not I failed them, I was going to take these damn tests.

I got A's on both my tests. This was very surprising to me! In the one class, the professor had stated nobody  could pass the test without reading the textbook. I did not read any of the chapters because every time I tried, my brain refused to focus on it. But I did fine. Since I had told her a couple of days ago that I was going to withdraw rather than fail her class, and then I changed my mind and took this test anyway this morning (in the disabilities office), my professor asked me if I got her email today when I got to class. I said no, I hadn't been on email today. She smiled and said, "You did fine". I assumed this meant I got a C on the test. At the end of the class, when she handed us our tests she asked me if I was surprised and I really was quite surprised. After that I decided to go ahead and take the other test that she had allowed me to put off, and I did fine with that one too.

I am glad I didn't withdraw now. This is not easy, by any means, right now. I mean, life in general is not easy for me right now. But if I gave up on everything, then it would be worse. Sometimes you have to tell yourself you are going to kill the bear.

Thank you to everyone who responded to my post on trying to get through college the other day!

Tuesday, October 18, 2011

It's a Brand New Day

In February, I was at this concert with my friend. I really like Joshua Radin's music and have for a couple years. He got involved with this program called "Little Kids Rock" where they teach elementary school students to play music, and he brought some of these kids from local schools to the concert to play one of his songs. This morning, very early, I woke up and was listening to this song for encouragement. I love this song. Here are the lyrics:

"Brand New Day"

Some kind of magic

Happens late at night

When the moon smiles down at me

And bathes me in its light

I fell asleep beneath you

In the tall blades of grass

When I woke the world was new

I never had to ask

It's a brand new day

The sun is shining

It's a brand new day

For the first time in such a long long time

I know, I'll be ok

Most kind of stories

Save the best part for last

And most stories have a hero who finds

You make your past your past

Yeah you make your past your past

It's a brand new day

The sun is shining

It's a brand new day

For the first time in such a long long time

I know, I'll be ok

This cycle never ends

You gotta fall in order to mend

It's a brand new day

It's a brand new day

For the first time in such a long long time

I know, I'll be ok

Go back to my doctor in a couple hours....hopefully things will improve soon.

Monday, October 17, 2011

Not withdrawing from class

I'm going to try to stay in both my classes. I am partly doing this because of the disastrous financial consequences that would come from withdrawing right now. I talked to financial aid today, and basically was told "There is no way you will get financial aid in the future if you withdraw again." Of course, this is not the complete truth. There are ways of appealing these things for medical reasons; I have done it before. But I know that it would be a big pain. Also, if I withdraw right now, I will be stuck repaying the money I got from my student loan this semester, which is money I don't actually have anymore, so that is rather problematic. So I emailed my professor, kind of embarrassed to have to discuss this with her any further since I already told her in an email yesterday that I was dropping the class, and I said basically, I will just go ahead and stay in the class and do what I can do to pass, although I might do really badly on the tests. She said this: " I will work with you to support you in any way that is feasible so that you can continue in my classes."

I thought that was very helpful and a very nice thing to say. So I am going to go ahead and not withdraw for now. I would get so incredibly depressed and probably suicidal if I withdrew, that it is better if I just try to stick it out even if that means not doing well grade-wise.

So, life goes on. You just have to do whatever you can do sometimes.

Sunday, October 16, 2011

My neighbor - and finding things to smile about

I've written some rather depressing posts here lately, so I wanted to tell you a happier story. I have a neighbor, Mary, who has a rather lonely life. She has Bipolar Disorder and bad arthritis, and she's been quite debilitated and isolated for years. She is 63 years old, but seems much older. She has one friend, who she only talks to on the phone. She does not drive, or work, or have any regular activities other than weekly visits with her mother. So, I usually visit her every week, though I did it about three times a week for a while, before things got more difficult for me and my time was more consumed with school and my own brain problems. When I visit her it's kind of hard for me to know what to discuss, because I don't want to make my life sound more interesting than hers, but she always asks me questions about things like my job and school and I ask her questions about her day and how she's doing.

Today, I went to the library, and somehow managed to write a paper for the one class that I am thinking I will be able to complete this semester. I had my Mp3 player with me. Music has always helped me motivate myself, and it has an added bonus when you are having perceptual problems about things people are saying around you.

Then, tonight, I finally visited Mary again since it's been over a week or so since the last time I saw her, and at that time she was without a phone. I had told her to let me know whenever she wanted to use my phone, but Mary isn't one to come and visit me (though she always seems to like it when I visit her), so she never did. The last time I saw her she said her mother would be taking her to get a phone the following day. Today she had a phone, but she mentioned that she had gone without one for a week. "Why didn't you ever tell me so I could let you use mine?" I asked. "I thought about it, but I don't know.... My arthritis was bothering me," she said, "I was immobilized." I understand this kind of thing.

Suddenly Mary's face brightened a bit. She has a very, very meager income from SSDI and SSI, and she doesn't buy many things; but she was very pleased to tell me she bought herself a CD walkman. She had talked about getting one of these before, and I tried to find my old one to give it to her but never found it.

"Look!" she said, showing me the package with the CD player in it. "Well let's get it out of there!" I said. We got it out of the package, and I showed her how to use it. She put in one of the few CD's she owns and put it in the earphones. "There is something about listening to music in your ears.." she said. "Yes; it can help." I said. We turned it on.
"I'm not sure if it's worki....OH WOW, JENNIFER!!!! THIS IS WONDERFUL!!!!" she yelled over the music. Her entire face blossomed into a huge smile, and suddenly the usual worry lines were gone, replaced by a look of sheer joy. I couldn't help but burst out laughing, and she laughed too. She was so excited. "I HAVE WANTED ONE OF THESE FOR YEARS AND NOW I FINALLY GOT ONE!!" she said. She has not had the money to buy it before, apparently. It cost twenty dollars. And now she has one, and she is completely thrilled. I was so happy to see her so happy that it made my day. "DO YOU MIND IF I LISTEN TO IT FOR JUST ANOTHER MINUTE AND THEN I'LL VISIT WITH YOU?? I LOVE JULIO IGLESIAS!!" I laughed again. Of course, I did not mind. "HERE, JENNIFER, LISTEN TO IT!!! IT'S SO GREAT!!!" she said, handing me the earphones.

This reminds me of the day Mary and I went to the local Subway for a sandwich. She was so excited about it, since she had never been to one before, that she said it was "like Christmas" because you could get a sandwich, a bag of chips, and a drink for $4.50 if you bought the special of the day. I go to Subway a few times a week much of the time, and I couldn't believe how exciting the place could be to someone who had never been there before.

I mention this because sometimes it is important to find happiness in the little things. Little things can make a difference in a person's life.

Personally, I love my Mp3 player almost as much as I love my computer, and am really glad I found it after it was lost under my bed for weeks.

Saturday, October 15, 2011

Preoccupation, Walmart, and College

There is an article I read on Latuda, that said your scores on the Positive and Negative Syndrome Scale (PANSS) improve on this drug. Of course, that research was, I think, done by the drug company. So take it with a few dosages of salt. I did look up the PANSS, and just thought I would mention it here in case anyone else (like myself) had never heard of it before. It is used to evaluate people with Schizophrenia, and I imagine Schizoaffective Disorder too. It's not like there is some psychiatric researcher who will be interviewing me any time soon, so I just used it as an evaluation tool for myself. (I need very badly to understand exactly what is wrong with my brain so that I will not just think I am crazy and that all is lost. I must know that there is a disease process that might be treated.)

On the PANSS, there is a symptom listed called "Preoccupation", and while I recognized myself in many of the other symptoms listed, I recognized this one as the most prominent problem in my life at the present time. The reason that this is the worst problem is that this is affecting my ability to read more than anything else, and also preventing me from doing a lot of everyday activities, more than anything else is (besides withdrawal).

Preoccupation is defined in the PANSS as: "Absorption with internally generated thoughts and feelings and with autistic experiences to the detriment of reality orientation and adaptive behavior." I am in this range: "Moderate - Patient occasionally appears selfabsorbed, as if daydreaming or involved with
internal experiences, which interferes with communication to minor extent.
Moderate severe - Patient often appears to be engaged in autistic experiences, as evidenced by behaviors that significantly intrude on social and communicational functions, such as the presence of a vacant stare, muttering or talking to oneself, or involvement with stereotyped motor patterns."

What I am doing, all the time, every day, is thinking. I know that I have said I am having all these cognitive problems where I cannot think. That is to say, more accurately, I cannot think about things I would normally be thinking about, or that I should be thinking about. I can think a lot, and do, about specific things, the same things, over and over again. I am ruminating all the time. I spend many hours doing this, while accomplishing nothing. It is ruining my life, because when I sit down to study, among the other things that go wrong with my brain, this problem dominates, and it is impossible to read because I cannot divert my thoughts from their preoccupied state.

This is sort of like obsessional thinking, which I have had in the past. But it is more akin to being locked inside an internal world, where all I think about is my little world. I ruminate about conversations with people, and about what is wrong with my brain and the way that I am not functioning, and what I can possibly do about it. When I am able to read, I read things about people getting through college with mental illnesses, or about research on Schizophrenia - there isn't that much research I've seen on Schizoaffective Disorder lately. I cannot read in depth research or understand things about what specific neurotransmitters do which things in the brain, but I can at least scan through articles. I am doing this because I am desperate for help.

I ruminate to the point that I can sit somewhere, with a vacant stare, just staring straight ahead, for hours. I do it in the libraries, at home, at work, wherever. It makes me look abnormal, and it makes me feel very frustrated that  I am doing this. But it is like something is just not clicking neurochemically and I cannot just snap myself out of this.

People have made remarks at work that I am staring off into space or that I look like I am "dreaming". This would happen more often if I didn't work sitting in a cubicle where most people can't see what I am looking at. Haha.

On the other hand, when I do venture out into the world, I am overcome by sensory input which my brain misinterprets. For example, if people are talking around me somewhere, I start to think they are all talking to me, and that they are telling me things that I should be doing or asking me questions, which I will sometimes start responding to telepathically. I know that this is psychosis, and this is the main reason that I know that I am experiencing psychosis right now, rather than depression without psychosis.

I ventured into Walmart today, and you can find other posts on this site where I have written about the dangers of going to Walmart with Schizophrenia or related disorders. In Walmart a person is overcome by sounds, lights, tons of things to choose from to purchase, signs on everything, constant people moving around with their scooters and carts, and when my brain isn't doing well, I simply can't handle a Walmart. When my brain is doing better, I can go to Walmart every week, which I was doing for a while. It's not that I love
Walmarts, but they are more affordable than other stores.

Tonight at Walmart, I walked in reminding myself, out loud, what I was looking for, in order to make sure I did not forget. "Shampoo". "Make up". "Toothpaste" (I still forgot to buy the toothpaste.). I was trying to go quickly because I knew I wouldn't last long in that store today, and then I heard this kid say, "Mommy look at that lady," and I thought the kid was definitely talking about me. Perhaps the kid was not talking about me at all, but this is how it goes when you feel like people are talking about you all the time. I rushed through trying to pick up basic, necessary items, that did not require a lot of thought and contemplation, and got some stuff and practically ran through the store with my cart in order to get out of there as quickly as possible, actually saying, "Help" and "Get me out of here", out loud, under my breath, because in situations like this I beg the universe to help me. I knew that I could simply not tolerate another second in that store, and I was afraid there was no way I would make it through the check-out line. I did get the stuff, manage to go through the process of paying for it and getting myself to my car, and then, as soon as I got home, I lied in my bed, exhausted from this process, for about 40 minutes, before I could put the stuff away that I had bought.

This is how it is to go through life when you're dealing with psychosis. Simply going to Walmart will become something you put off ever doing. Simply doing little tasks that were a part of your regular life when you were not currently psychotic become extremely difficult and angst-ridden.

After I got home, I become again absorbed in my thoughts, retreating into my inner world of preoccupation which is very hard to escape. I feel that I am getting lost inside myself.

But I did manage to buy shampoo, make up, cat litter, and food. At least that much is done.

I don't think there is any way I can finish both my classes this semester. This fact is making me very depressed. I do appreciate all of the comments with your input and advice, a great deal. I think that if it was possible to get an Incomplete from my professor, which is apparently not going to happen, I would be less demoralized by this experience. I have already spoken with her at length, however, and gotten what advice I could from the tiny office for students with disabilities, and I have not gotten any information on alternative assignments that could be substituted for tests. Since I can't read the book, I don't know how I could even do an alternative assignment anyway. Maybe I could if she would be a little more flexible about this, but I did not get the impression she was willing to be that way. I also feel like at this point the pressure of these two classes is adding to my problems, and I am not able to handle them both. So what I am probably going to be forced to do is to withdraw from one of them. I will be trying to continue the other one, since for that one I already almost completed a 20-hour internship and I do not intend to have done all of that for nothing.

The idea that I could never really get better from this illness is very depressing. I was living with this belief, which kept me going, that I could get through this university in the next three years, get a BA, and then get a career, and have a life without poverty. I was really believing I could do that. But now I think perhaps I was living in a dream world. I don't know how to look forward to a future without any of my goals in it. This is a difficult thing to do.

Wednesday, October 12, 2011

Trying to manage college

Today I met with my professor, who teaches both my classes, to see what I can do to remain in her classes and explain my situation. I am not sure how this went. I mean, I might have given too much information, because I was trying to explain that I am not normally this way anymore, but I do not normally go into these kinds of conversations with professors. Actually, I don't have these conversations with a lot of people. But it is too far gone now to not have the conversation with the professor if I am going to avoid dropping out of school. She was very nice and understanding. She asked me questions about my medication changes, and I tried to convey exactly what is going with them. I explained I am working with my doctor, and about the Latuda. She said how I seemed to be doing so well at the beginning of the semester, and I explained that I really was not having the kinds of problems I'm having right now at the beginning of the semester, so that is why. She said I could have the option of putting my tests off, but of course, if you put them off then they get closer to when the other tests are and when papers are due, and things. Therefore, I am not sure it would make sense to put them off. But I did put one of them off, which I would have been taking today. I said I would go ahead and take the other one, for the other class, next week, in the disabilities office. I don't think taking it in the disabilities office is really going to make a lick of difference, though. I am pretty sure there is no way I can study at all for either of these tests, and I am pretty sure that fact isn't going to improve by next week. I asked about getting an Incomplete for a grade, which is something I have done before, but she said that it was too early in the semester for that. You can only get an Incomplete for a grade after you've done half the work for the class, and with both these classes, half the work hasn't been due yet.

The way things are going, I might be forced to withdraw, but that would be a big problem. One of the reasons it would be a problem is that this university now has a strict rule about how many times you can withdraw, and I have already withdrawn from many classes at the community college, particularly when I was not on antipsychotics yet. To further complicate things, I get financial aid and I already used up significant money on tuition plus expenses, and if I withdraw I'd be faced with repaying this money as well not being able to get financial aid easily next semester, if I came back next semester, or next year, if I came back then. Also, if I withdraw, my student loans will go into repayment mode, and I can't afford to start repaying them. So because of these reasons, I really do not want to withdraw. Also, I really do not want to withdraw because I am really going to be disappointed and depressed about having to withdraw again if it comes to that. I have taken classes every fall and spring, as well as some summer semesters, since 2008 without withdrawing or getting and Incomplete. It is really not an acceptable to me that I would have to revert to withdrawing again. I do not want to feel like a failure or give up.

I don't know what I am going to do. If it comes to the point that I have to withdraw, then it is not the end of the world, I guess, but I really want to avoid that. It is just impossible to think well right now. Someone gave a presentation in my class and I have no idea what she talked about since I couldn't focus on it. It's too bad that the person giving the presentation was the same person who takes notes for me in the class, because I took very few notes of this myself!

Right now, I am in the library. It's pretty ridiculous to be in a library right now. I mean, it's not like I can read anything. But I thought about it for some length of time (I don't know how long), while sitting in a student lounge, and finally decided that I would force myself to go to the library and force myself to try to study whether or not it is entirely futile to do so, because part of me keeps thinking that if I try hard enough I will be able to overcome my inability to focus. I suppose you can overcome it to some degree, some of the time, but when things are like they are right now, it is pretty impossible. I can't even follow Facebook anymore, so I don't bother looking at people's posts while I'm at work. I used to spend a lot of time looking at articles that people posted links to via Facebook. But it's not like I can read a lot of articles right now. Plus, I don't really care about much of anything other than my inability to function. I am normally not so focused on myself and my problems, but it is really difficult to think about other things at this point, because of how difficult things are, and how hard it is to do anything the way I would normally be doing it if I was not this way.

I wrote down some observations about things and came to the conclusion that going off the Latuda has definitely not improved me. It is pretty obvious now that being on that medication was not the cause of this situation. I mean, the medication wasn't helping me, but it was also probably not making me any worse.

I wonder how anybody ever gets through college like this. I did get an AA degree finally last year, but I couldn't do that now. I wonder how people get their bachelor's degrees or master's degrees or PhD's while they're psychotic. The answer is, probably, most people don't. There are a few exceptions, like the people with Schizophrenia such as John Nash, or Elyn Saks who got advanced degrees while being psychotic. But most people can't do that. I don't know how they could do that. At the same time, I know that the last semester I was in school, which was this past spring, I did perfectly fine without trouble. I also was doing pretty well at the beginning of this semester. So this is not a permanent situation of being stuck inside cement (that's what it feels like), unable to do things. But I really wish that there was a quick fix for it so I could get through these next few weeks of school. I don't care if I can't take classes next semester; that's fine. I just want to be able to finish this semester, without quitting. But my brain is not cooperating with what I wish it to do.

Tuesday, October 11, 2011

Medication changes, experimenting, and negative symptoms

So, I saw my doctor today, and since I have been writing my frantic thoughts about what is wrong with me the past couple of days, I might as well tell you how that went. He did not seem to understand why I thought that Latuda was causing me the current problems I'm having. He did remind me that the reason I went on this Latuda in the first place (which was, in fact, done partly because I requested to try it), was because at that time (August), I was having some (mild) auditory hallucinations. They were not happening a lot though, as I recall. I actually think I may have exaggerated them because I don't remember them being that bad at all. Anyway, he said, it is possible that the fact that Latuda hasn't been helping is not because it doesn't work for me, or that it is making me worse, but rather because I am not on a high enough dosage. Then I confessed to the fact that I pretty much already stopped taking it over the weekend (I was terrified to keep taking it; I am usually compliant). So, at that point he said that we can go ahead and do an experiment where we just wait a week and see what happens. If I get better, then my theory about Latuda was right. If I get worse, then obvious, well, I don't really want to think about what happens then. I said I would like to go back on Seroquel, if it turns out that it is not the Latuda creating the current situation.

I'm pretty sure that it's not just the Latuda creating the current situation. The reason for that is, I haven't taken Latuda in a couple days, and I do not feel any better than I did a couple days ago. It has occurred to me that  I may have made a very crucial mistake by stopping it, since it might have actually been that the dosage was too low, but honestly I didn't know people took much higher dosages because it's a new medication that not many people have taken in the first place, and there is little information about it on the internet. Plus, I was desperate for things to improve. So I stopped taking it.

I thought maybe the doctor would put me back on Seroquel right away, but of course if he did that today then there would be no way to know if the problems were caused by Latuda or not. Also, I am taking this herb Valerian Root for sleep. It doesn't really work that well in the first place for me, so I am mostly taking it because I would probably allow someone to hit me over the head with a baseball bat in order to go to sleep some nights, but anyway....he said that it is possible this herb has added to my cognitive problems and cloudy thinking. So I can't take that anymore.

As far as what is going on, my doctor thinks it is not really depression, but is those negative symptoms I was talking about here in a post a couple of days ago. So that is rather unfortunate, since I think he's right and I wish that were not the case. The thing is, nothing much helps people with negative symptoms, in many cases. And I have always just assumed I did not have negative symptoms, though I do not know now whether or not I was having them sometimes when I thought I was just very depressed. It's important to know the difference, because the treatment is obviously different. You take antipsychotics for negative symptoms; antidepressants for depression. Most antidepressants, with the exception of Wellbutrin, have historically not helped me much, even when I was suicidal. But then, I have been on a lot of medications in my life. I have often said I felt like a walking pharmacy. And it would take some kind of computer program or encyclopedia to keep record of them all and the dosages and how they affected me, which is a task that has never interested me much.

I am more than a little nervous about the possibility that things are actually going to get worse from here, rather than better. I am hoping that is not the case. The good part is, I go back to the doctor in a week, and he can put me back on Seroquel or something I guess at that point. It's not that I am dying to take Seroquel again. There are just not a lot of things that have helped me for long periods of time, but for a long time I did well on Risperdal Consta injections and Seroquel, albeit it went up to a very ridiculously high dose of Seroquel, because I had some symptoms that would come up. My doctor asked me if anybody had ever talked to me about Clozaril, which they have not as far as I can recall, and I really do not want to take Clozaril since I have heard so many negative things about it and the fact that you have to get blood work every week for a great length of time. It's also usually talked about as a drug of last resort, though I did hear some people in NAMI say before (and perhaps something I read said this too, can't really remember) that it should be used more often because it is very effective for some people.

Anyway, as far as college goes, I have a meeting with my professor tomorrow to discuss with her what I am going to be able to do to complete her two classes. I had to resort to emailing her and telling her I have this problem with the inability to read right now due to Schizoaffective Disorder. This isn't the way I wanted my professor to view me - as a psychiatric patient. After all, I am studying to be a social worker and I am doing an internship at a psychiatric treatment facility, where I am learning how such disorders are addressed by professionals, so it would have been really nice and dandy if it didn't happen that I became psychotic at this time and had to tell my professor that I'm just as sick as the people I'm studying. I don't plan on telling her everything, just enough that she understands that I have some cognitive impairments. I tried to just do this with a brief email but she said I should come in and see her. The advisor at the disabilities office at the university told me that I should talk to her, and ask about getting an extension on upcoming tests (there is one this week and one next week), since I have not been able to read any of the materials for the tests despite spending hours trying to do so. So that is why I am talking to her about it, and the good news is that she already said I can have an extension on the test that's tomorrow. The problem is I do not know when things are going to get better enough for me to be able to read the materials! After all, there are only a few weeks left in the semester, and somehow, I will have to manage to do all of the work that is due in those weeks, not two months from now after some medication kicks in. So I am not really sure what to do about this, but she said we could come up with a plan, so that is good. She used to be in the mental health field as a therapist, so I think at least she has a little working knowledge of what I am talking about here. Plus, she seems really nice so that helps.

At the moment, I don't know what is going to happen. I am really hoping things just improve right away, by some kind of act of the god I don't believe in, once Latuda gets out of me. But chances are, that might not happen. So for now I am just going to try my best to do the important things like remaining employed and (hopefully, somehow) finishing this semester. That's enough to worry about. I am not really able to deal with other things.

In case I have never mentioned it enough times, this illness is incredibly frustrating, and annoying. And I hate it. I really hate it. I know it isn't going away, and it might not kill me, but it is a very difficult thing to live with at times.

 On the positive side, I am occasionally still able to think things are funny and laugh, or make jokes. The doctor viewed this as a good sign. I guess it is. I would probably be dead right now if I did not have a sense of humor. How on earth could you manage such insanity without a sense of humor? Not to mention, how on earth could you live on this insane planet full of all its crazy problems without a sense of humor? I mean, it is very hard to laugh at the moment, but once in a while I do. So I am glad at least that part of my brain continues to work. I think things are so incredibly odd sometimes, whether they be things that other people say or things I myself am doing or thinking, that there is some amusement in them. Other than that, I am not really myself. If you saw how I was acting, and you knew me, you might be able to tell that I am not really myself, although I do try to hide this fact when I am around people. I get very paranoid that I might seem "crazy" to people, which is silly, because I don't believe that anybody is "crazy", except for deranged lunatics like Rush Limbaugh or Michelle Bachmann. I know there is such a thing as a neurochemical imbalance, and that this is what is making me odd, but once in a while I get pretty freaked out that somebody is looking at me as if I am odd. Sometimes they are, in reality, not just in my imagination. For example, two times today at work people have said, "What are you looking at?" or "Are you dreaming?" since I was staring straight ahead not doing anything at all. It is not normal to stare straight ahead and do nothing at all, so I try not to do this when people are looking at me. The great part about my job is that I sit in a cubicle with not many people looking at me. Very good move, taking this job. Unfortunately my job does involve talking to lots of people on the phone, and that has become very difficult since I can't follow what they're saying. Sometimes I just sit there for a minute, trying to figure out what this person just said. And then they'll say, "Hello???" and I try to pretend like we have a bad connection or I just can't hear them well enough and get them to repeat themselves. I do this all day now. Oh well.

Monday, October 10, 2011

Talking to Yourself, and Depersonalization

Thanks to everyone who responded to my last post, which was all of last night (this morning). I don't usually post this often again, but someone mentioned that I should, so here I am. In regards to the comment about taking my blog post to the ER, I am not going to do that, but I appreciate your concern. There is really nothing good that would come of me going to the ER. For one thing, I am not suicidal, so I will not willingly be admitted into a psych ward. For another thing, they might want to admit me anyway, and then I'd lose my job, which would make me unable to pay my rent, which would put me back into a position I was in numerous times in the past when I lost all my belongings and had to go live in an ALF or a group home. And I'm not willing to give everything up - not now.

I did have a friend who is my only close friend around here that I ever actually see, who got concerned when I did not answer my phone last night, as it was turned off, and she called me six times, and then actually drove to my apartment to see if I was home, when I was out, because she said, "I thought after the way you were talking that you might be lying on a park bench somewhere unable to get home. Or in the hospital". I was bothered that she would freak out like this, because, although it is nice of her, I have a major, major fear about people calling the police on me because I am acting too "crazy" when I get like I am now, and I do not ever want that to happen, and I do not ever want people knocking on my door without notice because I am not really up for visitors.

I wish I could say that I was keeping up with college work. I did manage to write my paper last night, in the middle of the night. Then I was up all night, unable to sleep at all, but I did not manage to study today for my upcoming test. I sat in a library, for a couple of hours, staring at a page of paper and a page in the textbook - the study materials. I could not make sense of them at all. Not at all. I tried. I mean, I sat there, for hours, trying. And it did not work. Finally, I gave up telling myself that I might be able to study at home today. But that didn't work either.

One thing I have been able to read is some of my old blog posts here - which is something I never normally read. And I notice that a month ago I seem to have been doing  quite well. I recall that I was able to study for hours. I could read. I could write easily for my classes. I could contribute in class without difficulty. I have really deteriorated in the past month. It has been about two months since I started taking Latuda, and while I can't necessarily blame the drug on my deterioration, and while it was myself who asked to be put on that medication in the first place, I know longer wish to take Latuda. So I will be going off that. I'm a very med-compliant consumer, but when it comes to something that I think is clearly not making me any better and may be making me worse, I have to make a decision to refuse to take it anymore. I could be wrong, of course. I am not a doctor, and I don't recommend that people pretend they are their own doctors. But you do have more knowledge of what is going on with you and your body all day long, every day, than the clinicians do who can only see you for a few minutes, so it is important that you take an active part in your treatment, I think. I learned this from experience.

One thing I noticed from looking through some of these old blog posts - which I was able to read somehow - was that I seem to come to this blog a lot when I'm not doing well, and I don't write that much when I am doing well, so I apologize about that. It is also possible that I really was that miserable, psychotic and suicidal that much of the time that it was important to write about it here, although I seem to overlook these things when I think about my life. I don't view at as being a constant string of symptoms, but more as episodes that come and go. These blog posts tell a different story, though. I know that the ones from 2008 are primarily negative, because that was a really bad year for me. And that was also the last time I was in the hospital - for feeling suicidal. They kept me for about two days. It didn't help. That same month, January 2008, I also quit my job, and then remained unemployed for eight months. It was not a good time. I am trying really hard right now to not allow myself to revert to a time like that, but it is very hard.

Just now I was standing in my kitchen, because I was going to eat something, or take medication, or stare at the overwhelming dishes, and I felt like I did not even know what to do or why I went in there. I stook looking at the wall. I said to myself, "You hung those pictures on the wall. You went to a store and bought that apron. You bought those matching oven mitts. You know how to do things. You can do things. Why can't you do anything now?" I took the meds, left the kitchen and decided to take a bath, although it took some thought as to why I would take a bath or whether or not there was any reason to do so. I knew I should be studying my useless, futile textbook, but that is not exactly working out. So....

In my post last night I mentioned talking to myself. Of all the symptoms I have written about on this blog, I think that was one I had probably never mentioned before at all. I don't normally tell anyone about that. But when you google "talking to yourself" and "not recognizing yourself in the mirror" (yes, I have resorted to googling such things), you get some information about Depersonalization. This is something I was not too familiar with, or if I was, I don't remember it. I seem to be exhibiting some depersonalization. But it is a familiar thing to me. It has happened before many times.

When I talk to myself, it's not that I'm completely delusional; I don't think that I'm talking to people who are not there. I talk out loud as if I am talking to another person, because somehow this helps me explain my thoughts to myself. It is something that I have actually done, intermittently, since I was about 12 years old. I remember sitting on a bathroom cabinet having a whole conversation with myself in the mirror then. I do not know why this started, but it was around this time that my depression started. I also wanted to mention that when I said I have caught myself starting to do this in public, it is only a few words here and there, and not an entire conversation, like I would do somewhere alone. It does make me feel very weird, and abnormal, so I don't like the fact that I do this. Also,  I realize that I said in my last post I am experiencing psychosis and not just depression, but it is possible that the main problem is severe depression. I really don't know right now.

Anyway, having told you about this embarrassing aspect of my life, I wanted to explain that it is not a totally psychotic thing, because I do not think I am talking to hallucinated people. I am just actually talk to myself. I feel quite disconnected from myself, pretty much all the time right now, so that is probably why I am doing this a lot more than usual. Right now, I am talking to myself about why I am acting so odd, why my brain is not working, what might be wrong with my brain and myself, and why I cannot think, and why I am talking to myself. Generally, that is what it's about because these days my thoughts are ruminating about whatever is wrong with my brain, and I wish I could stop doing this and stop internalizing and start interacting with the world again, but I don't know how. I will go to work and class tomorrow and do my best to feign normalcy, or some semblance of it.

A while back I read an excellent memoir by Marya Hornbacher, called, Madness: A Bipolar Life. In it she talks about having talked to herself when she was manic. I know other people do this, so I wanted to share this excerpt with you so I don't sound quite so freakish that I do this myself.  So here it is:
...."This strikes me as hilarious, and I note out loud, "Hilarious!" over the roar of the vacuum cleaner. I notice I am talking to myself, and turn off the vacuum cleaner so I can hear myself better. "I'm talking to myself!" I remark to myself, as if I am a mother remarking on a particularly endearing and/or cute thing I have done. "Is that odd?" Myself and I continue to converse while I put the vacuum away in the hall closet. "You really should clean this closet," I say, wandering into the thicket of ball gowns and suits as if I'm heading for Narnia. I pick my way over several suitcases and climb up a ladder and down the other side, having realized that it is important to find my bathing suit right now, but I trip on a broken television and land with a thud in a pile of boxes. "Oh, for God's sake, don't get me started," I shout, and crawl back out, finding my hiking boots on the way. I go down the hall to collect all my shoes. "The thing is, probably everyone talks to themselves now and then, don't they?" I sweep everything off the closet shelves and begin arranging my heels in order of color and height. "But perhaps they don't talk to themselves quite this much! Time to do the laundry!"
Now, if only I had a little bit of that mania to help me get some things done. Just for a few might help!

So my question for you readers is, do you talk to yourself? And how often? And when?

Sunday, October 09, 2011

Things fall apart; the centre cannot hold

Turning and turning in the widening gyre

The falcon cannot hear the falconer;

Things fall apart; the centre cannot hold;

Mere anarchy is loosed upon the world
-William Butler Yeats, "The Second Coming"

This is the quote that comes to my mind in very difficult times. Lately, it has been a recurring thought. These lines are also the subjects of a couple books, including one on Schizophrenia, The Center Cannot Hold: My Journey through Madness, which I reviewed here a couple years ago.

I don't know exactly when the current troubles started. I thought I was doing okay. This summer, I cleaned my apartment really well, and had my mom and my sister over for dinner. My case manager said, "I've never seen your place look this good before!" I decorated, a lot. That was around June. I was doing well in June, and July. Although, for the past year, I've had major trouble sleeping, and especially since this past spring, when I went off Seroquel after having been tapered off it for a long time.

Seroquel made me sleep, and I haven't slept well since I started going off that drug. I wanted to go off that drug. It can cause diabetes, and I became prediabetic on it. Right now, I wish I had it back. I'd take it again. I want to right now. That's how bad things have gotten.

I started Latuda a couple months ago. It's a new antipsychotic. Not a lot of research has been done on it, and I read that no research has shown it's efficacy for usage after six weeks. I have deteriorated while on Latuda, which may not be because of the medication, but the medication certainly does not appear to be helping matters. This medication seems to not work for me. It is supposed to help with cognitive problems, and even has been said to be beneficial for the negative symptoms of the Schizophrenia side of Schizoaffective Disorder. Right now I would say, I see no evidence of that.

I could be wrong. I could have somehow gotten really psychotic regardless of whether I was on Latuda, and it could be a lot worse if I wasn't on Latuda. I don't really have any way of knowing.

But this much I know: my brain is not functioning. Most of the time, most of the day, I couldn't write this post well. I am having a moment of clarity, when I can, at least, write. But I am not well. I thought it was depression, so I saw my psychiatrist last week and told him that. He increased my antidepressant. He didn't want to prescribe anything else new at the same time, so nothing was changed with my sleep medication, even though I mentioned that I'd be willing to take Seroquel again, or even Thorazine, just to be able to sleep. But while I was talking to him, I was not thinking of all the things that were really going wrong, and I failed to mention them. I failed to understand that it was more than depression. Depression alone is a bear in itself. But, in my experience, psychosis is more destructive overall to my brain and my ability to function.

I think I am experiencing psychosis now. I hate to even say this, because in my mind I associate psychosis with the times in my life when I was not properly diagnosed or medicated, and was ending up homeless, living in shelters, and unable to get through a day without total mental torment 24/7. Usually, this involved a lot of deep delusions, and auditory hallucinations, what they call the "positive symptoms" of Schizophrenia and Schizoaffective Disorder. The positive ones are the things that happen that aren't supposed to happen. "Negative symptoms" are the things that are supposed to happen but don't happen. Like being able to think. It's hard to get through life when you can't think well.

I sort of stopped functioning, and it started weeks ago. I stopped doing dishes. I just stopped. It became entirely too complicated in my mind to tackle the dishes. I lack energy for such basic tasks, and what's worse, I'm overwhelmed, completely, by them. I stopped cleaning. I stopped doing laundry. It is taking every ounce of concentration, energy, and will power that I can muster to get through the most important things - going to work, and not losing my job, going to college, keeping up with my classes, and doing my internship. This has become extremely difficult to do. I missed two days of work because I was lying, inert, in my bed, immobile all day, just doing nothing, not really thinking. Just lying there. I have missed several days of my internship.

I'm not suicidal. I don't want to die. I'm not even sad. I'm not crying. I'm not just depressed, in that sense. I am more just incapacitated. I cannot watch TV much of the time because it takes too much concentration to follow a show. I cannot read much without extreme effort, and sometimes, not even then. It has taken me seven hours tonight to write a five-page paper, which would normally take me two hours, and I have written something that is not nearly as good as what I could do normally, and I am still not done with it. A week and a half ago, I turned in a paper for a class that I thought I had written pretty well despite doing it right before it was due. It turned out that I wrote the "reflection paper" which was supposed to be about what we discussed in class and what we read in our textbooks, on a completely different class using the wrong textbook. Since I have the same professors for both classes, she understood what I had done. She emailed to tell me, but since I had forgotten to check my college email for a few days, I didn't realize it until the paper was nearly a week late. Then I rewrote it. I did not know what to say to explain my obvious brain problem, other than the truth, so I wrote to her that my only explanation for this was that I have Schizoaffective Disorder and sometimes cognitive impairments which is why I have notetakers in my classes. She gave me an A on my paper. She is very kind.

I don't remember the last time I got my mail. I have gone weeks without grocery shopping. Eating nothing but fast food is a huge waste of money, but I am barely able to function enough to get through the days. I am unable to handle the overwhelming confusion that entails when I walk into a store now. I am afraid to go into large stores, like Walmart, at all, because they would be too complicated. I stare at items on shelves with no idea what to pick, what I am looking for, what I am doing there. I cannot make decisions. I cannot understand basic things. I get confused when people are talking to me, about what exactly they're saying and what they mean by it. I get confused all the time. Everything is too complicated.

My home is a disaster, and my car is a disaster, and I am completely disorganized. I do not remember the last time I took a shower, but I guess it was a few days ago. I wear worn clothes because doing the laundry overwhelms me. I don't do the dishes even though the sink smells badly, and there are little flies starting to fly around. I missed a meeting of the feminist organization I'm in because I totally forgot about it, even though I myself advertised the meeting in numerous places, and then I missed the annual NAMI banquet which I was kindly given a ticket to attend, because I couldn't handle figuring out how to get dressed up, go there, and act like I was okay enough to be around people for hours. I am spending a lot of time staring into space these days, and not a lot of time where I feel comfortable in groups of people.

And then there are the "positive" symptoms. I talk to myself endlessly. I do this in my car, even though people can see me, and I do it at home, on occasion I catch myself starting to do it in public places.

I have been paranoid about the police following me again. This is a bad sign. This is a familiar sign. Something is very wrong when this happens. I started this thing, again, where people are talking and I think they're talking to me, secretly, or talking about me. It is a sign of psychosis. It has happened to me before many times. I went to a cafe with internet access tonight to work on my research paper, which I cannot work on at home because it's so difficult that, if I'm at home, I'll just give up and retreat to my bed and hide. So in public, I cannot do that, therefore, it is best to go in public to try to write. I stared, and stared at that screen, trying to read that article I was using for my paper, and it was futile for a couple hours. During this time, the people talking to me started. It goes like this: two people are conversing, about whatever they're talking about, and I hear them saying messages meant for me, or about me, that are usually insulting and mean. And that used to happen to me all the time, back when I was floridly psychotic, which was usually back before I was diagnosed and on proper medications. In other words, it should, really, not be happening now, since I am on two antipsychotics, one of which has worked well for most of the past few years.

These are bad signs. I am frankly terrified now. I cannot lose my job. I can definitely not afford to lose my job. Losing my job would mean losing my apartment and my belongings and my cats, and my life. I cannot lose my job. I do not have enough income, without my job, to support myself. And I cannot drop out of college again, either, not after all the work I've done for the past four years to get this far. I cannot give that up. I will not give that up willingly. But how on earth I am going to manage to get through things like writing papers, taking tests, and doing presentations in front of a class, right now, is beyond me. I cannot fathom how that will be possible.

I have done my best to get help for myself. Like I said, I saw my doctor last Tuesday. I did not explain well what was going on, so he increased my Wellbutrin, and I know that will not be enough to help with this. So I sat down and wrote down the symptoms I'm having, and then I got an appointment with my former therapist (the one I cannot afford to see anymore), explaining to her that I was in a bad spot and I really needed to talk to her. I handed her my list of symptoms. She read it and said it sounded like a person with dementia, or Alzheimer's and she thought it was really important that she give this list to my doctor. I guess she did. Then the next day, I went to get my injection, and when the nurse saw me, which he does every two week, he evidently noticed something was really wrong and said that I needed to get back in to see the doctor again, right away. I did not think I would be allowed to do this, because if you try to get too many frequent appointments in psychiatry people tend to label you as an attention seeking malingerer, which I am not, but the nurse went and told the people at the front desk to give me an appointment. So I am going back again on Tuesday.

I do not know what the doctor will be able to do for me, but I want to go off Latuda, and I want to be on a different antipsychotic before things get worse than they already are and I lose everything I've worked for. Tonight I met my mom for dinner (no food to eat at home) and she was telling me to just "snap out of it" and that I was probably thinking about myself too much and feeling sorry for myself. I am thinking about myself because my brain is not working properly and it is seriously impeding my ability to live. I do not feel sorry for myself at all. I cannot possibly "snap out of it", and if I could, I certainly would have done so by now! I hate it when people say such stupid, ignorant things, especially someone who knows me well enough that she knows very well there is no way to snap out of this, and she herself has Bipolar Disorder, so she knows some of what mental illness can do to a person. But I don't have a lot of really understanding people in my family. Oh well.

I do have two friends who are therapists or former therapists, and I have talked to them a little, on the phone or in email, even though it would be easier just to never tell anyone anything about this stuff, because I am desperate here, and I wanted to tell someone, since I didn't know what to do. Now that I have another appointment set with the doctor, I know that I need a medication adjustment and I hope that this will help. Something has got to help.

In the meantime, I must try hard to not give up on the most important things, and work as hard as I can to get to work and to school, and keep up as best I can. Because even though there is no way to snap out of it, I have to force myself to keep going and remain out of the hospital. I must keep my apartment and my job and my ability to live without losing everything.

Thursday, October 06, 2011

Myths and Facts About Mental Illness

This is Mental Illness Awareness Week, a time when excellent organizations like NAMI have events around the country to combat stigma and enlighten the populace to the realities of our lives.

One simple thing you can do is use the Bipolar Awareness Day email that was created by the Say it Forward Campaign. Bipolar Awareness Day is October 6th. If you go to their website, Say it Forward will send the below text to every email address you type in. In other words, it's an easy way to educte your friends and families. You can find some more Myths and Facts, especially geared toward young people, here.

Please add some of this information to your blogs, your Facebook pages, your Twitter accounts, and any other places you can think of where there are people who might read it. I am having a really hard time with symptoms right now myself, but it was more important to post about this awareness week, than to talk about myself again. We need to spread the facts!


Myth #1: Psychiatric disorders are not true medical illnesses like heart disease and diabetes. People who have a mental illness are just "crazy."

Fact: Brain disorders, like heart disease and diabetes, are legitimate medical illnesses. Research shows there are genetic and biological causes for psychiatric disorders, and they can be treated effectively.

Myth #2: People with a severe mental illness, such as schizophrenia or bipolar disorder, are usually dangerous and violent.

Fact: Statistics show that those who suffer from mental illness are much more likely to be the victim of a crime than the perpetrator.

Myth #3: If you have a mental illness, you can "will" it away. Being treated for a psychiatric disorder means an individual has in some way "failed" or is weak.

Fact: A serious mental illness cannot be willed away. Ignoring the problem does not make it go away, either. It takes courage to seek professional help.

Myth #4: Mental illnesses do not affect children or adolescents. Any problems they have are just a part of growing up.

Fact: Children and adolescents can develop severe mental illnesses. In the United States, one in ten children and adolescents has a mental disorder severe enough to cause impairment. However, only about 20 percent of these children receive needed treatment.

Myth #5: People who complete suicide are weak or flawed.

Fact: Suicide can be the unfortunate result of failing to get treatment and support. Having a mental illness is painful, and society does not do enough to support and understand these individuals. Stigma is a huge barrier to receiving the treatment that is necessary to live a fulfilling life with a mental illness.

Myth #6: I don't know anyone who has a mental illness.

Fact: According to the World Health Organization (WHO), 1 in every 4 people, or 25% per cent of individuals, develops one or more mental disorders at some stage in life. Globally, it is estimated that 450 million people suffer from mental disorders.*