Trusting Your Moods with a Mood Disorder

First published Psych Central

https://blogs.psychcentral.com/triple-winner/2017/03/trusting-your-moods-with-schizoaffective-disorder/

I have a thought and mood disorder called schizoaffective disorder. It is similar to bipolar disorder, in that I have mood swings with periods of mania and depression.

When I was treated for my first severe manic episode I was heavily sedated and slowly titrated down on the medications. When I got to a dosage where I was no longer sedated, and my symptoms were under control, I started to feel okay, good even.

 

It scared me. “Would I feel too good?” I voiced my concerns to my psychiatrist and he reminded me I usually have other symptoms that precede mania. I think most people do.

You could go through a list of symptoms and see which ones are typical for you that would be noticeable.

Do you spend a lot of money?

Are you impulsive?

Do you talk fast?

Do you start lots of projects?

A lot of people monitor their sleep. I often have trouble with insomnia, so that isn’t a particularly good indicator for me. One thing is that I get irritable. I am usually pretty mellow, so if I start snapping at people that is a good sign that something is off. My psychiatrist also told me if people are looking at me strangely that is a warning sign. I am not sure if he meant I do strange things or I get paranoid, which I do, and get suspicious.

Isn’t everyone entitled to an off day, though? Sometimes when I am upset at someone, it is for a good reason. A lot of people imagine others think poorly of them, once in a while.

It would help to have someone I trust, tell me if I didn’t seem right. I have trouble with trust, though, when I am symptomatic. I think everyone else has the problem and I am fine. I am working on that, because I know it is important. Otherwise, you can have a great list of warning signs, but deny them. “I’m not talking fast, you are just listening slowly”.

Once you notice these warning signs, what do you do? That is a million dollar question.

This is where it is best to consult with your doctor and find out when they want you to contact them.

It is also good to come up with a  Wellness Recovery Action Plan (W.R.A.P.) to prepare.

It is good to catch things early, but you don’t want to be worrying every time you have a bad, or good, day.

My Family History of Mental Illness

I remember my grandmother in her baggy dresses that covered every inch of her body like the shrouds that covered the furniture when the summer folk had left for the season. My cousin Heidi was surprised when I told her that my grandmother — her aunt — had spent many hours of each day lying in bed.

“But she was always so jolly, so friendly.”

“Yes,” I said. “She could be like that. Like so many of us she knew how to fake happiness.” I do not mean that as a slander. I admire how she could pull herself together despite her suffering and be there.

I know my grandmother loved me. When I was young, she used to get in big fights with my mother for the way she mistreated me. The rows were long and loud — I would go to the very back of the yard so that I could not hear them.

My mother had her own problems: there was a deep-seated meanness in her. She disparaged my grandmother when we were alone together, complaining about what she thought as Stella’s laziness. When I was depressed, she was panicked at the thought that would do the same, so she hectored me about getting a job — any job — no matter how inappropriate or soul-killing it was. Once, when she was in the hospital with roof-busting high blood pressure, I told the doctor about our family secret. A psychiatrist prescribed Prozac. For three months, she was a nice person.

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)

 

A Letter to My Illness

You moved in when I was very young, shoved me into your corner, made me cry and when I cried you caused the kids to laugh at me, taunt me saying “Don’t cry Joel.” Sister Annette told me to buck up, to learn to be a man and hold the tears back. Damn you and damn her. I couldn’t say it at the time. Two years of living under the threat of her ruler, but the taunts were worse, hurt worse. The more they called me names, you and my parents reasoned, the stronger I would become but this practice was flawed. I played alone or with other losers. My mother criticized my choice of friends, calling them slow, hinting that they were retarded. Even among them I lived in a shell and the kids continued to wear at my head, trying to produce the streams of salt water they loved so much to see. I don’t know what brought you to make a home in my head. I don’t know why you made me sensitive to the twist in their voices. Was it the arrival of my two cousins who stayed for a year? If it was, you stayed beyond a year, brought me suffering. I looked at Jesus and wondered what was worse: crucifixion or this hell I was going through? If I was on the cross with Him, it was an absurdity.

Jargon

Maybe we are so accustomed to familiar jargon, we don’t recognize symptoms if they are described in other ways.

I was having some symptoms. I have been doing well for a long time and they frightened me. I was hearing my voice (not a hallucination) but it was repeating the same words over and over. Nothing scary, more like I was rehearsing lines.

I was also starting to mumble the words I was saying. I found that listening to music was good because I started saying the song lyrics and that was better.

I would try to explain this to friends, hoping they would sympathize, and maybe give me some tips to deal with it. Instead they would say things like, “Oh, I’ve done that before” and shrug it off like it was no big deal or “Maybe you are talking to yourself because you are lonely”.

Instead of helping I ended up frustrated, leaving wanting to bang my head against a wall. It was hard. I knew they were trying to be helpful and maybe normalize my experience, but I found it invalidating.

And the more anxious I would get, the worse the symptoms would get, the more anxious I would get and it snowballed. My psychiatrist seemed to understand what I meant and made some changes to my medication. Now, it is getting better and I am getting calmer and it gets better and the snowball melts.

Recently I saw another friend. I told her I hadn’t been doing well, some thoughts. She said “racing thoughts?” I thought, that is the closest thing to what I am trying to describe, so I said “yes”. Finally I found a friend who could somewhat understand.

A Letter to My Children

 

You may have wondered why I am not quite like other moms. I get tired easily and haven’t always been there to play. I haven’t taken you as many places. I don’t know what else, but I apologize

When you were very young, I had a psychotic break. That is when you lose touch with reality. I was thinking strange thoughts, seeing things , hearing voices of people I know, who weren’t there.

It seemed like it came out of the blue. I was keeping to myself and not saying much. I was going to work and your father was with us at home, but no one seemed to notice. People at work asked if I was okay and why I was sad, but that was it.

It wasn’t until Aunt Kim called on the phone. You know she is a nurse practitioner. She recognized that I wasn’t making sense and told Dad I needed to see a special kind of doctor. The doctor is called a psychiatrist. He prescribes me medication.

I went to the hospital for a short time. Leila I know you were worried when I was gone. I am sorry for about that. I want you to have a better understanding so you won’t have to worry if I go to the hospital again.

I have a mental illness. You may be familiar with other words people use, like “crazy”. I am not crazy, but I need medication for my brain to work right. Now, I don’t have those strange thoughts or voices.

I thought I would answer questions, as you asked, but you didn’t ask much. Leila, one day you helped me make a poster for a NAMI (National Alliance on Mental Illness) class. You asked why “I” was making it and I told you because I had a mental illness. You just said “I didn’t know that” and went back to playing. That was years ago. I don’t know if you remember.

And, you recently made me a friendship bracelet that says DBSA (Depression Bipolar Support Alliance). I thought you might ask something when I asked for that, but you forgot what letters I asked for. I love my DSBA bracelet

Jonah, I know you are well aware of my medication. I take you to the pharmacy sometimes. I don’t want you to have to worry that I am physically ill. I recently tried to explain to you, but I fumbled my words, and you didn’t want to hear any more.

I do want to say how proud I am of both of you. Leila, you are so smart, talented and pretty. Jonah, you are so athletic, funny and hard working. I always worried that I wouldn’t give you enough. That somehow having a mentally ill parent would affect you, but you are the greatest kids.

If you have questions, please ask. I know you can imagine things worse than the truth. Jonah, remember when I wore sunglasses inside and you worried I was going blind? I want to be honest with you. I don’t want to announce it to the world, but I don’t want to keep my illness a secret from you.

Mom

What Makes for a Good Caregiver?

When one takes aim at a system of privilege, some jump to the conclusion that you hate the people who stand to gain from that system and have no compassion for their struggles. Caregivers can make it hard on themselves and on the patient. They give twenty four hours a day seven days a week looking after people in severe episode. They neglect their own health. They grow weary and cross from all their over-involvement.

Our DBSA chapter feels that caregivers need their own place where they can talk about their issues and we have provided one. We do not tell them what they can and can’t talk about. We do not ask them to support certain laws or advocate for changes that they do not want. We don’t have a patient monitor the group to be sure that they act according to some unbearable standard of political correctness — people need to vent. We shelter them from people who may have an ax to grind (I have heard about other groups where caregivers were roasted over hot coals by angry patients) and who don’t appreciate how hard it is. We encourage them to talk to peers who know what it is like. We always ask them how they are feeling when they come to our patient-family support groups, reminding them that they, too, are important. We feel that their mental and physical health is as important as the patient’s and we tell them so.

I’ve been hit with some innuendo from some online caregivers who imply that I don’t care about the mentally ill. What I believe they are really saying is that I don’t care about caregivers. I do. It aches when I see a caregiver overburdened and I do my best to relieve that. Many have been the times when I have had a couple in a group and told the patient that she or he needs to realize that her or his manic state of mind is creating an extremely stressful environment for her or his spouse. How does this make me a foe of caregivers? I think much of the misapprehension stems from my opposition to Murphy’s Law, which I have explained at length elsewhere. It scares caregivers to hear me talk about sane privilege– just like it scares white people when we are talking about black people — where we who live with mental illness are left out of decisions about our treatment.

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What Happens in A Support Group

A few months ago, a spokesperson for a “mental health advocacy organization” likened support groups to appendectomy patients performing surgery on one another. I said nothing at the time, but the remark and all the errors it entails have led me to consider how my support groups help me.

The claim that support groups seek to replace medical treatment is erroneous. DBSA South Orange County, like many other support groups of its kind, has issued a disclaimer indicating that our peer-run support groups are no substitute for a doctor’s care. This fact by itself defeats the glib assertion made above. We don’t try to cure people of their depression or their bipolar disorder. There are people with better skills for doing that than we.

What we offer is a safe place where people can talk about their struggles with the illness. Doctors and therapists know how to treat, but they don’t know what it is like to undergo treatment. They don’t encounter stigma. They have not experienced the catastrophic loss of community that can happen when one is diagnosed with a mental illness, when friends and family members run away.

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Angeline

profound

I found this on Queer Secrets, an LGBT Tumblr blog devoted to posting the “secrets” that people send in.  I know what it is like to feel this way about someone, at least to a degree.  My person, however, was a boy.  I will give him the pseudonym Angeline here, because like with Genevieve, I want him to have a pretty name.  Angeline also means “angel”, and he was that to me also.

He was my angel because he was my friend.  I often teased him, and he’d retaliate by chasing me around the yard we all called a playground.  When he was given detention, I skipped my recess to be with him.  When I found out he self-injured, I told Davina (another pseudonym) what was going on.  Davina was the head teacher there, and she told Angeline’s mother, Kaleela (pseudonym), what was happening.  I was known as so close to Angeline that one day, I asked Davina what was wrong with him.  She looked a little hesitant, but led me outside.

“You know that Angeline had a brain tumor when he was very young, right?  Well, that tumor affected his brain in certain ways.  Much like your mother’s stroke affected her.  As a result, Angeline cannot always tell appropriate behavior from inappropriate behavior.  He needs special help for that.  He also has a hard time with reading and writing, just like your mother.”
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