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.

To the Couple Who Asked About Bipolar Disorder

I occasionally submit posts to The Mighty, a webpage for people with disabilities. They have a section for mental illness.This is my latest submission about a DBSA meeting I went to last night.

You wanted to know information about your son’s bipolar disorder. At first you asked specific questions about the illness and I did my best to answer them. You told me about your son and I was impressed with his accomplishments and sorry to hear where he was at right now.

One of your questions stuck with me. Is there a physical test? Is the diagnosis just based on observation? It is a common question. I wish I had an x-ray or blood test that would show that my diagnosis is real. People can understand a broken arm or diabetes, but not brain disorders.

It was what I didn’t hear that struck me. I have heard parents with children who won’t get treatment, desperate for answers, trying to figure out how to help them get better. Instead, you sounded like you doubted he really had an illness. I could picture you using the “tough love” approach to get him to be more productive.

My mind went back to my own brother. He had a psychotic illness starting in the late 70s. My father didn’t believe in mental illness so he didn’t really get treated. He died young in an act that was either a reckless accident or intentional, I don’t know.

I told you about my brother. I feel guilty that he didn’t have the chances I do.

I pleaded with you to be gentle with your son. The words slipped out of my mouth that suicide is so common. It has been reported up to 20% of people with bipolar disorder complete suicide. I felt like I said too much and second guessed myself when I came home.

Now, that I have had time to think, I am glad I said something. I did not want to make you feel bad or scare you. I have not met your son and I don’t know where he is at mentally. But, you wanted information and that is a valuable piece of information.

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)

 

Turning to others

It’s hard for me to get the words out when I’m having a rough time. I can be pretty vague. I don’t know who to confide in about my symptoms and feelings. I don’t want to be a bother. Some people will offer platitudes or react more than is needed. I have to trust someone to keep things confidential and hope they will not dismiss me.

I was traveling recently and started having a few breakthrough psychotic symptoms. I didn’t even want to talk to my husband about them. It just takes a lot of effort and it never seemed like a good time.

I contacted a talk line and they told me to think “positive thoughts” and that negative things happen when you think negatively. I am not sure what I was looking for; maybe some reassurance I could see how things go over the next couple of days. Whatever it was, positive thinking wasn’t helpful for me. I think it was just some of the stress of traveling because the symptoms stopped on their own.

So, if I do turn to you, it means I trust you. Not that I expect you to have all the answers. But I do need you to listen. Sometimes talking doesn’t help. Other times, I just need someone to reassure me I will get through it.

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.

Words Have Power

Words have power. They can hurt but they can also heal.

This is something I read and modified from the dbsalliance website. I also made a youtube video

People living with mental illnesses often experience symptoms like feeling hopeless, empty or worthless. You may want to say something to make the person feel better, but not know what to say. Are there comments you should avoid?

If your loved one is experiencing ongoing thoughts of suicide or is in immediate danger, contact a doctor, got to a hospital emergency room, or call the National Suicide Prevention Lifeline at
1-800-273-TALK (8255)

Remember to take care of yourself so you are able to be there for your loved one. Find support for yourself with understanding friends or relatives or in therapy of your own.

As a friend or family member of someone with a mental illness your support is an important part of working toward wellness. Don’t give up hope.

Treatment for mental illness does work, and people with mental illnesses can and do live productive and thriving lives.

What you say

Some things could be hurtful:

It’s all in your head

We all go through times like this
Look on the bright side
You have so much to live for
What do you want me to do? I can’t change your situation
Just snap out of it
You’ll be fine. Stop worrying

What could help:

I understand you have a real illness and that’s what causes these thoughts/feelings
I may not be able to understand exactly how you feel but I care about you and want to help
When you want to give up, tell yourself you will hold on for just one day, hour, minute-whatever you can manage
You are important to me. Your life is important to me.
Tell me what I can do now to help you
You might not believe it now, but the way you’re feeling will change.

World Bipolar Day

Today is March 30. It was Van Gogh’s birthday. It is also world bipolar day. A day to bring awareness to decrease stigma and not feel alone.

I haven’t done much this year. I tweeted on the hashtag #worldbipolarday a picture of me I have used in the past, with a list of other things about me than my diagnosis.

I am facilitating a DBSA group today. It seems appropriate.

A few things I don’t like to hear about my mental illness

I re worked some of my earlier writing

I used to only disclose my mental illness to a few people because I was worried about the reactions I would get. I had already received negative responses when I had to stop working. But not talking about my mental illness limited my ability to converse. It was hard to think of things to talk about. I was afraid my secret would get out, so I’ve slowly been opening up. And although being open about my mental illness makes me feel free, it comes with a cost.

Here are some of the worst things people have told me after I’ve opened up about my mental illness:

1. “I want the old you back.”

First off, I know I’ve lost a lot because of my illness. Jobs, friends, income, time. I feel that loss. I want those things back, too. But, I’m realistic enough to know time has moved on and I have to deal with where I am now. But, more importantly, I’m right here. I may act strange sometimes or think unusual thoughts, but I’m still the person I’ve always been. Accept me as I am now.

2. “You need to…”

I’ve been given a lot of unsolicited advice. But I’m actually doing pretty well at the moment and don’t need suggestions. But, even when I was more symptomatic, I didn’t need people to tell me what I should and shouldn’t do.

3. “You’re too emotional.”

I’m not sure what that means. I have a mood disorder and changing moods come with the territory. When you point out I’m “too emotional” or “too sensitive” it’s completely unfair. I can’t help how I feel.

4. “You don’t look like you have a mental illness.”

I don’t know what to say to that. I think it’s meant as some sort of compliment, but it negates all I’ve been through and denies something that I know is real.

What I dislike the most is being talked about like I am not even there.

All I expect from others is to listen and be understanding. To treat me like a whole person and not something that needs to be fixed. To feel loved and like I matter. That’s all I need.

Cards

I was going through some things, and I found a card from a friend. It was a nice home made card. I don’t remember when she gave it to me.

It got me thinking of my most memorable card. I can’t find it. Probably threw it out. I wanted to forget that time.

When I had babies people were able to visit at pretty reasonable hours. They brought balloons, cards, flowers.

When I was in the psychiatric ward, it was totally different. Restricted visiting hours and limited visitors. No flowers or cards.

They did have different groups and activities where I stayed. I was in an art class and they had us make cards. I made a get well card for myself.

Lori,

I hope you feel better soon

From,

Me

With a design on front

Diagnosis changes

My first diagnosis was social anxiety. That still fits, but when I started having more severe thought and mood symptoms it was obvious there was more going on.

Originally that was diagnosed as bipolar I. That never seemed to fit well. I would read the textbooks and they didn’t describe me well. I would go on-line or to in person support groups and I would feel like I didn’t quite fit in.

After a long period of psychosis where I had been in different mood states (including neutral) my diagnosis changed to schizoaffective disorder, bipolar type (as opposed to depressive type).

In a way this was a relief. My symptoms fit more neatly. It just made more sense. My psychiatrist told me he had always held that diagnosis as a rule-out, it just took him a long time to decide. Every doc since then has agreed. I was told the prognosis is the same.

It can be scary to have any mental illness diagnosis, but I think anything that starts with schiz can be particularly so. I just want to say that nothing changes with a label. You are still who you were and you can get more focused treatment.

When I was first reading up on mood disorders I came across a set of articles on schizoaffective disorder by Michael D. Crawford. I wanted to scream. this is me. No one cared, because it was a different label than bipolar. But, I went back to it when my diagnosis changed. It had moved to Psych central. I could still relate to it.

That was in 2006. I am sure there are other articles and blogs and some will speak to others differently. I do have a goal to make a webpage like that. Something that might help someone else who is floundering through.