Something I wrote when I got out of the hospital

I was angry that I had been hospitalized. I didn’t understand why they thought taking me away from my family was a good idea and why they couldn’t have called someone when they couldn’t handle me.

My family of origin thought that the time I spent on the computer contributed to my illness and didn’t want me to go on. I typed up this outline of how I would like them to treat me, but they dismissed it and were just upset I had been on the computer.

I am not sure if this has anything worthwhile. It was right after I was diagnosed and I was still very ill. I made some sweeping generalizations and I don’t think people need a manual to talk to someone with a diagnosis,

my first first thought was to edit, but I decided to leave it as is. If this bothers anyone I can edit or remove it. Mainly I am just surprised I was well enough to write. I was pretty symptomatic.

 

HOW I WOULD LIKE TO BE TREATED
Introduction:
I. I can control my behavior with the guidance of professionals
A. You can not cause reactions I have, like the paranoia that led to my hospitalization, but if we had asked for guidance from a professional he would have told us that relocating someone in that condition often leads to paranoia.
B. Trying to modify my behavior without asking for my input makes me feel paranoid that I am being controlled. I am willing to discuss an issue that troubles you with my psychiatrist, therapist or support group.
C. All I expect from my family is to listen and be understanding. I appreciate how helpful everyone has been.

II. I have an illness
A. I know under other circumstances it would be wonderful that I am spending more time on myself, but pointing that out while ignoring that the underlying reason is because I am unable to do many things because of my illness, is hurtful to me.
B. I can not just cheer up or snap out of it. I can take my medications and follow my Dr’s orders.
C. Once my illness is under control, it may be helpful to remind me if I seem a little more irritable or anxious, but right now that is expected with a mood disorder while they try to find the right medications and they take effect.

III. Realistic Expectations
A. I don’t know what are realistic expectations for me yet. My Drs seem to feel I will be able to return to working, driving and taking care of my daughter and son.
B. Please don’t compare me to others. There are some things that are too stressful for me.
C. I have high standards for myself, and I like my life the way it is, when Ii’m healthy

IV. The psychotic episode was a traumatic experience for me
A. I don’t want to discuss the thoughts, because I am afraid it may trigger another episode
B. That was the scariest experience i’ve ever had
C. I will work through the anxiety and paranoia with my therapist, but I do still have to recover from being psychotic and hospitalized.

V. I hope we can all learn something from this experience
A. I think there is a less traumatic way to get help. Many people wouldn’t willingly go to a locked psychiatric facility, but they would go to the Behavioral Health Unit of a hospital
B. I do worry about our family members on SSRI drugs without mood stabilizers, zoloft triggered mania in me.
C. The difference between an obsession and a passion is if it is interfering with the rest of your life. I am trying to use this time to remember what is really important.

Conclusion:
I will treat everyone as respectfully as my illness will allow, and I expect to be treated with respect in return. I understand that you may be afraid, I am too, but my therapist thinks there is a good chance  never have another psychotic episode.

HOW I WOULD COMMUNICATE WITH A PSYCHOTIC/ PARANOID PERSON
Introduction:
I. When I was in this state I regressed to a child-like state
A. Explain any changes clearly and in advance
B. Emphasize any key words and make sure the person is listening
C. If you think they are hearing voices, written communication is probably better than verbal. I tune-out some things but I pay attention if key words are emphasized either by talking louder or writing and circling key words
.
II. Include the person in any plans
A. People with schizoaffective disorder are resistant to change
B. Plans made without their input may increase paranoia
C. Offer to go to psychiatrist appointment with them, if they seem to tune out sometimes, and discuss having them sign release of medical information.

IDENTITY VS ILLNESS

Introduction: It can be difficult to distinguish between the individual’s true identity and those behaviors that are due to the illness

I. I have some traits that I consider part of my identity that are not highly valued in our society. I want to treat my illness but not give up who I am. Some of these traits for me are:
A. passive
B. stronger written than verbal communication skills
C. sensitive

II. There are traits of the illness that seriously impair my life and I need medication, coping skills, and support to deal with these. Some of these are:
A. Paranoia/Anxiety
B. Impulsiveness
C. Irrational Thinking
D. Isolating

III. There are some things I may enjoy that others may not understand, but it IS normal behavior
A. long baths
B. Solitary walks
C. Reading
D. Computer Interaction

Some things I wouldn’t want to hear
A.i want the old you back. I am still here, hiding behind this illness
B. You need to do this I don’t take orders and I prefer to take advice from professionals (others may vary on who they trust)
C. You are being too emotional. i do understand the sentiment, but I can’tc ontrol how I feel

If it feels good, don’t always do it

This is one that took me a looooong time to learn.  When I am symptomatic my biggest issue is usually psychosis, and sometimes it feels good.

People are following and filming me because I am special. I have secret skills. People communicate to me through code because it would be dangerous in person. Sometimes I think people are angry at me, but other times i think they like me.

For awhile after I was stable I would miss the “good” times when it felt good and I felt special. I feel like I didn’t hurt anyone but myself.

One day I absent-mindedly asked my husband what was the hardest part of our marriage. I thought he would say when the children were infants. I don’t even know where the question came from. His answer was 2003. That was the year I had my first psychotic episode.  It hadn’t really hit me until then how my being ill effects other people.

I have been good about taking my medication, but it was always for myself. I don’t want to get stuck in a bad state of mind. Now, I do my best to keep healthy for my whole family.

Cults, Witches and Mental Illness

When I was 15, one of my brothers, who was 21 came home from college because he wasn’t well. He would sit and stare and do nothing for awhile. Later he would start talking but he said strange things and acted bizarre. He could be generous but was also unpredictable. I feel bad now because I was afraid of him for no real reason. He scared me because he seemed unusual.

My parents tried to figure out what had happened to him. He seemed fine when he had left home. They suggested maybe someone slipped him some drugs but settled on that he had been brainwashed by a cult at college. That his new girlfriend had brought him into the cult.

Of course, there was no cult, but the story grew. I was told not to speak to certain neighbors as they were part of this cult. My father didn’t believe in mental illness or psychiatry. He thought the hospitals were like the one in “One Flew Over the Cuckoo’s Nest” and discouraged my brother from going.

They also accused people of being witches. It was like mental illness was contagious. It was scary and confusing living in that home.

It can be difficult to be the sibling of anyone with a chronic illness. All the time and attention was on my brother and I felt ignored. My older siblings moved out and i just had my younger brother to confide in. I felt everything was strange at our house and didn’t have any friends over. My brother felt like every family has their own issues and we weren’t that unusual. I think he was able to roll with everything easier than I did.

Sonya Sones wrote a book of free verse “Stop Pretending, the day my big sister went crazy” about how she felt as a sibling, that I read as an adult and could relate to. I didn’t want to be home. I stayed out and used alcohol, other drugs and later sex to escape.

My brother didn’t get treatment except when he would get picked up for 3 day observational holds. This started in 1979 and it may have been easier to be taken in. He would be yelling or saying he was some famous person and the police would take him to a hospital. They said he had paranoid schizophrenia and put him on anti psychotics. Not Thorazine, but similar. All they did was slow him down. So, then you had a slow moving psychotic man. He knew he was not acting normal, so he would imitate people around him, which was even stranger.

The last time he was picked up, it was in a different county. They tried lithium this time. It was 6 years from when he had originally come home. Everyone told me it was like magic. He was back to his old self. I don’t know what his diagnosis was. Maybe bipolar, or schizoaffective like me. I was looking forward to seeing him. But, when I visited him, he wasn’t well. He was edgy and nervous. My mom said they had to adjust his medication, but she was waiting until Monday ( I think I came there on a Friday night). My brother took off and we didn’t know where. He had been talking about hiking at Yosemite. On Monday I got a call that he had fallen at a waterfall at Yosemite and died. No one knows if it was a suicide or accident. People do fall there.

Recently I was talking to my oldest brother and he was saying that he wished there was the information then that there is today. I thought he meant support, but he then said that we would know it was a mental illness and not a cult. I was perplexed that he had believed that. The 1980s weren’t exactly the dark ages. I have had to let go of a lot of anger towards my parents for what I now feel was dependent adult abuse by not getting him treatment, and all the time he thought they were right.

Lori- An Intro

I have schizoaffective disorder which technically is like bipolar I with psychotic features except I have had psychotic symptoms with and without mood episodes. Simplified it is the moods of bipolar and the thoughts of schizophrenia, or the best of both worlds.

Michael Crawford has a great series of articles on schizoaffective disorder at PsychCentral

http://psychcentral.com/lib/living-with-schizoaffective-disorder/0001564

I had a psychotic break in 2003 when I was 39 where I was having auditory and visual hallucinations. I thought my parents were going to harm me. I ran away from them on a road trip (they wanted to take me away from my children who were 2 and 4 at the time) and  I ended up in a county hospital on a 72 hour hold, or 5150.

I don’t know if I got better and then relapsed or if I had one very long episode with periods of lucidity. It took me about 9 months until I wasn’t psychotic or heavily sedated. I had times when I was doing very well mentally. But, there were a lot of times where I wasn’t.

I started thinking my therapist was sending me messages through the media and that I had a special skill to decipher these messages. I thought I had been split into multiple personalities and later had tests to rule out DID. I do not have that disorder.

I do have depersonalization disorder. It has more to do with anxiety. I tune out when I get too anxious. I will lose part of a conversation and be startled when it is over, but I don’t go anywhere. I also have trouble reading a wall of text so I make a lot of paragraph breaks.

I was very distracted and overprotective of my children because I was worried someone would harm them. I cut off contact with people, relatives, I didn’t trust. I was convinced people were using mind control and everyone was either in on it or clueless. At one point I was hospitalized. I am not sure what I was saying or doing. I thought i was there for research and de-programming. They changed my medication but I downplayed my symptoms. I thought they already knew everything. So, I left as symptomatic as when I came in. That was in 2005.

I don’t remember the year well, but I was pretty delusional. I thought people were sending me messages. I realize now I was hearing their voices, too, but I didn’t realize that at the time. My psychiatrist put me on a different anti-psychotic, abilify. I decided to see someone else. I was afraid I would get hurt in his office. I saw a different psychiatrist who was a lot less compassionate but who raised my anti-psychotic and over time the delusions lessened.

I did a day program, where I didn’t fit in. Partly because of the language I used. I really don’t know the proper way to say I have a mental illness or diagnosis or brain disorder or I’m batshit crazy without upsetting someone. The psychiatrist there changed my diagnosis from bipolar I to schizoaffective, bipolar type, because I was having psychotic symptoms with no mood component. At that point, the psychotic symptoms were my biggest issue.

After the messages stopped, I felt lost. I had no one to guide me, to entertain me, to keep me company. I tried to explain that to a therapist and she suggested I made the whole thing up because I was lonely. I wish socialization cured mental illness. I thought maybe they were mad at me or bored. Why would they leave. Logically, they left because the medication was working, but it was hard to challenge the belief they were real. I still have doubts. I have to put them aside so I can go about my day, but I wonder.

 

Mental illness wasn’t new to me. I had a brother, he passed away at 26, who had an undiagnosed mental illness. I will write more about that next time.