Friday, July 29, 2011

Not Normal? Embrace It!

The best advice one of my doctors ever gave me is that I am not normal, so I should stop trying to "be like everyone else." Thank God, because that was getting exhausting!

The more I try to do what other people can do, the worse my illness gets. For instance, it's best if I don't stay up late, or go to bed and wake up at different times each day. That increases my bipolar cycling. When I try to go to conferences where we are up late every night, getting up early, sleeping 3-4 hours a night, I am a wreck. I am also not a morning person so I need to adjust my schedule accordingly. There are a lot of things I need to do to adjust my life so I can stay functional.

The hard thing about needing to structure your life this way is that other people think it is weird, or you are just trying to be annoying. They think the restrictions are just a way to cause problems. But in reality, when I follow all the things I need to do to keep myself stable, I am just managing my illness. It is no different than people with diabetes who have to take insulin and watch what they eat. Or people who have an occupational therapy schedule, medicine schedules, or dialysis. We are all just doing what we need to be healthy, I just wish the things I need to do were as acceptable as what others do who have illnesses they need to manage.

The only thing that is normal a out life, is that no one is "normal." We all have special things about us that we need to navigate. Embrace who you are and work with what you have.


Rev. Katie

Thursday, July 28, 2011

"You're Too Difficult to Treat"

Five years ago we moved to a new state. I was in an area where I did not know any doctors or anything about their mental health system, which meant I bounced from psychiatrist to psychiatrist and psychologist to psychologist until I found one of each that worked well with me.

I had been referred to a "great" psychiatrist by my primary care doctor and was quite optimistic about finding someone who could figure out medication for me. I sat down in this man's office, told him my background, to which he said "You're too difficult for me to treat. I don't deal with people who have such severe bipolar disorder."

Well, that was disappointing.
I have what is called rapid cycling bipolar II. Yes, there are quite a few variations of bipolar disorder and one of the reasons I went undiagnosed for so long is because my type is not the typical (if there is a typical bipolar) DSM-IV definition of bipolar I which (simplified) is fluctuating manic and depressed states, each of those states lasting for at least seven days. Then there is bipolar II which also has episodes of fluctuating mood, but the up moods don't reach full mania. In both of these forms, you could be in a depressed or manic state for months at a time.

Rapid cycling means you go from mania to depression at least four times a year, but it can be as frequent as a few times a week, or even a few times a day. I cycle at least a few times a day on average. Apparently this type of bipolar is more severe (I think all forms of bipolar are severe though), which is why the new doctor would not treat me. He did send me to a bipolar specialist, who was a good psychiatrist and was the one to finally make the additional diagnosis of ADD, which explained a lot.

For a far better explanation of rapid cycling than I can give, read this article called "Rapid-Cycling: Hard to define, even harder to treat," by John McManamy.

I get a bit tired of not being a "normal" case of anything. For instance, I also am extremely sensitive to medication so even a small dosage will give me an extreme result.

I am eternally frustrated with the fact that there is little information for atypical cases of mental illness, yet with all the people I have met with mental illness, many of us don't fit the definitions found in the DSM-IV manual exactly.

My point is, often we have to be our own advocates. Even if it seems like your illness is too severe or too complicated, keep looking for a doctor that will treat you well, as the individual you are. I wish more people would share their stories of bipolar and other forms of mental illness so that we had more information on some of the atypical cases.

It is also sad that our doctors are in a bind because while they may see these atypical cases and know of alternative treatments, because there is no real funding for research for the outliers, they often don't suggest atypical treatment because it has not been scientifically tested enough. Atypical treatment means anything from medicines intended for a different illness that also seem to help people with bipolar, or food allergies, exercise, and diet changes that help ease some of they symptoms.

Just never give up and keep looking for more information. Keep detailed records of your moods each day, or each hour if need be. Document exercise, sleep, diet, vitamins. Document how your body and mind feel instead of believing when a doctor tells you "that would never happen." Have faith that you know yourself, and find a doctor who has faith in you as well.


Rev. Katie

Wednesday, July 27, 2011

What Does Your Faith Tell You?

I have struggled with faith and mental illness my whole life. I grew up Christian, but in my Christianity and denomination, I was taught mental illness was a punishment. (Remember, this is personal experience of a specific time and place, not a statement of what any denomination of Christianity actually believes.)

There were also a lot of stories in the news at that time about people doing bad things, like killing someone, or smashing their car into a brick wall, and saying the devil made them do it. Many people in my church believed that the devil could take people over. The news and church also said these people were mentally ill.

I started to notice something was wrong with my brain when I was six, and I grew up believing that people who had something wrong with their mind were evil and being punished by God. Yet at the same time I could not figure out what a child could have ever done to deserve such punishment. It only made sense then that I was an inherently evil person. This was scary and devastating to me, especially since I really wanted to be a good person. I was scared that maybe the devil really did take people over and if I was not careful it might happen to me.

Eventually I realized late in middle school and in high school my church could not possibly be right. I knew that technically I was not a bad person, but it had been ingrained in me so much that I still always worried I was bad and just did not know it yet. The only positive in my faith was the Virgin Mary. I saw her as an accepting and loving figure who loved me as I was, so she would always protect me. When I would have panic attacks, I would pray to her.

During college and afterwards I grew even farther away from my faith. We went to church periodically, but the beliefs never felt right to me. In my opinion, far too many people were judged as being bad because they were "different" in any number of ways.

UU Chalice
As happens with many of us, we started to look for a new church when I got pregnant. I knew faith was important and wanted a religion in which to raise our son. Our friends invited us to their Unitarian Universalist church and when we visited and heard the first principle, which says everyone has inherent worth and dignity, I knew this was our religion.

My current religion now tells me we are all perfect and loved just as we are. Mental illness is not a punishment and there is no devil involved. It is an illness like any other illness.

Unitarian Universalism is also a covenantal church which means we make intentional promises of how we will treat each other with respect and care. This added a new component to my understanding of my illness.

It meant other people respected me and trusted that I would treat them well. No one assumed that just because I was bipolar I was going to be disruptive or hurt myself or others.

I also learned about accountability and love. I am loved just as I am, but the church was clear that they know all of us, mentally ill or not, may not always act kindly or appropriately. Were this to ever happen, the church would not ignore such behavior. They would support my treatment and believe in me, so much so that they would hold me accountable for bad behavior if I had any. What this showed me is that I had a choice in life. I had always previously been worried that I was inherently bad and just didn't know it. This faith told me I was inherently good, and needed to know it so I could be the happiest and healthiest person possible.

What a difference. I was free to be myself and if I struggled, I had loving support with appropriate boundaries.

I feel that my spirit and self worth were crushed by the way the church community of my childhood saw mental illness. As an adult, when I entered into a religion that was accepting and loving, my spirit was renewed. I could regain my self worth. I finally started to see myself as I saw other people, as an important and valuable person in the world worthy of love.

Each one of us will have a different relationship with the divine, or that which is greater than us. We need to find the spiritual path that works for us to be healthy and whole. For me, I believe God is Love and EVERYONE is loved. It is our responsibility to bring that love into the world because if everyone knew they were valuable and loved, I feel there would be much less violence and hatred in the world. I also think people like me would see hope and a reason to work for maintenance of our illness. When I felt unloved, I didn't care if I got better. When I knew I was loved, I knew I could get better.


Rev. Katie

Monday, July 25, 2011

Can I Care for Another Person?

Me & Mom (Photo by Jeff Norris)
I am a caregiver for my Mom who has dementia. My family and I live with my parents so Mom really has 3 adults and 1 child as her caregivers. However, most of the caregiving falls to my Dad as he is the one she is most comfortable with. My husband, son, and I help with a lot of things, but Mom prefers to have Dad help her with getting dressed and all the other basics of everyday.

But this week Dad is gone on a retreat and I am the main caregiver now for Mom. I don't mind taking care of Mom, it just happens to be unfortunate that this is not one of my more stable weeks. So I am having a hard time keeping up with caring for my son, caring for my Mom, and caring for myself.

I struggle with the question of whether or not people like me can be caregivers for others. Can I care for Mom when I have so many difficulties of my own? How do we care for our children?

For example, if I can't sleep at night and have to be up at 7:30am to get Mom ready for the day, how do I do that? I can't function on no sleep yet I also can't take a nap because of caring for another person.

I do believe that people with mental illness can lead good lives and we can be helpful to others, but it is eternally frustrating to me that I can't be a full time caregiver because honestly, I need a caregiver myself sometimes.

These are the times when I hate that I am not "normal."

I can be a caregiver, but I probably can't ever be a sole caregiver, which means I need someone to help me. Fortunately I have my husband and usually my Dad, but I wish they did not have to help me. This is where the guilt of mental illness comes in. The guilt over not being able to do everything, be "normal," and able take care of my mother on my own.


Rev. Katie

Sunday, July 24, 2011

Sometimes It's Hard to Stay Together

It has been brought to my attention that some people hold my husband and I up as a good or "perfect" couple. Honestly, that surprised me. We are far from a perfect couple, if such a thing even exists. We have been married for 11 years, but together for 16 years, since high school. My illness has gotten worse over the years, with a particularly bad stint from 2000-2007, which started right after we got married.

Every person, mentally ill or not, has undesirable character traits. Every person goes through profound changes in their life, multiple times. These are a few of the reasons why it is so hard for couples to stay together. It takes a ton of work and it is not always pleasant. I know not every couple can stay together, but in order to be sure of that, we can do a lot of work first to see if we can maintain a relationship.

Even after all these years, there are still times when we talk about separating. I can tell when Jeff looks at me and in his eyes I see his wish that I would just leave.

I could attempt to pinpoint what has helped us stay together, but I am not really sure. We love the book "The Five Love Languages" by Gary Chapman which was recommended to us on a Couples Retreat when we were attending John Carroll University, a Jesuit college. We also believe in getting professional counseling.

The thing Jeff and I keep coming back to though when we talk about separating is that we still love each other. We have to remember to stop and look at things not as they are right now, but part of a larger picture. And, when we stop and envision our lives without each other, neither of us likes what we see. I always ask myself how I would feel if Jeff died tomorrow. I never like that feeling. That is not to say we will stay together if either one of us begins to hurt the other, but we will give each other a chance first. For instance, six months after we were married, Jeff told me he would divorce me if I did not work harder to manage my illness, which was making me treat him poorly.

See, we are not perfect by any means. If you truly want to know what we are like, watch this video from Next to Normal. I believe we just had this fight, again, a few days ago.


Rev. Katie

Saturday, July 23, 2011

My Story

Since this is a new blog, I figured some background on my story might be helpful to you. This is the same information found in the "My Story" tab at the top of this page, but I thought a current post on the home page would be helpful as well.

Photo by Jeff Norris
I am a Unitarian Universalist minister, a wife, and a mother. I am also someone who has bipolar disorder, ADD, and anxiety. I knew at the young age of six that "something was wrong with me," but I did not know what it was. At eleven years old I wrote in my diary: "I promise I won't ever go crazy." My biggest fear was to have mental illness, yet I knew all along that was what was happening.

It took many years of panic attacks, depression, mania, and confusion for me to finally be correctly diagnosed with rapid cycling bipolar disorder, ADD, and panic disorder at the age of twenty five. I have been on almost every medication and I have seen quite a few psychiatrists and psychologists. My life is consumed by trying to manage my illness, do good in the world, and have a great family life. I am not currently on medication, as none have really worked yet.

My illness is much better than it used to be, but I am not what you would call "symptom free." I manage my illness through diet, spiritual practice, seeing my psychiatrist, and lifestyle requirements- along with a lot of help from my family. I believe mental illness is a chemical imbalance and also a spiritual issue because of how the mind and spirit are interconnected.

In the photo above, you can see my tattoo of the logo from the musical "Next to Normal." This musical is about a woman with bipolar disorder and her family. In my experience, it is extremely similar to my family's life.  If you truly want to know what bipolar does to not just the patient but also the family, who are usually our caregivers, listen to this musical.

In this blog I hope to help support other patients like me and their families. I also hope to raise awareness and help end the stigma against people with mental illness.

In addition to this blog, I also have a blog called Moving In With Dementia, as a few years ago my husband, son and I moved in with my parents to help care for my Mom who has dementia.

I truly believe we need to learn how to care for each other, because there are some illnesses that you just can't fix, but which can be managed, together. 

Thank you for visiting my blog and taking this journey with me. I hope you share your stories with me as well.


Rev. Katie

All Roads Lead To...A New Blog

In the past few months, I have received many comments about the few blog posts I did about bipolar disorder on my other blog Moving In With Dementia. I have also recently had people reach out to me for advice as they struggle with their own mental illness. I have given out my card to people who have asked me if I am willing to talk to their loved one with bipolar disorder. I have met with people for unrelated reasons, only to have them randomly share their story of caring for a loved one. I have heard rude comments and stereotype assumptions about people with mental illness while shopping in the store.

What I hear is a hurting world. A world of people who struggle with mental illness and have no one to talk to. A world of caregivers who are scared, tired, and angry and no one understands what they are going through. I hear a world full of stigma that makes it very difficult for patients to seek treatment and families to get help.

I hope my reflections on mental illness and the spirit bring another view to this disease. I hope talking about the medical, social, and spiritual aspects of bipolar disorder helps other people manage their illness. (I look for stories of people like me when I am struggling, and it helps me get through another day.) I hope this blog helps friends, partners, children and families talk about the toll this disease takes on them. I also write it a bit for myself as one of the things that helps me manage my illness is finding meaning and purpose in this disease which claims almost every waking moment of my life. I hope this blog adds one more voice to the effort to raise awareness and end the stigma against mental illness.

My wish is that this blog helps us all find a little more hope and connection in the midst of a disease that is often isolating and seemingly hopeless.


Rev. Katie