RealMental

Liz Spikol posted a very awesome video about depression advice over at her blog yesterday. It makes light of that oh-too-familiar advice that we get from well-meaning people who have no clue what it’s like to be depressed.

If only laughter really were the best medicine. For now, I’m sticking with my Celexa.

I’ve been told to “snap out of it”, to turn up some music and dance around my living room, and to quit taking things so seriously by people who couldn’t understand why I was debilitatingly depressed or anxious.

They meant well, but they had no idea what they were dealing with because they have never experienced it. Their advice only served to make me feel like more of a failure because I was unable to control something they thought was so easy to solve. It made the gulf between me and what was “normal” even wider.

What’s the worst, most ignorant, or most insulting advice you’ve ever gotten from someone in regards to your mental illness?

At the end of September, when the antidepressant I was on made me go wonky, I asked my doctor to refer me to a psychiatrist.

 And then I waited.

 And waited.

 And waited some more.

 Because, while I usually have nothing but praises to sing about the Canadian health care system, when it comes to mental health care, if you don’t have a knife to your throat, you’re shit out of luck. If you want to get in with a psychiatrist for the first time, you have to wait three to six months, no matter how bad you are doing. As long as you’re not actively suicidal or homicidal, you wait.

 I waited five months. By the time my appointment came up, I was feeling fine. My drugs were working and I wondered if I even needed a psychiatrist after all. But, given my family history, I decided to go anyway. It couldn’t hurt, right?

 Wrong. Oh, so very wrong.

 The psychiatrist, whom I shall call Dr. R, came very highly recommended from my family doctor. I had told her, “I want someone who will allow me to be an active participant in my own care, who will listen to me.” She said this woman is fantastic and very compassionate. I adore my family doctor and we get along quite well, so I trusted her opinion.

 My appointment was three weeks after I had major jaw surgery, and only one week after I had my jaw unwired, so I was still on some painkillers and having problems getting enough calories into my body. That didn’t really help my emotional state going into the appointment.

 However, I was determined to have a positive attitude and to be open-minded. Sitting in that waiting room, I tried not to be nervous and instead psyched myself up (hah), telling myself: this is something I’m doing to make my life better and ensure I am going to be healthy long into the future.

 I quickly figured out that this appointment wasn’t what I was hoping it would be, no matter how much positive energy I tried to throw at it. The moment I told Dr. R my family history and the adverse reactions I had to the Effexor and Wellbutrin, she decided I was Bipolar II and tried to fit everything I said into that diagnosis.

 I’m not disputing the diagnosis itself; it’s a fair hypothesis, and one that I have considered myself. However, I have a huge problem with a doctor diagnosing a patient within five minutes and then “accusing” her of all kinds of behaviour that doesn’t exist.

As the “interview” (or interrogation, as it became) went on, the two of us got more and more frustrated, and the conversation grew heated. She was frustrated because I refused to just accept what she was telling me about myself, and I was frustrated because she wasn’t listening to me or considering my explanations for my decisions or behaviours.

 And then it just got plain weird.

 Dr. R: Do you ever spend large amounts of money?

Savia: Sure. I have a house. I’m doing home renovations right now.

Dr. R: How are you paying for that?

Savia: A line of credit.

Dr. R: That’s hypomanic, irresponsible financial behaviour.

Savia: But I’m making an investment in my home, and my house value has quadrupled in the past seven years.

Dr. R: Going into debt for any reason is hypomanic.

Savia: What? But it’s not just any debt. It’s good debt.

Dr. R: There is no such thing as good debt.

Savia: But… [about to explain how her sewer blew up and also how the energy efficient renovations were eligible for a $3,000 government grant, which would pretty much pay for them, not to mention the savings on the monthly energy bills.]

Dr. R: [Cuts me off] The only way it would be acceptable for you to go into debt for home renovations is if you were selling your house and would get the money back right away.

Savia: [looks at her like she’s on smack] I guess we’ll have to agree to disagree on that one.

 Note how she didn’t even ask how much money I make or how much the home renovations cost or any other details that would have explained why I was going into debt for this project? It was all about absolutes. And let me just say, if going into debt for any reason makes a person bipolar, I guess the majority of North Americans have this disorder. Maybe that’s why it’s so hard to get in with a psychiatrist?

 After that, it quickly went downhill. She snapped her questions at me and cut off my answers. Any time I tried to explain or elaborate on one of my answers, she said, “You’re rationalizing your behaviour.”

Um…no…I’m just trying to give context – the grey answer to a question that she tried to make black and white. Because life isn’t like that – it’s all about the shades of grey.

 At the beginning of the appointment, I was quite succinct in my answers. But then, she would jump in and fire several more at me, obviously looking for more context. So, I started giving more thorough answers. She never smiled and she cut me off a lot, which made me really nervous and uncomfortable. I started talking faster and being less concise. At one point, she stopped, tilted her head, smirked at me and said:

 Dr. R: You’re talking fast and circumventing the question. That’s hypomanic.

Savia: I’m nervous!

Dr. R: [cutting me off] There you go, rationalizing your behaviour again.

 I’ve lost count of how many arguments we got into in that hour and a half. Our personalities clearly do not mesh, and I could tell that she didn’t appreciate me challenging some of the things she was saying or asking questions to help me understand where she was coming from. We both ended the session thoroughly pissed off.

I was so angry and upset, not about the diagnosis (though that did scare me quite a bit, because I don’t want to have this disorder and I don’t want to have to take mood stabilizers, ever), but about the way she treated me. Her cruelty to someone so vulnerable cut very deep.

 I didn’t sleep at all that night, and then I cried for two days straight and fell into a depression. What if she was right, and all of these things that I consider as part of my personality are just a disease? I thought I knew myself really well, but if this is the case, who the hell am I, then?

 I talked to a few friends who’ve known me through all of the ups and downs, and they said the same thing, “You’re always Savia. No matter if you’re depressed or anxious, there’s still something about you that’s always there and doesn’t change.”

 And they were right. I tried to put Dr. R’s harsh words behind me and take the good out of the appointment. A few things that she said did ring true.

 For instance, when I told her that I don’t have hypomanic or manic episodes, she said that for me, hypomania may manifest itself as anxiety. I found that interesting, and it would fit with what’s been happening to me. She also gave me the signs of hypomania and told me to keep a mood chart for the next three months so I would have a record of my patterns.

 Dr. R said that the current drug mix I was on (Celexa and Wellbutrin together, in low doses) could put me at a higher risk for hypomania and that it would be better for me to be on just one of those drugs, or off them entirely and on a mood stabilizer, my reaction to which would serve as a diagnostic tool.

 She also told me to take Omega 3 fatty acids, which she said is the one thing that has been clinically proven to help with depression and mood disorders.

 So, I did take the good advice she had and used it to my advantage. I went off the Wellbutrin at the end of April and found that just being on the Celexa was much better for me. I started taking Omega 3s, along with a daily arsenal of B complex and Vitamin C, and am amazed at what a difference that makes in stabilizing my mood.

And last, but certainly not least, I am keeping a daily mood blog where I quickly jot my mood, appetite, sleep, spending, menstrual cycle, drugs and sexual interest levels. It takes me two minutes a day, but it has made me aware of some of the factors that affect my mood, which gives me the opportunity to deal with things before they get out of hand.

 And the best thing about the mood chart is that the next time I go to a psychiatrist (in six months, if I can get in with someone else, that is), I will have that record to show him/her. And, hopefully, I can avoid any further nastiness.

Because going to the psychiatrist is stressful enough without having to prepare yourself for a knock-down, drag-out fight with the person who is supposed to be helping you.

Migraines?  Excedrin alone will sometimes work, but I’ve got other pills in my arsenal if I need them.  Arthritis bugging me?  Allergies? Same thing.  There’s almost a pill for each everyday physical ill, or something that works in a matter of days.  Non-medicinal remedies too– more water, less sugar, more walking, less gluten.  The lag time between applying the cure and the end of what ails me is short, and the resolution is tangible.  Hour by hour, I can feel myself getting better– and if it’s not a cure, then at least there are palliatives that can be repeatedly applied to assuage the feelings of not-rightness.

Not so with mood.  Taking your meds, getting enough sleep, watching my carb intake, trying to get out in the sun and to move around some more only help so much.  Positive self-talk, journaling, talk therapy, too.  The distance between what I know and what I feel?  Sometimes it’s a short reach across a small crack, and I can grab hold, strongly, to join the brain and the heart for days, weeks, months.  Other times, that crack is a chasm, miles wide and deeper than imagining, and there’s nothing to be done but hunker down with my darkened heart, and hope that in the meantime, the brain on the other side of the chasm will kick in and figure out how to bridge the crossing.  Right now, the gap is narrowing, something my brain side knows and something my heart side hopes, and my heart side is reaching out, but my heart and my brain are still fingertips away, swiping at each other– I know it’s close, but any contact now is tentative, fleeting, too weak to get me across without making a lunge that I know, from experience, may not get me across.  There’s no quick fix– just a waiting game.

I hate taking pills. I am sick of it. Sick of being sick. Coming off this most recent toxic/allergic/withdrawal bout, I am even more tired that usual of the being tired of it all, the exhausting vigilance Belinda so eloquently described. The clatter of particular pills into the containers changes; the raucous reminder I’m sick, and will continue to be, doesn’t. B vitamin, multivitamin, Omega 3. Lamictal, minocycline. Who knows what anti-anxiety, anti-depressant, anti-inflammatory, anti-anti-anti will be added to the mix? Sometimes my regimen has included so many pills that these little rounds overflowed, and the plain old, boring M-F strip came out of hiding for the lunchtime doses.

Small wonder I forget to take my pills some days, even though I am usually a pretty med-compliant patient. If one little thing disrupts my ritual of morning preparation– wake up late, skip the shower until later, then the pill-taking is shot. I had an alarm on my cell phone for the mid-day pills, back when I was taking them, which I’ve now disabled. Maybe I need to set one for after my weekday wake-up alarm– a “hey, idiot, did you take your pills before you leave the house?” alarm. Because the one in the middle of the day won’t do me any good if the pills are at home, and sure as sh*t, I’ll forget to take them by the time I get home, even when they’re sitting there in plain view on the bathroom shelf, in their rattly, musical lucite rainbow stack. I bought it in those pretty colors so I wouldn’t mind the medical boring reality of it all so much– as if I could make pill-taking HAPPY. Hah. But it does come with extra lids, so I can unscrew one, pop it into my bag for taking after fasting blood draws– or more likely, forget until my alarm goes off. I could take them at lunch, setting my alarm to do so, and carrying my rattling stack in my bag, my very own rhythm section, but I don’t want my maracas reminding me I’m sick every step of my day, and I know I will forget to unscrew and recap just one section every single day. I want to take my pills at home, and spend the rest of the day trying to be functional, to work around, to get over, to move beyond the “did I remember” that I ask myself at least a dozen times a day.

The problem with alarms? You have to live by them, yield the flexibility, the freedwom of ignoring them, or precipitate a real alarm. There’s no sleeping late on weekends, if that means I can’t remember to take my damned pills two days in a row, and then end up a weepy angry mess on Monday morning. The other problem with alarms? You have to remember to turn them back on after you disable them, in time, or learn to tolerate them when they are unnecessary. “Yes, yes,” you say, as you shut that damned buzzer off, “it’s OK right now, thanks for asking.” I could note a little “meds” on my handwritten calendar. I could update my symptoms and mood calendar. (Don’t even get me started on procratinating on refilling the damned pill minder on the same day every week, so that I can be confident Red Means Monday… or Sunday?) Hell, I could start a little gold and silver pectoral or clutch and scratch a tick mark in it every day, wearing my medication memorialization as adornment. (Hmm. Are there any jewelry makers in the house?)

But the best I feel like I can do right now is fill my rainbow maracas every week and leave it on the table, a constant reminder, in the hope I’ll be caught by color as I walk by. That I’ll someday cease to resent the ritual, the attempts to render it habitual, so I don’t think about it, don’t resent it, don’t forget it. Don’t sit for a moment, every single day from May 13, 2005 on out, looking at the palm of my hand, and ruing the ritual, despite the welcome surcease of death-defying heights and bottomless lows.

I’ve been having allergic reactions to lithium and abilify recently, the abilify added after I had to quit lithium, cold turkey. The abilify was even worse, and made me feel really crazy for the first time ever– manic, mixed, unable to concentrate, on the verge of rage. Even my worst depressions never left me doubting myself so much. Fortunately, yet again, my great doctors spotted what was going on at an early stage, and now I am off both drugs and going through withdrawal. The withdrawal’s been more of the same, just only slightly less severe each day, and slightly better after each nap, each liter of water, each massage, as the poisons slowly leach there way out.

* * * * * * * * * * * * *

Mornings are better/a mostly full night’s sleep/or at least two or three chunks of several hours at a time.
When the antsiness is replaced by weird dreams if you’re lucky/bad ones if the ativan and tylenol and benadryl name brand saviors fall behind the poisons.

With your nocturnal naps under the belt of your bathrobe and some light reading from three to five a.m./and a good liter of water to wash down more name brand saviors/I can mostly function well/well/except I have to pee constantly/pace like a tiger in the zoo/clench dystonic jaw and neck and shoulders and hands into claws of rage and rictus of anxiety/I feel like an animal/in a bad way./To talk wildly/drum fingers constantly/shift and squirm in my seat like a kindergartener/to want to run around the table until it’s time to take an early lunch and walk around the building eight times/more pills/more water.

All day stretching your poor sore stiff self as poisons leach through your pores your pee your sweat/I swear I smell like salt all day/all muscles poisoned, protesting, screaming for relief, especially when you are so distracted you miss the next dose signaled by that cell phone alarm you forgot to answer.

Sitting still is bad enough/talking to someone is worse/keeping in the hypomanic bursts of speech/words burbling like water over stony brooks at icemelt’s bursting./It’s worse after lunch because six hours is really all you’ve got before the name brand saviors cease to be so effective and you need a three hour nap interrupted by a ten minute pee and more nap to feel human again and keep your thoughts from running together like hot caramel overflowing the pot, sticking to everything burning hard to peel away taking forever to cool.

Touch your tightened jaw/your knotted neck/use the sensory trick of touch to tame the tensioned parts momentarily/petting/stroking/pressing/smoothing/soreness frantic when will this stop when will I feel better/maybe I should take just half of the dog that mauled me? to ease it?/but you know that will slow it down, stop it, reverse it, increase it, make it longer harder even worse/unimaginable, unendurable.

You know it can be worse/you know you’re not that bad/you’re home, not at hospital/and while you’re hyped stressed bummed exhausted hurting talking and oh it’s all too much at once/but still you see the light at the end of the tunnel/can say, with reason, that mornings are better/tomorrow will be better than today/and you hope pray wish cry weep for tomorrow to come sooner/soonest for those who don’t know can’t know/deny/relapse/refuse to see/to feel/to believe each morning can be a little better.

Mornings are better, at least for me.

* * * * * * * * * * * * *

There was a thought-provoking article in the NYT about the “Mad Pride” movement— about proclaiming our craziness publicly, about being examples of adaptation and function despite it all. Like any movement, any blanket platform, there are lots of threads, some of which are more provocative of thought and agreement and disagreement than others. I’ll try to assemble some thoughts on it next week.

A story from my local paper about a teenaged girl suffering from bipolar and the push in Massachusetts for better funding for youth mental illness treatment.

I mean, not to draw deep meaning from the G.I. Joe cartoons, but really, it is.  Paying attention to my illness, as annoying as it is to have to be that self-aware, is the only way to ensure that I keep myself out of trouble.  And I’m pretty good at that part.  But.  But?

Did you know that taking a B-vitamin complex supplement has been clinically found to elevate mood in people suffering depression, as has exercise?  

Did you know that Omega-3 fatty acids have been shown to increase time between depressive episodes, among people suffering from unipolar and bipolar depression?  I did, but I’d never read the studies.

Did you know that clinical research is tending to show that antidepressants do not affect the recurrence or severity of depressive episodes in people with bipolar disorder ?  I didn’t, and when it came up during a medication discussion with my psychiatrist a few weeks ago, I was surprised.  I don’t know why– we already knew that antidepressants alone can actually trigger a manic episode, leading to an even worse depressive crash thereafter.

I’m not a doctor.  I am a lawyer who has worked with doctors, extensively.  I am also a civil litigation attorney, used to defending cases where people’s medical records are at issue.  I consider myself well-versed in the news, and I thought I’d done my reading about bipolar, by keeping up with the science and health sections of the Boston Globe (hooray for proximity to one of the top medical areas in the world) and the New York Times, my “paper of record.”  But I still missed things, and I’m embarrassed.  I’m not doing my work, doing the reading that I need to do to be aware of developments in the science.  Especially since brain chemistry is affected by hormones from all over the body, and is “hideously complex,” as my psychiatrist says.  I tend to think of it as playing darts, blindfolded, while balancing on one leg– there’s still so much to be learned.

I’m lucky to have a wonderful set of doctors caring for me.  But they can’t help me with symptoms and behaviors I don’t know are important, and so haven’t reported to them.  Too, doing my reading may give me a new perspective on something I’d never thought about, opening up a new avenue for treatment.  Doing you bipolar homework needn’t be a hypochondriac thing, nor need it be a distrust of your doctors’ advice or ability to keep up with the reading.  It’s simply this:  it takes two to tango, one to lead, and one to follow.  But the one who follows isn’t the patient– it’s the doctor.  My doctors can only treat what they’re aware of.  If I don’t stay abreast of the research, and combine that with my work to mood chart, med chart, symptom chart, then I am not leading, and we’re going to step on each other’s toes or crash into a wall eventually, having steered them in the wrong direction. 

So here’s what I’ve done in my battle to know better.  I’m using my gmail account more efficiently.  I set up a Google Calendar on which to record when I took my meds– since I check my email a lot, switching over to the calendar for a few minutes isn’t too time-consuming.  I take my meds three times a day– it’s hard to keep track of, even with my pill counter– but I’ve set up alarms in my calendar to go to my cell phone, to remind me.  I also enter symptoms– diahrrhea?  Worth tracking, in case I’m having a toxicity episode.  More clumsiness than usual?  A headache that’s different from my regular headaches?  Bad sleep, without the pleasantly weird dreams my medications usually give me?  Irritability?  Anything, and I do mean ANYTHING, that seems interesting or out of the ordinary goes in there.  I then did a brave thing– I emailed an invitation to share the calendars to my psychiatrist, my therapist, and my primary care doctor.  I’m a pretty reliable patient, luckily I’ve never gotten too manic… but knowing they can read the calendar whenever they want, and see how I’m doing, is comforting.  It also gives them a way to hold me accountable if I am NOT reporting things accurately, and if I’m not updating the calendar.  That all keeps them in the know.

To keep me in the know?  Google Alerts.  I set up alerts to come to me once a week about “bipolar research,” “lithium research,” and “depression research.”  I may have to tweak the search descriptions after I start getting my reports, but at this point I figure over-inclusiveness is better– I can use the “Advanced Search” options to refine the queries after I see what I get.  I’m also in the process of setting up better bookmarks to mental health sites such as NAMI and DBSA, as well as NIMH, and a Google Calendar reminder to spend an hour, once a week, checking up on their science alerts.  After all, an hour’s not too much time, since I can’t know too much– especially when I think of the hours that might be lost if I know too little.

(You can ask Google for an invitation to a Gmail account from the Gmail front page.)