“Could it be the medication?” -My mom

My parents have always been against me being medicated. When I was 17 my dad refused to sign for me to have medication, so I had to wait till I was 18. And then I had to be financially supported by them, but my mom reluctantly agreed after a GI specialist told her I needed to see a psychiatrist (that’s a long story for another time)

Whenever I would say I feel [insert negative feeling here]. My mom would always reply, “Are you sure it’s not the medication.”

Well one night I came home from a support group. I didn’t have the willpower to eat with the group afterwards. I told my mom this as I shaking. I was stuttering. I leaned against a chair and told her I needed to eat because I hadn’t eaten all day (and plus, I only ate a couple grapes and stuff the day before).

I was having really bad anxiety, and anxiety doesn’t let me eat. It doesn’t let me eat until I feel sick and weak. It doesn’t let me eat until I am seeking professional help for the extreme weight loss. It doesn’t let me eat because when I try, I will vomit.

My mom started suggesting foods, I looked in the cabinet. And it came over me. Just the thought. 

I ran into the bathroom and my mom got up and followed me, “Oh Quinn.” It was her disapproving tone. It was as if she was saying, “Why are you letting yourself get so worked up over literally nothing?”

I thought she would understand because my dad has anxiety. But as it turns out, our anxiety is very different. He gets mad and he might overeat. I get withdrawn and I might vomit.

My stomach was empty, so I was spitting up bits of stomach acid. I was crying.

My mom held my hair back and asks me, “Do you think it could be the medicine you’re on?”

I laughed. In between my gagging and spitting, I laughed at her.

I bitterly spat some bile into the toilet and told her, “No, it couldn’t be.”

“How do you know?”

“Because I quit the meds.”

That was a changing point for her. When I was done, we sat down, and she gave me a piece of toast to munch on. I couldn’t eat the whole thing. But I told her the truth- I thought the medication (Zyprexa) was making me depressed- so I quit it. But as it turns out, the medication was the only thing holding my anxiety back. And quitting it cold turkey without a doctor’s supervision was very dumb of me.

It turned out to be a very symbolic moment. After I explained all this, she offered to go get the medicine for me, so I could take it right now. I nodded, told her where it was, and took it when she returned.

My anxiety levels went back to normal over the next day or so. But there was another occasion where she showed that maybe medication isn’t the worst thing for me.

During my recent manic episode, I told my mom I just could not take the increased dose of Zyprexa, I just couldn’t make myself do it (because part of me wanted to stay manic). I told her the doctor suggested I give the pills to her, and she could dose them out to me. But I hate when other people have control over my medications, as I feel I know better than they do, so I didn’t give her the meds. As a result, I only took the increased dose on two different occasions, and it made me very depressed. I felt bad walking into the psychiatrist’s office and explaining that I just couldn’t take that dose, I was manic (but I was unable to explain that part of me wanted to stay manic), and it made me too depressed to handle. Ultimately, I asked my psychiatrist just to put me on something new. And she did. And that’s what I’m working with right now.

Medication compliance is difficult for some people struggling with bipolar. Sometimes we think we are all better and quit them because, “We don’t need them anymore.” When in fact, it probably means the meds are working, and quitting them will just cause problems. In other cases, we are annoyed by a side effect or some other problem. We think we know better, but do we really?

I think it’s a lesson a lot of us learn the hard way.

-Quinn

 

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

“It gets better”

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*Trigger Warning- Suicide* The realization I describe in this post made me feel very suicidal when I had it several months ago (I am fine now), read at your own risk, and please be safe.

“It gets better.”

The most depressing realization I ever had about being bipolar was when I read a 17 year old girl’s account about her bipolar. She says she sat on the edge of her bed with pills in hand, ready to swallow them all. But instead of taking her life, she went to her mother’s room and sought comfort.

She ended it by saying, “It gets better.”

(I wasn’t very inspired.)

We’ve heard that a million times- “It gets better.”

And it does get better.

Before I read her post, I would say that too, “It gets better.”

But dear sweet little 17 year old girl, if the doctors say you’re bipolar. Then you’re sick for the rest of your life.

I was your age when I found myself holding a noose, what stopped me was that I couldn’t find a place to tie it up at. A month later, I was put on medication, and for what seemed like the first time in my life- I was happy. I was just like you, trying to tell everyone how things “can get better.”

And then two years later at the beginning of winter, I slit my wrist open and the consequences led to a hospitalization which led to me getting suspended and much more. Suddenly I realized how deep I’d fallen again. And then about a year later, I had a job and I was doing well in college and I was so very successful. And I was saying, “Things do get better.”

And then another year passed and I fell and broke my wrist. And with my wrist, my mind followed suit and I found myself more manic than I ever knew I could be. I made many plans to vandalize, let a man film me doing a sexual act, popped pills like candy, and more. That winter I spent my days half cracked open. Then school started again, and I was too far gone. I dropped all my classes, and took the time off to heal bone and brain.

When I broke my wrist I was told, even with the surgery, that it would “never be the same again.” But what’s scary is that that same phrase can be applied to my mental health. That manic episode changed me, I will “never be the same.” So when I read that 17 year old girl’s account of how everything gets better, I looked at my own life. At the cyclic nature of my disorder.

And I realized something terrifying.

It may get better.

But it can, and probably will, get worse again.

It’s a pattern, don’t you see?

Good to bad, bad to good, good to bad… and so on.

They say bipolar is a chronic, life-long illness.

And they say that for a reason.

-Quinn

Psychiatric Hospitalization- The feeling, not the story.

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I’ve only been hospitalized once, although there’s been multiple times when I needed it.

I always had a curiosity about what it’d be like in a ward.

The background story is: I had/have issues with self harm. And when it was at its worst, I cut myself deeply. Deep enough to see the tendon and to be rushed to the ER. Long story short- my parents found out and asked what they could do to help me. I told them I needed outpatient care and they said okay. I called the local psychiatric hospital and they said I could come in any time for a psych evaluation so I could start outpatient care.

I went in for my evaluation and left 5 days later.

The hospital had decided that I was too unstable/unsafe after my self harm incident, so they required me to stay. I remember sitting in the evaluation room, staring at the window. It was dark and all I could see was my reflection. I don’t know what I felt. It was a mix of wanting to cry, wanting to run out of the place, wanting to scream that they couldn’t do this to me. But mostly, I just felt defeat. Eventually a lady retrieved me, asking if I was okay. She informed me I could go back to the lobby. I ran back in there and hugged my friend, sobbing as I told him they weren’t letting me leave. I could feel everyone in the room staring at me. But at this point, I was certifiably “crazy” so who cares, right?

I won’t go into the details of my psych ward stay. Instead, I will tell how it felt for me.

At first, it was terrifying. It was nighttime when I was admitted, and I told them I wouldn’t be able to sleep since I had a nocturnal sleeping cycle to begin with. I sat, alone, in the one room where you could just hang out. I sat with a puzzle, and tiredly tried to put the pieces together. My mind felt both overwhelmed and slow. Like the puzzle, none of the pieces were coming together.

When everyone woke up for breakfast, I had to face the other patients. I had no idea what to expect of them. A million different versions of “crazy” went through my head. And yet, I didn’t expect them to be … so much like me. They seemed normal, for the most part. But what stood out was how friendly they were. I was invited to sit and share my story.

I grew comfortable in the hospital. I knew my parents must be upset, I knew that my dad was probably having anxiety over it. Anxiety that would make him angry, that would make him yell at my mother. And what about my mom? How would she feel? Scared? Or would she feel like it was completely unnecessary? Would she be mad too?

But honestly, those questions barely crossed my mind. Because I knew I was safe from them. I knew that while I was in here, they couldn’t really hurt me. My dad wouldn’t yell at me. They’d awkwardly visit at visiting hours. Just to clarify, my parents have never been physically abusive. But I do fear their tempers. Mostly, I fear the control they have over my life since they’re completely supporting me through college.

It didn’t matter though. I was hospitalized, they couldn’t do anything about that. Plus, I could control all communication with them. I felt safe. Everything was so routine, we’d wake up and take our pills. Then we’d eat breakfast and go on a smoke break and go to group therapy and then a smoke break and then group therapy and so and so forth, all day.

I was able to talk about my problems and I was able to bond with other people who were going through exactly what I was- not necessary a “mental crisis” but more like we were all stuck here, and that brought us together.

I put the pieces of that puzzle together with the help of the other patients. We’d sit and talk and figure out the puzzle together.

On maybe my 2nd or 3rd day in the ward, I was given terrible news. News too long to explain right now. But news that shook me and turned my life upside down. I felt as if the walls of safety had been broken down. All it took was two police officers and suddenly I didn’t feel so safe anymore.

You see, the world had stood still for me. During my stay, nothing could hurt me. I was impermeable. The outside world could do nothing to me. But those police officers proved me wrong. The outside world could come in, it was just me who couldn’t leave.

I stopped socializing with the other patients, I curled up in bed. Sobbing until there were no tears left. At once, I felt like the hospital was both a prison and a sanctuary. I couldn’t leave, I couldn’t take care of the responsibilities the police officers had informed me of. But still, I was safe from myself. I was safe from my family, friends, everything.

I felt the desperate need to leave, I had things to do- immediately. But I was so sick from the news that I wanted to stay. And the staff agreed- I needed to stay. My 5150, or a 72 hour forced hospitalization, was changed to a 5250, where they could keep me for longer. I stayed an additional two days.

We weren’t allowed on phones during group therapy, that was our punishment for not going. But I was given special permission to use the phone to sort out my personal life because it simply could not wait. I was given a room with a phone. And I sat down and made all these phone calls, with the occasional call to my mom or to my friends to tell them what was going on.

It was a mess. I felt very stressed out and my memory of those hours I spent on the phone are best compared to the way you feel after crying- broken, defeated, but mostly tired.

Very, very tired.

My time in the hospital was ruined by those two police officers. Had I been able to stay non-interrupted, I imagine the stay would have been rather pleasant. For the most part, I actually enjoyed my stay. My fellow patients were all friendly and their company was desirable. The food was decent enough. I got to smoke cigarettes every now and again. Group therapy was fun to me. Doing the puzzle in our spare time gave me something to obsess.

The puzzle let me forget about all my troubles. About the predicament I’d gotten myself into. I loved that puzzle.

I still remember walking out of my family therapy meeting, eyes puffy and red, sniffling from the tears. And when I arrived to my fellow patients, my support group, they handed me a puzzle piece. I looked at the puzzle and realized they’d left me the last piece. I probably cried, I don’t remember. All I knew was that these people understood me, they understood how important this puzzle was to me. And they had saved the last piece for me.

Ultimately, I loved the hospital. It was a safe place for me. Many of the patients reported they’d been transferred from other facilities, and they said those places were nightmares. I guess I was lucky.

I’ve wanted to go back. To remember the safe feeling, to know everything I needed was taken care of, and that all I needed to do was work on making myself better. But you can’t forget the locked doors. Even though I enjoyed the hospital, the patients and I would scheme on how to act to get out sooner. Once you’re in there, you want out.

On the smoking patio, there was a giant fence that had a green canvas blocking our view out. It rose far above our heads, but I would gaze through the little holes at the corners. A glimpse of the real world, I could even see plants if I looked hard enough. But I also saw another gate.

It is bittersweet. There is no good way to summarize my stay there because it was such a conflicting period. On one hand, I was safe from the world. But on the other, I wasn’t. The world was still moving even though mine had made an abrupt stop.

I needed to be in the hospital. I needed that experience- all of it. I needed the feeling of security. And then feeling that security ripped away from me. I needed to learn that I could withstand all of this.

I needed the hospital to give me a place to experience all my emotions… while keeping me safe from them.

-Quinn

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

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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

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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.