Staying Well - Part II

Yesterday's post focused on a very unusual 2005 study by Sarah Russell, in which she actually asked 100 "successful" bipolar patients what worked for them. The patients' keys to managing their illness are the type of things we advise each other in support groups and other venues all the time, such as maintaining a strict sleep schedule, being microscopically attuned to mood and energy levels, managing stress, taking strategic down times, and so on.

The one knock on Russell's study was that her inclusion criteria relied solely on the patient's own self-reporting of their wellness. Researchers tend to be sticklers for quantifiable data, and a very recent study published in Clinical Psychology and Psychotherapy (abstract here) addressed that concern.

The researchers found 33 Canadians with bipolar who qualified as "high functioning" according to a number of rating scales, then interviewed the patients individually or in focus groups. The authors of the study openly acknowledged Dr Russell's work, which they cited as the only previous qualitative study that has examined stay well strategies by those with bipolar. (Pause for a brief second to consider the implications of that statement.)

To no one's surprise, the patients in the study identified very similar stay well strategies to those in Dr Russell's study, which the authors broke down into six key areas, namely:

1. Sleep, rest, diet and exercise
2. Ongoing monitoring
3. Reflective and meditative practices;
4. Understanding bipolar and educating others
5. Connecting with others
6. Enacting a plan.

To go into more detail:

Sleep, rest, diet and exercise

According to one patient in the study: "I make sure that I get to bed by 10:30–11:00 every night. And a routine is really important." The researchers also identified "waking rest" such as lying down or watching TV, which "enabled people to meet social and work responsibilities."

Sleep and rest are tied into diet and exercise, as all have to do with maintaining a sense of mental alertness. One patient reported that she avoids heavy foods when she's down; another that "being active really works for me." As the authors observed: "These strategies are inexpensive, within one’s control and reflect common sense."

Ongoing monitoring

According to the authors: "Participants described the importance of learning to pay close attention to their moods and involvement in activities, in order to judge when to make changes." Thus, "individuals would spread tasks out over the week, cancel social engagements if necessary and maintain some unscheduled time."

As one patient described it:

To me it’s an ongoing basis where it’s like a ship that’s always righting itself, you know. Or when you’re driving, you’re sort of correcting as you’re trying to drive in a straight line. So those were the things that I see, and then I make minor adjustments and hopefully I don’t have to make major adjustments because I’ve been always making these corrections.

Reflective and meditative practices

These ranged from yoga to praying to journaling. One patient's Tai Chi practice, combined  with self-monitoring strategies fostered a "zone of stability" that allowed her to manage her illness well, despite experiencing symptoms.

Understanding bipolar and educating others

The successful patients in the study engaged in a variety of practices, from reading to attending support groups to charting their cycles to learning new skills from practical talking therapies such as CBT. In addition, the patients shared what they learned with family and friends, which in turn enabled them to become more supportive. As one patient explained:

I think my husband is really important because he will notice a depressive episode coming on before I will and he can tell by my body language. He says I walk differently. I carry myself differently and there is a look in my forehead and my eyebrows. He picks it out before I do. . . . He makes me aware of it and [then] I will just become more diligent about exercise, eating right, more sleep, and trying to . . . I guess, reassign priorities.

Connecting with others

Successful patients reached out in various ways, from contacting friends to finding formal support venues to volunteering to seeking professional help. As the authors explained, these activities are not unique to people with bipolar; rather the difference is the impact that these social interactions had on maintaining wellness especially during times of stress.

Enacting a plan

The patients in the study acknowledged the likelihood of things going wrong, and accordingly they had various arrangements in place, ranging from WRAP plans to informal understandings with friends and family.

Final word

The authors expressed the hope that once clinicians became aware of these stay well skills, they could tailor their therapies accordingly. But the successful patients in both Dr Russell's study and this one did not wait for their clinicians to become enlightened. Yes, they did learn from their clinicians. But, more important, they figured things out themselves.

Trust me, "Knowledge is Necessity" is not just a title to a blog; it's a way of life.

Staying Well

Today, I came across an abstract of a very recent study that solicited wellness tips from high functioning bipolar patients. This is only the second study I am aware of where researchers actually felt they could learn a thing or two from us rather than regard us as mere guinea pigs. I will comment on the study in a future blog piece. In the meantime, here's an article I did five years ago for mcmanweb of the first study ...

A study in the March 2005 Australian and New Zealand Journal of Psychiatry (abstract here) by Sarah Russell PhD of the Melbourne-based Research Matters of Psychiatry is so unusual that it merits a full article to itself.

Dr Russell recruited 100 bipolar patients who had stayed well for the past two years or longer. Staying well to some patients meant being symptom-free and behaving normally. For others, it meant a sense of control over their illness. The sample included 63 women and 37 men. Ages ranged from 18 to 83 years, with most over age 30. Seventy-six percent of the participants were in paid employment, 38 percent were parents.

Dr Russell asked these patients what they did to stay well. (In more than nine years of researching and writing about my illness, this is the only study I have come across that solicited the wisdom and experience of patients.)

The patients informed Dr Russell that they were extremely mindful of their diagnosis and “how they were responding to their mental, emotional, social, and physical environment.” Rather than simply taking their meds and forgetting about their illness (an impression created by their doctors), patients would “move swiftly to intercept a mood swing.” Moving swiftly often meant a decent night’s sleep and other strategic stop and smell the roses moments.

The study patients were adept at identifying their mood triggers, which needed to be picked up much earlier, they reported, than what their doctors recommended. By the time the sex, productivity, and spending of hypomania started to roll around, they said, it was already way too late. Instead, they were microscopically attuned to subtle changes in sleep, mood, thoughts, and energy levels.

Most participants were fanatic about maintaining their sleep. When disruptions to their routines did happen, they did not hesitate to take a sleep medication. In addition, participants did what they could to minimize stress in their lives. Smart lifestyle choices (diet, exercise, etc) were a must, and this included drastic career changes if push came to shove. Self-education was vital, and support also mattered, but more in a social and community sense rather than seeking out fellow patients.

The patients in the study tended to shop around until they found a psychiatrist who suited them.

Eighty-five percent were on meds. Adjusting doses was par for the course, but meds changes were seen as minor compared to the life and lifestyle changes the participants were willing to make. Many combined meds with complementary treatments that included cognitive therapy, nutritional supplements, naturopathy, psychotherapy, Chinese medicine, massage, tai chi, meditation, and yoga (often over the objections of their psychiatrists). Ten participants stayed well on talking therapy without meds.

Dr Russell was particularly impressed by the “stay well plans” of the patients, which ranged from verbal understandings with family members and others to informal written documents. It wasn’t that the patients were obsessed with their illness. Rather, “when participants were feeling well, the illness was in the back of their minds. It did not play a large role in their lives, but they knew it was there. On the other hand, when participants encountered triggers and felt 'early warning signals', it was necessary to become more vigilant.”

Dr Russell's Book

Dr Russell expanded her study article into a 140-page book, A Lifelong Journey: Staying Well with Manic Depression/Bipolar Disorder. The book features the 100 patients in her survey in their own voices.

Says Jodie, 29, who has been episode-free for three years: "Changes I have made to stay well include moving from a ‘party house’ in the city (which I thrived on) to living by myself … close to the ocean. I left a highly paid, stressful, and social job as an events manager in the city. I am now a full-time student … I also gave up smoking marijuana and moved away from people who were not good for me."

In addition, Jodie learned to take her pills without resentment, has limited her social activities and involvement in various projects, and established a regular sleep schedule and other routines. Especially important, Jodie has developed "the capacity and insight to see episodes coming on." For example, when she finds herself talking very quickly and craving excitement, she implements her "action plan."

Dr Russell was particularly impressed with the "stay well" plans of the people she interviewed. Susie, for instance, knows her main triggers are family stress and caffeine. When she finds herself buying more than one lotto ticket, visiting adult bookshops, and writing late at night, she goes to battle stations. This includes limiting her coffee, restricting her access to cash, turning off her computer after 6 PM, and not going to night clubs on her own.

Recognizing early warning signs is crucial. Ellen finds diagnostic language obscure and unhelpful. Referring to the standard mania checklist of grandiosity and increased energy and the like, she reports: "I would be pretty far gone if I had all those symptoms. To manage this illness, I need to intervene a long time before I start making grandiose plans and taking myself on a major shopping spree."

Ellen relies on her friends to act as the canary in the coal mine. "I no longer confide in my family who have no insight into bipolar," she says. "The people who monitor my moods are the people who understand my illness. I trust my friends completely."

Alan takes charge of his illness by staying informed. The nurses in the hospital, he reports, "kept pushing the medical line – ‘take your tablets and you will be fine.’ They seemed to think the only treatment for manic depression was medication. If only it was that easy!"

Dissatisfied with the simplistic quality of the standard literature for patients, Alan began researching medical journals with a critical eye. "Some of the research methods are questionable," he reports. Nevertheless, "once I knew what was wrong with me, I could deal with it. I have not looked back since."

One Patient’s Wisdom

"Let me give you a few tips of how I stay well with bipolar after 10 years ‘in the game,’" Damien told Dr Russell. On one hand, Damien acknowledges his need to be informed and vigilant. On the other, "I must loosen the tag on my forehead that says ‘bipolar’ and just get on with it … It’s an essential Zen paradox; take it seriously and not seriously at the same time."

Meditation and massage are two staples for Damien. Exercise, he says, gets the serotonin levels right and helps him "feel in my body." Laughter is also good medicine. Through his illness, he has achieved greater spiritual understanding and awareness.

Damien is microscopically attuned to early shifts toward depression or mania. Herbal tea, he says, usually "does the trick" for heading off a potential manic attack, but he has Zyprexa handy – as a standby med with the permission of his psychiatrist - just in case. He has used the Zyprexa twice in the past year. He maintains "humdrum" sleep and work schedules and relies on friends for support. He is not afraid to hit the mattress and "batten down the hatches" till a foul mood passes. "I have a fridge magnet," he concludes, "that says ‘Next Mood Swing in Six Minutes.’ Unfortunately, my low moods can last a bit longer than that."

Staying Well

The patients in Dr Russell’s book were successful in finding and applying what worked for them. Dr Russell spotted common themes, including:

• Acceptance – This is the first step to taking control to one’s life.
• Knowledge – "With time and experience, people can develop the wisdom to manage their illness and stay well."
• Sleep – "A crucial ingredient to staying well."
• Stress – "It is not always possible to avoid stress. It is possible, however, to develop strategies to minimize the impact of stress."
• Lifestyle – Diet, exercise, sleep, etc.
• Awareness and insight of triggers and mood states - This includes fatigue, jet lag, hormonal fluctuations, stress, lack of sleep.
• Interventions – such as canceling social engagements and getting a few good sleeps.
• Medication – "The right medication at the right dose."
• Support – "Outside insight" is often welcomed.
• Professional support – "It is worth shopping around for the most suitable healthcare professionals."

Meds and Wellness: Like Rolling a Rock Uphill?

"How do you rate your meds in managing your illness?" I asked my readers here in survey that ran through the month of February. The results, quite frankly, astonished me.

Fifty percent responded that meds were their single most important tool and another 32 percent that their meds were "important, but no more so than their other tools." In other words, four in five patients put meds at the top of their list, either as a solo act or with a dance partner.

As for the one in five: A mere three percent said meds were less important than their other tools, just five percent said their other tools were way more important, and another five percent assigned no importance to meds (or were not on meds).

Why am I surprised? In the 10 years that I have immersed myself full-time in researching my illness and listening to patients and loved ones, never once have I come across an "end-user" who has told me of writing a letter of appreciation to Eli Lilly or some other manufacturer or talked about starting up, say, a Seroquel fan club.

To the contrary, all I hear is complaints. Meanwhile, over the same 10-year period, I have witnessed the rise of the recovery movement, which acknowledges the role of meds in our getting better but takes a dim view in their ability to get us well.

What gives? Has everything I've heard all these years been wrong? Have meds been given a bad rap? Are they really much better than patients have been letting on, way decidedly better?

Not exactly. No, in fact. Make that unequivocally no. The month before, I polled my readers on how well they are doing. One in four replied they were "in crisis or close to crisis." Four in ten reported they were "stable but not well." Just one in five said they were on the way to recovery, and only 14 percent responded that they were back to where they wanted to be or better than they ever could have imagined.

Granted, neither poll was scientific. My readership may not reflect the patient population at large. Moreover, those who answered my second poll may not be the same people who responded to my first. But even taking all that into account, we are looking at numbers that boggle the mind, namely:

82 percent who rate their meds as their number one management tool vs 14 percent who are actually well.

Holy crap!

Four years ago, I came across a far more scientific survey conducted by Melbourne researcher Sarah Russell PhD. Dr Russell recruited a hundred bipolar patients who were doing well (either symptom-free and behaving normally or having a sense of control over their illness) and asked them what they did to stay well. Meds figured in the equation, but they were way down low on their list of priorities.

Instead, the people Dr Russell talked to emphasized various mindfulness and stress reduction techniques, rigorous sleep management, smart life decisions, and so on.

Dr Russell's findings are more in accord with my own experiences and those of "well" patients I have encountered, namely:

When we're new to our diagnosis, or in crisis or heading into crisis, our meds loom large. "Snapping out of it" and "getting a grip" are simply not options. Our brains are overwhelmed. We don't know what hit us. We need our meds to do the heavy lifting.

That changes further into the game. Our brains start to boot up. Our thinking comes back on line. We start finding out everything we can. Over time, we acquire much greater wisdom and insight. We pick up a vast range of coping and management skills.

As we become more adept, our meds assume far less importance. We may still be taking them (generally in reduced doses or on an as-needed basis), but we're simply not thinking about them as much. We are thinking far more, instead, about the things that have an impact in the here and now, such as stress and sleep.

For instance, for many of us, missing a good night's sleep is far more likely to result in personal disaster than missing a meds dose. Paradoxically, the key to getting a good night's sleep may be taking a sleeping pill.

The "well" patient understands this. Unfortunately, if my two polls are anything to go by, way too many of us are not there yet.

Much more on Dr Russell's study and related issues in future blogs ...

From mcmanweb:

Staying Well

The patients informed Dr Russell that they were extremely mindful of their diagnosis and “how they were responding to their mental, emotional, social, and physical environment.” Rather than simply taking their meds and forgetting about their illness (an impression created by their doctors), patients would “move swiftly to intercept a mood swing.” Moving swiftly often meant a decent night’s sleep and other strategic stop and smell the roses moments.