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.

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)

 

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.

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.

Travel and Stress

We’re back from our big trip, and we have had a week to recover from jet lag. On the whole, the trip was great. But since this is a blog about mood swings, I’ll talk about the stressful parts, and dealing with them.

For me, the more neurotypical member of the family, the main stress of travel is the fact that I have a lifelong phobia of vomiting. Travel offers triggers for that. I’m going on a plane. What if I get air sick? I’ve never been air sick, but there’s always a first time. So I put sea bands on my wrists, and take Dramamine, and bring ginger candy to eat, just in case. Then there’s the opportunity to get sick in other countries. We saw a travel doctor, and got all the cautions: Don’t drink the water. Don’t take ice in your drinks. Don’t eat fresh vegetables. (When you get a tasty looking salad brought to the table along with the cooked meal you ordered, just eat the cooked food and give the salad a pass.) And we got antibiotics, which came in handy when my husband slipped, had a sandwich with a bit of lettuce and tomato, and got sick.

For my husband, who has bipolar disorder, there’s another source of stress: time changes. We had a couple of long days when we barely got any sleep because we were travelling for, say, 24 hours. He got an increase in his mood stabilizer to ward off mania, and did his best to get onto a good sleep schedule quickly.

Then there are the ordinary stresses of the trip: He lost a crown in London, and needed an emergency dental visit. We got pickpocketed in Paris, at the cost of 80 euros. We almost missed one flight (but convinced them to let us check in an hour before departure, though they said at first that check in was closed). And there are a large number of things that must not be lost, meaning inevitable searches to find one or another of these things.

Finally, there’s the return home, with all the ordinary household inconveniences while we’re still jet lagged.

On the whole, I think we did pretty well. Seeing the travel doctor beforehand helped, and having my husband talk with all his doctors and his psychiatrist ahead of time also helped.

 

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.

 

Articles on dealing with people with mental illness-review

I never know whether or not to open links to articles on how to deal with someone like me. I have problems with it from the get go. I am an individual, not one size fits all. I feel like i am being talked about without my input.

I recently braved reading:

4 Ways to Find Out If Your Partner Is Using Their Depression as an Excuse for Controlling Behavior

http://everydayfeminism.com/2015/07/depression-and-partner-abuse/

She then lists four things controlling/manipulative people sometimes do. You don’t have to have depression to do any of these things:

Do They Make You Spend All of Your Time with Them?

Do They Threaten Suicide When You Have Disagreements?

Do They Make You Feel Responsible for Their Mental Health?

Do They Trivialize Your Problems in Comparison to Theirs?

Keeping you to themselves is common in abusive relationships

I had an ex-boyfriend with no diagnosis threaten to commit suicide if I didn’t get back together with him

Many co-dependent partners worry their partner won’t be okay if they leave.

I don’t think trivializing others problems is solely something done by the mentally ill

I really don’t like the title or premise of this article. It could just be signs you are in a controlling/abusive relationship.

I do think there are some topics in this article that could be good for family members.

We are taught to take all mentions of suicide seriously. But, what do you do if it seems manipulative? I don’t know and that would be more meaningful for me.

How do you leave someone with a mental illness (or other condition) when you worry about how they will be on their own?

I felt the author used a provocative title/subject to grab readers

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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Review: Love and Mercy

I’m always a little on edge when I sit down to watch a movie about someone living with mental illness, particularly if it is a true story. Did the actors, writers, and director get what it is like to live with mental illness or did they make a caricature of it? Did they romanticize it? Did they put a hockey mask over the face of the sufferer and an ax in his hand? Is it another ECT scene out of One Flew Over the Cuckoo’s Nest? Or do we get the truth?

Bill Pohlad’s Love and Mercy had me worried about romanticization before I saw it. I dreaded that he would render the illness of Beach Boy Brian Wilson as cute and fuzzy, something that would make us wonder whether we were too cruel when it came to the mentally ill. It did do that, but there is a right way to go about it and a wrong way. The wrong way declares that there is no such thing as mental illness; it diminishes the impact that the illness has on those closest to the sufferer and suggests that the illness that afflicted the likes of Brian Wilson was little more than a personality quirk. Pohlad and his cast did it the right way: it acknowledges the severity of Wilson’s illness, but also turns a harsh eye towards his guardian/therapist, one Eugene Landy and his sadistic oversight of the musical great. Paul Giamatti’s performance was so to the T that when Wilson watched the movie, he experienced a severe dissociative state where he believed for several minutes that Giamatti was Landers come back to haunt him.

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