Reminded of Algernon

Not sure what triggers so proceed with caution

I have 3 brothers and 2 sisters. I used to have 4 brothers. Pat passed away over 30 years ago. For a long time I didn’t speak about him. Everything upset me too much. I speak some now. But, it is I sad story and I don’t want to discourage people. Different times, different people.

Pat had a breakdown at 20 when he was at college. He came home a different person, first he would just stare. Then he was obviously mentally ill. He claimed he had been brainwashed by a cult,.he was also the soccer player Pele’ and other people. He was unpredictable and scared me. He would try to act ” normal” mimicking others, which was even worse. My father felt Pat could just stop it if he wanted and would yell and even hit him.

my father didn’t believe in mental health treatment and the only help my brother got was when he was picked up on 72 hour holds. They would give him typical antipsychotics, this was the late 70s, and send him home. He would be psychotic and sedated which just made his differences more apparent.

then, in 1985 he was picked up in a different county. They tried a different medication. lithium. Everyone told me he was back like his old self again. It was as close to a miracle as I could imagine. But, when I went to visit he wasn’t well. He was looking at me suspiciously. He was talking about the bible excessively and was hard to understand. My mother said they were having trouble finding the right dosage.of medication.

he took off that night. I never saw him again. He went to Yosemite. He fell at a large waterfall and died. Suicide or risky behavior? I am not sure.

I have all kinds of mixed up feelings. Mainly guilt. That I didn’t try to understand more and be closer and not so afraid, that I didn’t do more to get him some kind of help, that I am fine and he wasn’t.

and just sad that he was fine for a little while and then started to go back into the psychosis he had been trapped in for years.

(About how the title: my children were talking about ” Flowers for Algernon”. I know the story is about intellectual disability, but the idea of improving and then going back to the old state hit me as similar and sparked the memories)

 

What could go wrong?

FDA asked to consider adherence sensor on Abilify

http://www.modernhealthcare.com/article/20150910/NEWS/150919997

http://www.proteus.com/press-releases/u-s-fda-accepts-first-digital-medicine-new-drug-application-for-otsuka-and-proteus-digital-health/

Proteus Health, located in Redwood City CA, along with Tokyo based Otsuka Pharmaceutical Co. have a new drug application that is ready for review by regulators determined by the FDA.

The new drug is embedded with an ingestible sensor. When the medication, and sensor, reach the stomach, it sends a signal to a patch the patient wears externally. The information can be sent to physicians or caregivers with consent.

The sensor has previously been approved in a placebo taken along with a medication.

The goal is to help with medication compliance. All well and good up to this point. But, what is the first drug they choose? Abilify, an atypical anti-psychotic. It isn’t always taken for psychosis. It can be used as an add-on for depression and other ways. But, it is also used to treat psychosis.

Some, not uncommon, delusions are that:

you have sensors embedded, that your medicine has been poisoned or tampered with or that people are tracking you. This is to be taken by consent, but personally, I think they chose a bad medication.

I don’t know what is wrong with injectable abilify? That would be my choice.

 

How to Talk Listen to a Mentally Ill Person

The mentally ill person is not a child. I have had the experience of would-be helpers who treated me so. When I attempted to describe what I needed, they argued and belittled me for needing help. I felt very alone and one result was that I stayed away from the church where this person was not only a member, but an officer of sorts. It was hard for me to treat him with charity. I turned my back when he greeted me afterwards because I could not stand his hypocrisy.

We are sensitive about being patronized because of our condition for the same reasons that African Americans are sensitive about race. No one wants to be excluded on the basis of a condition that he cannot help. No one wants his condition denied. No one wants to feel cut away from the body politic. What we want is for people to take us seriously whether or not we are in episode.

Many of the problems that people have with the mentally ill have to do with communication. Those who wish to help (and those who do not want to help) believe that the objective of interaction is to get the mentally ill person to follow a treatment plan or pull herself up by her bootstraps or realize that it is “all in your mind”. (“Have you tried not being depressed?”).

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Reality Testing in Virtual Reality

Social media has become a large part of my daily activities. My friends live in my computer. I am married and have a family and do interact in the real world, too.

One thing about the Internet is things go so fast. And then you can’t take back that email or tweet. I can go off on tangents in 140 characters or less.

It is easy to feel like you are being cyberstalked. People do hack computers or follow people ‘s online activity, but paranoia can make you feel like it is happening, also.

Stress exacerbates my symptoms so it really is not a good idea for me to stay up getting tense in debates. I like to discuss ideas and facts just not argue.

I used to get messages through media. They would be hidden in written words, spoken, sometimes visual. They stopped years ago. But, I would search for clues. Everyone thought the computer was making me crazy, but the messages were everywhere.

My delusions are a lot like the Truman Show where I think everyone else is acting, filming, with product placement even. That I just can’t break through that 4th wall. Delusions are different depending on culture. I have heard voices. They weren’t mean. They would guide me and humor me. I actually missed them, I felt lost when they stopped.

My Bipolar Face is Not MY Face.

It is Worldwide Bipolar Disorder day (okay so this post is a couple minutes past midnight, but close enough). From what I’ve gathered, we are supposed to show our faces.

But I will do no such thing. My anonymity is essential to my life.

I severely cut myself late November two years ago. I was rushed to the ER by my roommates where I was stitched back up. I was lucky I didn’t hit any major blood vessels. If you look close enough, you can see a large vessel right above the scar. But it was deep enough to see my tendon. At that time, I was in throes of some sort of mood chaos. I hadn’t been diagnosed with bipolar yet. I later found out that my therapist was desperately trying to contact my psychiatrist to get me off those medications immediately because they were making me worse.

Friends would come over for game night, which I didn’t participate in, but I did do my best to be as distracting as possible. I would get into these moods, where I’d laugh hysterically, ramble away. I’d lose myself. I thought I was just having a good time. On occasion I would clean my fish tank with such focus, I demanded perfection, not a drop of dirt (even if some remaining dirt is good), it had to be pristine.

I would prepare myself for studying by taking a knife to my skin. It soothed the thoughts, it soothed the chaos. And when I lost focus, when my friend tutoring me got too frustrating, I would cut myself again to regain focus. Cutting myself worked better than any stimulant I’ve ever taken for focus.

One night we had friends over and I was lost in this person who wasn’t me- but a “better version” of me. She would jump around and entertain everyone. She had the idea to play shirtless Twister. So all the guys did. And then she decided to test her roommate, to see if she had the guts to do it too. She did, with some encouragement. The whole idea was stupid, pointless. But this version of me was so desperate to do something wild, and nothing ever seemed to be enough. My friends were too tame, and that was best for me, even if I hated it.

Another night we were returning from a store and pulling into the campus parking lot when a police officer holding a shotgun stopped us. We were informed there was a gunman on campus and we needed to go elsewhere until he was found.

I found this hilarious.

We went to our friend’s place and I was energized. I was excited about the gunman. My friend’s roommate was rather cute and in the military (which was a big bonus to me), so I tried to flirt with him, I wanted to drink with him. But some part of me was too scared. Some part of me knew I was acting way out of line, and unattractively so. So instead I tried to calm down by laying on the couch and fiddling with my knife, particularly pleased with myself because it made my roommate nervous.

When we were finally cleared to return to campus, I plopped down on my roommate’s bed. I started laughing hysterically. And tears began to stream down my eyes. Between fits of laughter I asked them if they wanted to know something hilarious. They said sure. I laughed as I cried, and hiccuped the words, “My therapist tried to force me to go to the hospital today… Isn’t that hilarious!?!” I stopped laughing, I wiped the tears off my face, and left the room. My friends exchanged concerned glances.

My bipolar has never been the most extreme. Perhaps because I am so young still. The trip to the ER was a changing point though. My parents received the bill, I asked to go into outpatient treatment, and the treatment center decided I needed to be inpatient. Sometime in that process I was diagnosed bipolar, I don’t even remember it.

The paperwork says I was crying and laughing during my initial evaluation. That I said, “I don’t care if I die. And I have 17 knives at home.”

I later lied and said they misheard me, I only had 7- not 17.

I actually had 21.

In any case, the whole experience was a wake up call. I still can’t believe the way I acted. The way I told everyone cutting wasn’t a problem, that it was fine, and I was safe. When the reality is that less than an inch made the difference between life and death for me.

The school suspended me for cutting myself on campus. I was told I’d be arrested if I came on campus. I was evicted, with a police escort.

But that’s another story.

I think that perhaps I was in a mixed episode for most the beginning of the second year of college. I was so up but I was also so down. I would cut as punishment. I would cut to focus. I would cut if I was happy. I would cut if I simply felt like it. I did it constantly. And the therapist saw what was coming when he tried to force me into the hospital. He saw that ER trip coming.

I know I talk a lot about self harm. For me, it goes hand in hand with bipolar.

I was doing well with abstaining until my last episode, which was this last winter. I had nothing to lose, so I was cutting myself again. My legs still show sleek red lines going in every direction. The mania wanted me to.

With me, there are no neat, clean cut, straight lines. I go to town, slicing and dicing with anger. There is nothing calculated or calm or in control about it. Look at the scars, you’ll see.

The mania also wanted me to vandalize things. I felt as if no one understood what I was feeling. I would wake up fine, but I’d quickly degrade. For some reason, I was possessed by the need to make it worse. So I would take too much Ritalin and I’d drink coffee. I left the house to go to therapy when I came up with a brilliant plan. I was going to go to a popular mall and cut words into the bathroom stall, then cut myself, smear my hand with blood, and leave a bloody hand print right there on the stall wall.

I needed people to know. And not just know- but feel. I was terrified of myself, I couldn’t slow down and I couldn’t stop myself. I wanted someone to walk into that bathroom stall and feel the terror the hand print was sure to elicit.

People had to know.

So I went to a sporting good store and bought a cheap utility knife (since all mine had been entrusted to someone for safe keeping). But the traffic on the freeway caused me to miss my opportunity. I had to go to the psychiatrist and I didn’t have time to stop by the mall.

The idea lingered in my head but I never did it. My therapist said she almost involuntarily hospitalized me for my urges to vandalize.

Another idea I had was to go to the local park and carve words into the trees. It was daytime, so I went for a walk. I casually strolled around the park, stopping to examine trees, trying not to be too suspicious as other people were there. I did hide behind a tree and barely scrawled the words, “Help me” into a tree, but you’d never be able to tell. But I had plans… plans to come back later that night when it would be empty and leave large, blatant messages in prominent trees. I specifically wanted to write, “I’ve gone mad.” Or something like it. And then, in a hidden spot, where only the adventurous would see, I’d leave a secret message, “Help me.”

But when I made an excuse to leave that night, I decided to go to the bookstore before the vandalism. I wandered around the bookstore, I tried to focus on the titles of the books but my vision blurred far too much. I wandered around, paranoid that everyone knew I was not okay. The bookstore overwhelmed me. There were too many books, too many people, too much of everything. So I drove home, back to that park. But I detoured. I saw the Christmas lights. And I drove down a street that was heavily decorated. The euphoria washed over me. I drove around for however long, just admiring the lights. (I’ve never been impressed by Christmas lights, by the way). In the end I decided trees were just too beautiful to ruin with my knife.

Another day it was raining but I was desperate to go soak it in. I told my mom I was going for a walk and grabbed an umbrella. But the rain stopped and I found myself at the park alone. I didn’t know what to do, I didn’t want to carve the trees because it was my good knife (that I paid a lot of money for). So instead I found the swing set. And I popped in some earbuds. The euphoria was intense. But I also had paranoia, so I tucked my knife into my hand, positioning it so I could pop it open in a second and … well, you know.

Of course this was ridiculous, as the closest entrance I had full view of, and an attacker would have to walk across a large open field to get anywhere near me from behind (and I checked constantly).

I could go on about the mania I felt this last winter. It was the first time I knew I was manic. I’m only 21, my episodes aren’t very severe. But I still have many years ahead of me. I know now that my bipolar can take charge at any moment. I had to miss my last quarter of school because I simply went to class high on pills, then I’d cut between classes, and I couldn’t focus. I was just too manic.

I just started my first day of the new quarter. It was terrifying.

I wrote this and it is very disorganized. But that in itself is what mania is for me. It is chaos in my mind.

Mania is a 5’4, 97lb female with dirty blonde hair, brown eyes, an asymmetrical pixie cut, a small assortment of bold ear piercings, and a tattoo on her side rib cage. It is that girl being the life of the party, laughing while crying, cutting herself, plotting to vandalize to make a statement. A girl sitting on her bed, head in hands, her thoughts screaming, “SHUT UP SHUT UP” over and over again, trying to make the whirlwind stop so she could do something as simple as brushing her teeth.

So you want to see the face of a bipolar person? Well I can’t show you that. My career goals don’t allow me to make my disorder public, just yet.

But I’ll compromise. You can see how I intended to look during my vandalism urges (minus the sunglasses).

While some may brave a bare face… my true bipolar face, is not my bare face.

This is what bipolar looks like on me.

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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