Bipolar Firsthand

Facilitating a DBSA Group and My Biological Clock

I feel I have arrived in the DBSA society. I have now been asked to run small groups and have done so effectively (in my opinion) three times now. I am not a natural leader nor do I have much desire to control other people but nevertheless the groups have run smoothly under my watch. I feel rather foolishly proud.

Lately I've been thinking about children. I'm 31 and at some point I suppose I should decide one way or the other if I'm going to have my own or not. Selfishly, I like the idea of having more people in the world that look like me. I'm reasonably intelligent and attractive, genetically I think children of my own would be productive members of society. However, I have this little bipolar disorder issue. It's a genetic disorder and someone in my family somewhere must have it, I'm just not sure who. Certainly no one in my family has been diagnosed, but I digress.

The issue is really the likelihood of passing it on to my children if I choose to have them. My psychiatrist thinks I should go ahead and have children, and so do my parents. I'm undecided myself. The fact is, I wouldn't wish this disorder on anyone. Sure, with medicine and therapy and so on it can be controlled, but that isn't really what I'm worried about. I'm worried about the years leading up to a diagnosis and how painful and disruptive they can be.

Bipolar Disorder for me is under control for now, but there's that nagging what if. What if I don't sleep enough and I end up in the hospital? What if I forget to take my medications? What if some major life event triggers me? It's an unpleasant way to live. On the other hand, it is a life and do I want to deny life to others?

There's no guarantee that my children will experience bipolar disorder exactly the same as I do. While there seem to be similarities in how people experience the mental illness, ultimately it's a very individualized disorder.

Is my desire for children selfish? Perhaps I should just adopt or raise foster children. I could still contribute to society as a whole that way. Perhaps this is even silly to discuss, I've never been pregnant anyway, who knows if I even can have children.

Make New Friends and Keep the Old - When to Disclose Bipolar Disorder

Socialization is important for everyone, but it is especially tricky when you have a mental illness. When do you disclose that you have bipolar disorder? When you have an episode, before you have an episode, or never and hope for the best?

The fact is, once you've had an episode you are very likely to have another. My psychiatrist doesn't think I will have another as long as I stay on my medications, but I think he's mistaken. In any case, with bipolar disorder you always have to live cautiously, waiting for an episode to strike. And besides, over 50% of us will go off our medications at some point for any number of reasons and then we are likely to relapse.

So, since the odds are stacked against us, to who and when do you disclose? Since I have this blog, I disclose far more often than others I imagine, although technically this blog is anonymous, a number of people who know me personally know who the author is. However, there are a number of people, namely family members, who are completely unaware of my mental illness.

These family members know I was in the hospital and that I am taking daily medication, but they have not been made aware of what it is for. This is not by my choice or design but by request of other family members who are afraid of me having to deal with the stigma attached to bipolar disorder.

I have lost some friends due to my mental illness since it is very hard to understand, unlike cancer or other physical ailments, bipolar disorder doesn't neatly fit itself into expectations. However, most people have been more understanding than I could have hoped for. I don't know if they think of me differently or not, but you do find out who your true friends are once you've been hospitalized.

So, when to disclose, before or after you have an episode? My vote is for before and to educate others on what exactly bipolar disorder is and what to expect. But how soon before? Certainly you shouldn't go around telling everyone right when you meet them that you have a mental illness, but how do you answer the inevitable, "So, what do you do?" question? If you have a job, this is easy, but if you are living on SSDI, it becomes more complicated.

I would answer the question with a number of hobbies that you engage in. Once people get to know you for you and you begin to trust them, I think it is alright to disclose. If it is a romantic relationship, I think you should disclose earlier rather than later so that your partner knows what they are getting into and does not feel trapped.

If it is a work situation and you need accommodations, I would disclose shortly after you have been hired. In this way, you avoid the problem of your potential employer not hiring you (for another reason) because you disclosed in the interview and they found some reason not to hire you that did not have to do with your disclosure. Sure, you can sue, but it would be pretty hard to prove. If they fired you after you requested accommodation, it becomes more tricky for them instead of you.

Ultimately, if you wait until you have an episode and are forced to disclose because of the magnitude of that episode and potential hospitalization, you risk losing your social network. They might now feel cheated and tricked like you have been withholding an important piece of information about yourself from them. Or, you may lose their friendship due to the stigma associated with bipolar disorder. Wouldn't you rather lose them early on, on your own terms, then wait until an episode occurs and you don't know why you are losing them?

If you feel the burning desire to talk openly about your mental illness, there are support groups you can go to to do just that, like DBSA, www.dbsalliance.org . Remember, YOU are more than your mental illness. You are a person with hobbies, interests, skills, talents, and so forth. Mental illness is just one small piece of the pie that makes up who you are although sometimes it can feel all-consuming.

Recommended Bipolar Reading

I read a lot. Probably more than I should. Not sure if it is my normal personality or a symptom of bipolar disorder. In any case, I try to put it to good use by not reading too much science fiction and focusing my efforts on subjects that matter, like bipolar disorder. Here's a list and summary of the books I've read lately:

A light-hearted romp through the world of bipolar young adults. Easy reading, without much substance. The author, via a road trip, is looking for young successful bipolar individuals like herself.

Easy to read guide chock full of action steps and easy to implement tools to manage bipolar disorder. The sections of the book build on one another to create a simple path to follow. This really is a "101" book, being most useful to individuals recently diagnosed or those who have not yet been diagnosed but suspect they have bipolar disorder. My favorite chapter was "Minimize Stress."

A comprehensive manual covering all aspects of bipolar disorder including defining the disease to exploring non-medical remedies. A lengthy book with an adequate amount of personal experience. I found some parts to be unnecessary for me such as brain anatomy and the dietary supplements section, but overall a very thorough and helpful book.

A chilling tale of inpatient stays, manic and depressive episodes, and their aftermath. Some space given to ECT, not much to medications actually working. As an attorney, Terri's life seems full of triggers. An easy read with which many individuals with bipolar disorder are sure to identify.

A compelling memoir that explores not only mania and depression but also the life of someone with bipolar disorder inbetween. David Lovelace's mother, father, and brother, as well as himself, are all afflicted with bipolar disorder. The author is very pro-medication after a relapse of his own and of his parents. David Lovelace presents a hopeful story of how to still have a successful life and surive bipolar disorder.

A comprehensive guide to bipolar disorder. The author's father has the illness. Includes firsthand stories from many sources, informative sidebars, web links for more information and help, and a summary/list of action steps at the end of each chapter. A straight-forward writing style makes this book a must-read.

Social Anxiety

My psychiatrist sure has a lot to say in fifteen minutes. He thinks I need to get out more, to put it mildly. Don't get me wrong, I totally dig my doctor, but I think he thinks I have way more potential than I actually do, unless of course I am manic! So, I have a little bit of social anxiety along with some regular anxiety, but mostly social.

Normally the only thing I do during the week is go to the DBSA meetings (www.dbsalliance.org). Last night I decided to go to an anxiety meeting that had been recommended to me. Not exactly a social event, but I thought it might give me some pointers.

It was a small group, only five people and two facilitators. We spent about twenty minutes doing a relaxation exercise and then we talked about various things that were making us anxious. I'll only talk about my own social anxiety because you are not supposed to talk about other people's stuff outside of group therapy. Makes sense, no?

They asked me what made me anxious and basically it's because I either don't know what to say to people or I'm afraid I'll inadvertantly become the life of the party through alcohol. I'm not so good at small talk. Plus, I'm in quite a conundrum because I'm in the middle of a long-time move to another city and so I don't really want to make new friends where I currently live, nor do I have the ability to make new friends in the new city because I'm not really there often enough yet.

With that aside, one site I have found extremely helpful in finding things to do, although not necessarily getting me out the door to do them is www.meetup.com . You can find all sorts of people doing all sorts of things you might be interested in. I belong to a couple of singles groups, hiking groups, and a book club. There's all kinds of outdoor sporting events and indoor cooking events and people who just like to play board games. It's really an awesome sight.

For me, the hardest thing to do is go to a social event for the first time. Once I know some of the people it gets easier and easier. Therefore, for me, I'm going to look into joining classes at the community center in my new town and possibly at the community college. In that way, I'll be obligated to meet the same people over and over again. I'm also a bowler, so I will probably join a bowling league for the winter season as well.

Employment

So, I went to my psychiatrist today and he brought up the issue of work, as usual. He thinks I would be happier if I was working, but hasn't actually given me the okay to work. He was just thinking down the road I guess. But, in any case, seemed like a good topic for today.

I have trouble keeping jobs due to the stress level. Plus, since I have to be hospitalized every occasionally, it doesn't make for good employer/employee relations. Seems I always pick the wrong occupation too. My last manic episode coincided with employment at a collections agency (yeah, now I'm the one in debt) and my last depressive episode happened when I was employed as a high school English teacher.

On one hand, I think individuals with bipolar disorder need structure, regular bedtimes, exercise, diet, and the like, but on the other hand having a structure at work seems a tad difficult what with the unpredictability of episodes and having to take off time for doctor's appointments.

I think the ideal job for someone with bipolar disorder is one which is low stress and one where you are able to create your own structure. For me, that means working for myself while at the same time being employed as an independent contractor. I am a mystery shopper and have been since 2006. If you would like details on how to become a mystery shopper, e-mail me at [email protected] and I will walk you through the process. Don't pay any fees to become a mystery shopper like those ads you see online all the time.

I found some other great ideas for jobs that I think would be suitable for bipolar individuals in a book called Weekend Entrepreneur. I found ideas such as being a personal concierge, designing and leading custom tours, being a virtual assistant, being a pet sitter, and being an eBay Trading Assistant. Those were just the jobs that appealed to me. You can purchase the book and read all of the great ideas here:

Other options you may want to consider include www.groovejob.com for part time work or www.coolworks.com for seasonal work. Also, you can work online at your own pace at www.mturk.com where you perform human intelligence tasks for cash.

If you are on SSDI you have to notify social security when you start a job, even if it is working for yourself. They will give you nine months in a 60 month rolling period to earn as much as you want in nine qualifying months. A qualifying month is any month that you earn more than $700. Once you have had nine qualifying months, you can continue to receive SSDI for 36 months as long as you don't earn more than $980 (2009 figures) in a month.

That's a little bit tricky, and while I thought that it would be simple, when I notified them of my employment as an independent contractor social security sent me a fifteen page form to fill out to determine if I was still disabled. They did determine I was still disabled and I am a couple months into my 60 month rolling period with no qualifying months yet (mystery shoppers don't really make as much as the ads claim, unless you work your tail off).

Whew, that's a long entry, but I know that work is one of those subjects that comes up over and over in a bipolar's life. We all desperately want to go back to having a "normal" life and that includes employment.

Finding a Psychiatrist

Finding a good doctor that you get along with is an absolute must. After all, you are going to meet with this individual time and time again and discuss very personal items. With that said, I also like to find a doctor who is inexpensive. For you, that may mean someone who accepts your health insurance, or accepts Medi-Cal or Medi-Care if you are in one of those programs.

What if you don't have health insurance? Well, I am in that very situation. I am Medi-Cal eligible but for some reason the payment I would have to make out of pocket with Medi-Cal would be higher than my doctor's sliding scale. I recommend going to a County psychiatrist. In my experience they are good doctors, and if you don't get along with one there are usually more than one in an office.

For medications and pyschiatrist visits (and therapist visits if I chose to have them) I pay a little over $200 a year based on my only income being SSDI currently. I don't know what will happen when I automatically get Medi-Care after being on SSDI for two years, I will look into it and post when I know. I see my psychiatrist next Tuesday so I will ask him then.

Other than going to county, I think the best way to find a good doctor is to ask other individuals with bipolar disorder. Doing this is easy, you just go to a DBSA meeting, www.dbsalliance.org ! Chances are, if a doctor is well-liked by a few individuals you have a better chance of getting along with them too.

Weight Gain and Dieting

Since I was diagnosed in January of 2008, I gained 65 pounds. I was about 104 pounds when I was admitted to the hospital, very thin for me since I am 5'5". I currently weigh 153 pounds. Weight gain is a very sensitive issue for women and I imagine for men as well. Most of my weight gain was due to being placed on an anti-psychotic called Zyprexa. However, some of it was definitely due to my own poor eating habits as well.

So, I've started on a new diet. It is called "The Coconut Diet" and is essentially an Atkins-Style low-carbohydrates diet with the addition of 2-3 tablespoons of coconut oil a day. In nine days I have lost six and a half pounds without exercise.

I am currently in the very strict 21 day portion of the diet, after that I will be able to eat a limited amount of carbohydrates such as fruit, starchy vegetables, alcohol, and grains.

It was very difficult for me to cut out sodas, sugar, alcohol, and caffeine. In my opinion, individuals with bipolar disorder tend to consume more of these items than other individuals, especially caffeine. Some people have dual diagnosis where they have an addiction issue in addition to bipolar disorder.

It is important for us to eat a healthy diet because fluctuations in this area can lead to depression or mania. A diet rich in protein, fruits, and vegetables with very little sugar is probably best. Don't worry if you slip up once in awhile, it may even be a good idea to give yourself a day off each week to eat whatever you like.

I'll keep you updated on my progress with dieting!

Talk Therapy/Support Groups

I have belonged to a support group since February of 2008. Granted, I don't remember much of when I first started going because I was still recovering from my manic episode. I belong to a branch of the Depression and Bipolar Support Alliance. Their website is at www.dbsalliance.org , where you can find a support group near you.

Support group has provided me an outlet in which to ask questions about medications, get information about what manic and depressive episodes typically look like, air my frustrations, and just generally talk out any issues I am having at the time. I typically go twice a week and it has been an invaluable experience for me just to know other individuals with bipolar disorder to relate to.

I highly recommend the DBSA, but they are not the only support group around. There is also NMHA located at www.nmha.org and the National Alliance on Mental Health at www.nami.org . I have not used their support groups but their web pages are very informative and helpful.

Another form of support you may want to consider is going to a therapist or a psychologist in addition to your psychiatrist. Typically this is someone who will meet with you once a week for a 50 minute period to discuss your issues in further depth. Psychiatrist appointments are usually only fifteen minutes in length, not long enough to delve into important matters.

I have experience with psychologists, but I do not currently have one. I lucked out with my psychiatrist, he is a very caring individual and gives me adequate time to discuss things even if we run a little over the fifteen minutes. In return, I don't get upset when he is late to an appointment because he is tending to another patient.

Social Security

I had a bit of a hypomanic episode on Tuesday night. I've been trying to avoid caffeine and I had four cups of green tea. Sent me flying. Since I was unable to sleep, I took four Ibuprofen, which eased my symptoms and put me to sleep. I wouldn't recommend this approach unless your physician or psychiatrist has approved you for over the counter medications (mine has).

One of the most important things to do when you are diagnosed as having Bipolar disorder is to apply for Social Security. At Social Security's website, www.socialsecurity.gov, you can apply for both Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI). Any disabled person can apply for SSI, but SSDI is dependent on your work history or your parents' work history if you became disabled before the age of 22.

I recommend applying as soon as you are diagnosed because it takes at least four months to hear back from them on your application. It is a lengthy form online or you can get the form from your local Social Security Office.

In addition, if you are out of work due to a non-industrial illness or injury (such as Bipolar disorder) you can apply for State Disability Insurance (SDI). SDI provides partial wage replacement to eligible workers who are unable to work because of disability. The form for SDI is typically much shorter than the one for Social Security and they start paying you much faster. I applied for SDI and SSDI at the same time.

A number of disabled individuals who apply for Social Security Disability Insurance get rejected the first time they apply. I did not, so I cannot tell you much about the appeal process. I do know individuals who have appealed three times before they were approved. For that story, go to www.sandiegodisabled.webs.com .

If you need help filling out forms, feel free to e-mail me at [email protected] .

Bipolar Medications

There are a few people I know who manage their mental illness without medication, but I am not one of them, nor would I want to be. It requires an extreme amount of personal awareness. Usually, once you are diagnosed you are going to be prescribed at least one medication.

Most often if you are only on one medication it is going to be a "mood stabilizer." Other drugs you may be prescribed are antipsychotics, antidepressants, or antianxiety medications. Don't be discouraged if the first medications you are prescribed don't work.

Medications work differently for everyone, there is no magic bipolar bullet. However, there IS medication out there that will alleviate or reduce your symptoms. The trick is finding the right drug or combination of drugs that works for you and does not cause side effects that are intolerable for you.

Side effects I have personally experienced include tremor, weight gain, burning sensation in my veins, lactation, and extreme drowsiness. I have been on many medications in the past few years, including Remeron, Lexapro, Ativan, Risperdal, Depakote, Lithium, Celexa, Trileptal, Synthroid, Zyprexa, and Abilify. Excuse me if I spelled any of those wrong, it's a long list!

Some of those medications worked okay and some were bad and the ones I am currently on seem to be working well for me. I am currently on Trileptal, Celexa, and Abilify. Tell your doctor if you experience side effects that bother you or the medications just don't seem to be working as well as you think they should.

While there is no absolute cure for bipolar disorder, symptoms can be greatly reduced to the point where you can live a productive, successful, enjoyable life. The right medications are a large part of that. The rest of the journey of managing your illness depends on regular therapy as well as reading, learning, and applying concepts that you think might work for you.