How do you know what’s working is working in the highest degree possible? You can’t know absolutely that the medication you’re taking for major depression or bipolar disorder is the best for you, and that drives me nuts. Whenever I’m feeling better — right now, for instance — I tend to get greedy: But I could be feeling so much better than this, I reason. Because getting better always involves a gaining of perspective, it invariably follows that, getting better, you look around yourself, see the devastation that the disease has caused, and think, I have to run from this as fast as possible. That’s when you start questioning your medication choices. Are they doing enough? How happy am I supposed to be? What’s my baseline? Am I getting better quickly enough to gain some ground, to gain some momentum to get me over the next hurdle? Because getting better isn’t good enough. What’s well? Greedy thoughts again. It can only be measured by time, how much time you get to feel better. Quality of life questions come into play — is my life so much better than when I was depressed, or am I just fooling myself into feeling better about things? I tend to forget about stressful questions, like how I’m going to do my taxes now that I’ve set myself up as an LLC, and just begin to float, so thankful that I’ve Gotten Better. It’s like a vacation: don’t bother me with the tricky stuff, I’m feeling better and I’m going to hold onto this sensation for as long as possible. Sensation. That’s what it feels like, like a strange sensation, a rare emotion, this smoothness of mood, and I’m so sensitive to it that it only takes a good morning to make me think — hope — that it’s going to be the way I’m going to feel for the rest of my life, or at least for the rest of the day. And I start to wonder, again, is this the best I can possibly be? I make resolutions, plans, for how to maximize my time feeling this way. I’m going to start this and that good habit, I’m going to be like a better person from now on, I’m going to show myself a better time. Better and better. I suppose this is hypomania expressing itself again, or I’ve drunk just the right amount of coffee this morning, who can tell? I just want more. Now I’m thinking that I should be more self-sufficient. Wait — that’s not the word. I’m just thinking that I shouldn’t be mentally challenged, mentally ill, whatever you want to call it. I’m just tired of it, so I’m not going to be that way today. I’m going to be well today, and get some work done and be happy, or at least normal, average, level, sane.

This post – http://www.milligramsblog.com/2009/11/23/the-best-street-sweeper/
- plus a few remarks you’ve made about your colleagues at work and
feeling embarrassed in public tell me that your paranoia is more
pronounced than it was in October.

(Oh, if only you and the doc hadn’t decreased the Abilify dosage.)

When the meds aren’t working right you gradually lose touch with the
distinction between events that you do cause and those you do not
(“ideas of reference”). Two months ago, this faded entirely for the
first time ever. At your worst, you were almost unable to go outside
at all, for fear the people in the street were thinking negative
things about you.

Our mantra: ideas of reference. The truth is that almost no one in NYC
pays much attention to anyone but themselves. There’s too much noise,
too many people. They really don’t care who you are, what your job
is, or how you look. It doesn’t even register. There is no one who
passed us in the street today who is now thinking about you, or even
remembers your face. At work, it’s true there’s a pecking order but
your perception of your place in it varies a lot, depending on how the
BP is affecting you that way. So your understanding is often
distorted.

Your fears of not being a great writer, and worries about the pecking
order at work, and also those moments of self-consciousness on the
street are all rooted in the persistent BP feeling of shame. That
emotion and the thoughts that spring from it are entirely due to your
illness; you’re not the center of the world, but neither are you an
embarrassment. You’re equal. You’re my Mr. X, living out his life as
best he knows how. Do that.

Push the shame aside. Trust me. It’s not rooted in reality. You can
discount it.

I thought that post was a very important first step away from the
shame emotion and the patterns associated with it. So, yes, you’re a
shrub. But the point is that every writer starts this way. The
acclaim, the storied title of “great writer,” etc. – these accolades
don’t necessarily fall to the people who have earned them. It’s
better to look for the satisfaction in being the best shrub you can be
– the route to happiness is this way, darling. Please keep going.

Today I thought I might tackle a big topic. The stuff the spouses of
people with any illness – mental or otherwise – are often afraid to
admit to themselves, never mind to anyone else.

As spouse of a sick person, people often expect you to be saintly,
accepting, loving, patient. But I have often been sad, angry,
frustrated, self-pitying, sorry, guilty, confused, furious, and
terrified. All at once. Sometimes for months, maybe years, on end.
Oh, also: overburdened, resentful, exhausted, and fearful of the
future.

His bipolar diagnosis, and the episodes, and everything else, took me
completely by surprise after we got married. I just thought he was a
little depressed, since my husband is amazingly great at pretending to
be OK. And, it turned out, just as frightened as I was.

At first I couldn’t talk to anyone about this. I was too terrified
and angry about this enormously hard thing that had happened to us.
But I’m ridiculously bad at concealing emotions – I’m frequently told
that my face reflects my every flickering thought. (I almost never
lie, for this reason.) So he would see what I was feeling, and
misinterpret it in his bipolar haze, and this plus everything else
severely strained our relationship.

Who to talk to about these negative emotions? At first, and for a long
time, no one at all. Lots of stewing and brewing. After a while:

- Can’t worry my family with this stuff. These days I do give them a
brief overview, but if I go into too much detail I’m worried that my
elderly parents will start treating my husband like he’s insane or a
toddler. Maybe talking to him in VERY LOUD VOICES. Plus, they’re
frantic worriers, and what good would more worrying do my 85-year-old
father, who has terrible back problems, cancer, arthritis, and
glaucoma? None. Also, they’re very religious, and as I’ve learned,
in their case that means negative emotions toward (especially the
male) spouse are taboo. They would prefer me to be saintly.

- No point in telling his family, who are a lot younger, but don’t
want to hear it. I was really disappointed by this, but when I try to
talk to them they cut the conversation off. I think that above all,
they don’t want to accept that their son is ill. Easier to tell
themselves that I’m making it all up. And that if there’s any grain
of truth to what I’m saying, of course exaggerated beyond all
reckoning, then it’s my problem and not theirs. (I’m pretty angry
with them, in case you’re wondering. They’ve been horrible.) They’ve
made it very, very clear that they would prefer me to be saintly.

- None of this can be shared with friends for fear his employers might
hear of it. We live in New York, so we’re professionally connected to
most of our friends.

Who does that leave? Old friends. I’ve lost touch with most of my
college friend because they live in another country. His old friends?
They’re very fond of my husband, so they would definitely prefer me to
be saintly. Just not the right people to tell.

So we’re both seeing therapists. Obviously, he needs to see one, and
I needed an outlet.

Over the past year, I’ve been doing my best to describe my experience
to him, acknowledging all of the above. Because he senses, of course,
how this affects me and what I’m feeling. Better to discuss than let
it brew and continue the misunderstandings.

How do you tell the person you love, who’s unstable and unwell, that
sometimes he’s a huge burden that drives you to tears? By very, very
carefully avoiding blame and accusations, and doing it little by
little. It turned out that this was a really good move, because
that’s how we started working out the compromises and solutions that
both of us can live with.

I’ve seen advice from professional counselors advising spouses to wait
for a stable period to bring this stuff up, but I think that’s really
stupid. “Oh, you’re well, honey. I’m so glad. Now here are all the
negative things I’ve been feeling for the past X months.” What a
great friendship that would be. My attempts at waiting for the right
moment didn’t help us at all.

It looks like the only way we can manage this is by watching for and
recognizing the moments when he can’t work out what’s real and what’s
distorted by bipolar disorder; at those times he has to depend on me
to help him sort it out, which seems to be really helpful. But he has
to be able to trust me for that, and vice versa, so very little can be
hidden between us.

Sainthood is not an option.

Today he woke up in semi-agitated state. It wasn’t bad, but he was
impatient, a bit grumpy, and easily frustrated. His mind is elsewhere,
electricity buzzing through his circuits, and simple household jobs
become projects requiring coaching and extra patience from me.

We had an episode today over hanging a mirror that would have been
hilarious if only we hadn’t been living it. First, it was the world’s
most complicated mirror to hang, with little hooks spaced unevenly in
inaccessible spots on the back. In addition, no lines in our
apartment are plumb, so it was really hard to figure out what
“straight” meant, in the circumstances – straight as compared to what?
And I’m naturally clumsy.

I think it would have been a lot easier if his medication were
working, but it hasn’t been since he cut 5 mg from his Abilify dosage,
so he didn’t have the patience to sit calmly and figure it out.
There’s a crookedly-hung utensil rack on the wall in our kitchen that
reminds me every day that I didn’t handle him well that time. I walked
away and let him figure things out for himself, not wanting to deal
with his temper, but that’s not an option. I have to help.

So we made at least five attempts, dealing not only with the
mathematical problems of measurements but also the obstacle of his
bipolar-induced impatience, which both of us fought in different ways.
We succeeded. There’s now a bunch of holes in the plaster that are
concealed behind the mirror, which is hung higher than we’d like
because we’d pretty much wrecked the wall. But it’s more or less
straight, and the project is done.

Throughout this, like usual when he’s fighting this particular aspect
of bipolar disorder, I had to try to remain calm and optimistic. I
can’t get frustrated because I have to help him fight against the
downward spiral that bipolar disorder would otherwise drag him down
to. In his worst days, back before the medication, before we knew
what was going on, and before I had figured out what my role was in
this battle, this alone could have set him off, perhaps on a two- or
three-day introspective black mood about how nothing was going right
in his life. Now that tendency is not as pronounced, but the thought
pattern is still there if he slips.

So sometimes I hear myself saying the weirdest freaking things. I’m
honestly a bit shocked to hear myself saying, “It’s all gonna be OK,
don’t worry,” and “Tomorrow’s another day,” and “When life hands you
lemons …” Or, worse yet, singing upbeat songs to him: “Everything’s
gonna be alright now, everything’s gonna be all right!” Goofing
around, trying to pull him out of the blackness.

Because, when we first met, I thought that I was the moody,
introspective artist and he was the super stable one, but now I no
longer have that luxury, except when he’s really, really well, which
has only been two months out of the past … well, a very long time. It
turns out that I’m naturally optimistic, and comparatively resilient;
whatever I thought about myself in my 20s was flat-out wrong.

Life does very strange things to you, doesn’t it?

It’s a question I thought I’d answered for myself several times, but it keeps coming up. Because shining a light on it will make it all go away? Hardly. Partly because my current doctor is so disappointing. Mostly because I don’t know what I think about something until I’ve written about it. I write in order to think. These posts are tiny distillations of journal entries that run upwards of 1200 words, most of it more personal that I allow myself to get in here. But why tag myself and my time with the illness? Because it’s still new to me: I was diagnosed in June 2008, after many years of being labeled unipolar depressive. I didn’t blog back then, didn’t think I had anything to say. But this disease, and these drugs, have become so large a force in my life I can’t help but write my way through them toward some kind of understanding. Mostly, I discover questions that have been lurking just under the surface. And if you don’t know the question, then that nagging sense that something’s wrong will tug at you until it pulls you under. I blog about bipolar moods to keep my head above the water line.