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.

The Day of My Diagnosis

This is the text of a speech I delivered on September 22, 2016

Twenty two years ago, when I was almost thirty six, I woke up one morning and said “Lynn, I’m sick.”. I had been in bed for weeks. I’d lost my appetite. We made an appointment with the psychiatric department at Kaiser Redwood City and by the end of the following week I was on Prozac.

Prozac was amazing stuff: I was cured the next day. My psychiatrist was surprised but because i had never told him about my other symptoms — the irritability, the paranoia, the rapid speech, that time in college when i had gone up to San Francisco with my girlfriend and come back with my girlfriend and they were two different people — he let things be. In time, our insurance changed, so I came under the care of a nice gentleman in Menlo Park who also had no clue about my other symptoms so he made no changes. Then we moved down here and I found a new psychiatrist who also made no changes because I never told her about my other symptoms either.

Then one day the Prozac stopped working, so she changed me over to Effexor. I found myself in a burning darkness. Two things happened. First, an editor was taking forever to get back to me on a story. Second, I overheard Lynn saying something about me to her sister. My irritability merged with my despair. I went for a walk in Whiting Ranch, called a friend — who found my anxiety funny for some reason. So I texted my last will and testament to Lynn, making special note to leave some possessions of my father to my nephew and asking her to be sure to be sure to get my poetry published after my death. Then I sat down on a sycamore log, studied my veins, and prepared to bread my glasses.

My cell phone rang. It was my psychiatrist. “Are you all right?”.

“No,” I whimpered. She told me to go down to South Coast Medical Center. Lynn picked me up and drove me to Laguna Beach

After spending several hours in the emergency room getting my chest x-rayed because I was wheezing, they took me down to the behavioral unit where I left Lynn at the door. They took away my shoelaces and my glasses, then showed me my room.

I came out after an hour. “I am diabetic,” I yelled. “I need my blood sugar medicine!” I can only imagine what was going through their minds — “this guy was brought here because he was preparing to commit suicide and now he wants the medicine her takes to keep himself alive” — but I am sure they took careful notes.

The next day when i went to group i was the happiest person there. Everyone was miserable except for me who was laughing at the fact that he had attempted suicide and lived to tell about it.

After group, I waited around until I was called into a consulting room. A psychiatrist joined me there. He took a few minutes to read over the notes the ER doctor and the nurses had made. Then he looked at me and asked in a very gentle voice “Had anyone ever told you that you were bipolar?”

And that is when my recovery began.

No matter how beautiful your strategy …

Today was the day of the Meeting of the Minds, the largest mental health conference in Orange County, California. It is an annual conference sponsored by the Mental Health Association, for patients and family (“consumers”), clinicians, and first responders.

This year, we had a table. We arrived at 7am and set up. We were quickly flooded with people making the rounds (memo for next year: bring more literature). By the time of the first session, another member of our chapter had showed up. I went to the session while Joel stayed at the table, just for the first session, he said, but when I got back just before lunch, it turned out that he and the other member had been busy at the table the whole time. I took the table after lunch so they could go to their favorite sessions.

Here is what the talks were like (the ones that I attended).

First session: I went to a panel discussion on Recovery, with the panel coming from a local Wellness Center. The session unfortunately started late, as some people were held up by unexpected traffic, but we did get to hear all four speakers. The first two speakers had suffered horrific child abuse, and then grown up to struggle with mental illness. The second two had come from more supportive families, but faced other troubles and, again, mental illness. But whatever their different paths, a common theme was that recovery involved (besides meds) the support of others, and then giving back that support to others in turn. Some quotes from the last speaker, just for an example:

Instead of praying every day to God for my health, I prayed for my death. What turned it around was NAMI…. I could believe in people the way that people believed in me…. four years sober … believe in people who have mental illness.

Second session: Two psychiatrists from the John Henry Foundation spoke about “Schizophrenia: Cognitive Testing to Enhance Diagnostic and Treatment Options.” “An ab workout for your brain.” Schizophrenia involves positive systems (delusions and hallucinations), and negative symptoms (flat affect and poverty of thought), but also problems in cognition: processing of information, flexible thinking, and memory. There are medications for positive symptoms, and even some medications for negative symptoms, for for cognitive deficits, the speakers said, you need something else. The John Henry Foundation uses cognitive testing to evaluate people’s abilities in seven domains: Processing Speed, Attention, Working Memory, Verbal Learning, Visual Learning, Problem Solving, and Social Cognition. Once your weak areas are identified, you can build them through simple cognitive exercises, done daily. We got taken through some games that tested us in each area. (I appear to be way better at processing speed and working memory than at visual memory.) These exercises can be useful not just for people with schizophrenia but for anyone. Even neurotypical people can use them to build their weak areas, and people with other DSM diagnoses, such as ADD or borderline personality disorder, can use them (for example, exercises that help with attention for people with ADD, and meditation or exercises that help with emotional gating for people with borderline personality disorder).

As I didn’t go to the afternoon session, the final talk I heard was the keynote address right after lunch, “Dream with your Eyes Open,” by Eric Arauz, who went from the childhood trauma of seeing his family unravel when his father became mentally ill, to repeating his father’s mental illness, to, unlike his father, finding his way to recovery. Now he is the president of the Trauma Institute of New Jersey, and also an impressive public speaker, going by his keynote address. I got a copy of his book for our chapter, which I’ll read and hope to review later. My title comes from a line in his talk that struck me: “No matter how beautiful your strategy, you have to eventually look at the outcomes.” For Arauz, that outcome involved moving from what he calls a “Chaos Narrative: No Map or Destination” to one that rewrote his story in a more positive way.

 

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.

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.

Crossing Zones

Travel is one of the greatest dangers facing someone with bipolar disorder. The majority of medical evacuations from overseas happen when someone enters a manic or a psychotic state. I am no stranger to these issues: I have noticed that when I cross the country to attend DBSA conventions, the combination of the excitement of the convention and the messing up of my sleep cycles — especially when I am compelled to wake up earlier — often conspire to pushing me into a slightly manic and obnoxious state.

So when we made plans to visit my brother-in-law in Senegal, I took the time to confer with all my doctors but especially my GP and my psychiatrist. In addition to the necessary shots such as typhoid and yellow fever, we bought medical evacuation insurance for me. I also discussed my plans at length with my psychiatrist, particularly since I would find myself not merely in one different timezone, but four — Salt Lake City, Paris, London, and Dakar. Together, we hatched out a plan which involved my taking an extra tablet of carbamazepine while I was gone. Two days before my departure, I began taking the increased dose — two first thing in the morning, one with dinner, and one at bedtime.

Not even the hint of mania afflicted me. I kept my temper, didn’t laugh too much, kept my bearings, and didn’t engage in compulsive spending. We stuck to our plan in London and Paris, not doing too much in a day and always discussing our expenses as we went along.

When I came back, I felt so good on the new dose — who in their right mind misses the rages? — I asked my psychiatrist if I could stay at that dose. She let me under the condition that my drug and white blood cell levels were closely monitored at least in the beginning to be sure that they didn’t destabilize me. Four months after my trip, I continue to do well.

If you live with bipolar disorder, you can learn this from my trip. First, talk to your psychiatrist and consider raising your dosages of your mood stabilizer. Second, take pains to adjust your sleeping schedule. For two weeks before I left, I starting setting my going to bed time an hour ahead of when I usually woke until I was getting up at Paris time, about mid-afternoon. When I arrived at Orly, I felt fine. When we arrived in London that evening, I went right to sleep and woke up shortly after dawn. I wore a sleep mask and ear plugs to minimize disturbances. I used an alarm clock to wake myself and it worked. I jumped out of bed and I enjoyed each day. My regimen kept my mind stable. My sanity never wobbled.

In transition

This coming Tuesday will make two weeks that I have officially been unemployed. It will also make my first in person job interview (after four phone interviews, one being the one that got me to the in person interview). On the whole, I think I’m getting a good response so far. It does mean, though, that most of my focus has been on keeping myself going with job search activities. There’s a post that I’ve been meaning to write here, that has nothing to do with the job search, and I’m not sure I’ll get it written until I’ve found that next job. So I’ll talk about the job search.

Parts of it come naturally to me; those would be the parts that involve organization and research. Other parts don’t; those would be the parts that involve being extroverted and putting myself out there. But I have to keep going with all of it. That means striking a certain balance between getting out there, and putting in, well, hours of job search related activity every day, and finding things that give me respite. Like reading, and singing.

What things give you respite?

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

Dealing with anxiety over the holidays

I wrote another article for “The Mighty” that I wanted to share

http://themighty.com/2015/12/7-tips-for-surviving-the-holidays-when-you-live-with-anxiety/

At my house, we celebrate both Christmas and Hanukkah. The kids love it; twice the parties, more gifts and more fun. But for me, this means twice the stress and more anxiety. And while most of the severe symptoms of my mental illness are under control, it can be harder to manage my anxiety as the holidays approach.

But I’ve learned little adjustments can make a huge difference. Here are some things that help reduce my anxiety over the holidays:

1. Take two cars to a holiday party.

It’s easier to relax when I know I have an exit plan. If my husband and I take separate cars to an event, I know I can leave at any time.

2. Find a “safe space.”

When we’re at a holiday party or family gathering, I make sure I find a quieter room or place outside to get away from all the noise. Or I spend time with the animals if there are any pets. It just needs to be a space where I can recharge.

3. Give yourself permission to walk away from upsetting conversations.

There’s always that one person who wants to argue about politics or compare achievements. I used to dread holidays mainly because of these uncomfortable interactions. Now, I know I don’t have to listen. I can walk away or not participate.

4. Keep it low-key.

In my house, we don’t feel pressure to entertain guests or worry about buying the “perfect gift.” There’s so much going on already, we don’t want to add to the stress by holding unrealistic expectations. We try to keep it low-pressure and enjoy what we have.

5. Know it’s OK to say, “No.”

Around the holidays there are lots of opportunities to help others, but if making that batch of cookies or running that errand is going to cause me too much stress, I have started saying no. The holidays are a time to give, but it’s important to know your limits.

6. Accept help.

On the other hand, if people do offer me help, I’ve learned it’s OK to accept it. I try to remind myself they wouldn’t ask if they weren’t willing.

7. Remember to actually enjoy yourself.

As much as there are parts about holiday gatherings I don’t enjoy, there are things I like. Certain foods, smells, people and seeing the children’s excitement. I try to enjoy those special moments — it keeps the holidays in perspective.