Jargon

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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.

Review: Clinical Psychopharmacology made ridiculously simple

I am not the target audience for this book.

The book is written for primary physicians who find themselves in the position of prescribing psychiatric medications. That purpose can be seen in the distinctions drawn, throughout, between the sorts of psychiatric conditions that can be managed by a primary physician (such as prescribing antidepressants) and those for which referral to a psychiatrist is recommended (such as psychotic depression).

Still, though the book isn’t written for patients or family members as such, its clear, simple presentation makes it a useful reference for those patients and family members who want to get informed about their medications. We purchased a copy to bring to our support group meetings as a reference.

The book is divided into chapters that cover different conditions (e.g. bipolar disorder) or topics (e.g. enhancing medication adherence). There are tables showing the clinical mechanisms and dosages of different medications, decision charts for selecting the appropriate medication for a condition, and descriptions of how psychiatrists decide on their treatments, from when someone with depression may get referred for therapy alone and when medication is needed, to which medications are appropriate for which symptoms. Case studies discuss how a psychiatrist may adjust treatment depending on the response of the patient.

It’s a good book that can help take some of the mystery out of why your psychiatrist may be making the decisions he or she is making.

 

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.

What Does it Take to Make a Diagnosis?

There are a couple of people who sometimes respond to my threads who don’t like it when I say we shouldn’t be calling people mentally ill just because we don’t like them or act in ways that we don’t like. I think it is time for me to outline what is required to make a diagnosis:

  • You have to be trained as a psychiatrist or a clinical psychologist. (Most “experts” or the “peanut crunching crowd” are not.)
  • You have to have actually examined the person. This goes beyond watching them on television or reading about them in magazines or newspapers.
  • You have to use proper diagnostic criteria.
  • You must be neutral. Most of the pseudo-diagnoses that I have seen fail magnificently on this score. In my experience, progressives are the worst, but this does not exonerate others including conservatives.
  • You must have the patient’s welfare in mind, not an opportunity to insult.
  • You must avoid stigmatizing people with mental illness who are not anything like the person you are diagnosing. E.g. By saying that terrorists are mentally ill, you are implying that people who are mentally ill are like terrorists. (Research shows that people with mental illness are less likely to be violent than the normal population.

Review: Touched with Fire

Medication. Once you have been on it for a little while, you begin wondering if you need it. Some — like me — fiddled with the dosages. Others stop taking it at all. Those with an artistic temperament, especially poets, don’t like seeing their most valuable kind of intelligence stripped away from them so that exercising their craft becomes harder. Because Art is more important to them than their relations with their families and friends, they step boldly beyond sanity and give themselves over entirely to their illness — until life becomes unmanageable.

It is understandable why people seek to go back to mania, particularly those of us with an artistic bent. Personally, I found writing poetry came easily to me. I not only had the focus, but I also had the sense of association that one needed to choose words to convey specific, charged meanings. If I had had a lover afflicted with the same, my output of love poems would have been enormous.

We all think we are brilliant in mania, but a great many manic artists are at best banal. A few like the poet Robert Lowell needed mania to keep an edge in their poetry. Others like Shelley sought out doctors to get help quelling their mood swings. These famous names — along with that of Vincent Van Gogh and many others — tempt some to

Touched with Fire steals its title from Kay Jamison’s classic book of the same name. (Jamison isn’t mad. She appears as herself in the movie at one point, desperately trying to set one of the characters straight on the issue of whether to take his meds or not.) It tells the story of two young people who meet while locked up in a psych ward. Like many such relationships, there is a wind storm of shared stimulation that transcends sex and common love.

They are bad for each other. They sneak down into the basement of the ward in the middle of the night to talk, write, and make art together. This nightly rendezvous makes them wildly orbit each other, like two Kuiper Belt objects stuck in mutual admiration. When they are separated, they grow wilder at first, then crash into depression, their bodies digging out craters of morbid, energy-less, angst. When they get out, they stop their meds again and head out on an extended road tour which nearly costs them their lives when he drives their car into a river.

Both Katie Holmes and Luke Kirby deserve praise for their portrayals. She is the intellectual, the one who retains the ability to reason while he is the wildman who chants rap. It is Holme’s character who eventually sees the light; Kirby’s cannot resist bipolar disorder’s attraction. Griffin Dunne puts in a great performance as Kirby’s much maligned father whose bipolar wife abandoned the family. He and Holmes’ parents show part of the damage that unrestrained mania can have on families. Kay Jamison is a surprise appearance, as the goddess to who Kirby and Holmes turn when they must confront their mania. It is clear who understood Jamison’s message better in this confrontation. Jamison is often portrayed as an apologist for medications by anti-psychiatrists, but here she makes the case that too much medication is a bad thing and cites her own experience.

Touched with Fire gets it right. Nowhere have I seen the excitement of mania so brilliantly exhibited. We’ve needed films like this just as we have needed the recent Infinitely Polar Bear and Homeland because they tell the truth about us and show that we are human. We are not Jasons — we are children of the light.

If you miss it in the theaters, rent the dvd.

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