Wednesday, August 31, 2011

Why Can't I Get it Together?

There are times when this illness is just so frustrating! Every day there are things I need to do in order to help stabilize my illness, and I can't do it. I often ask myself "Why can't I get it together?" Why can't I do all the things I need to help myself?

Why? Because there are times in the cycle of this illness where you just don't care anymore. There are times when you think no matter what you do you won't get any better so there is no reason trying. There are times when you know you should not be doing something because it is bad for you, but you do it anyway- it is like you are watching a train wreck happen and you can't stop it. There are times when we are in a social setting where self care such as a certain diet, sleep schedule, and exercise schedule seems ridiculous to other people so you don't do it because you don't want to be judged or made fun of. And frankly, the list of things one needs to do each day just to get by is ridiculously long and sometimes you are just too tired to do them all.

I have been trying to "get it together" for years and sometimes it happens, often it doesn't, but I can't give up hope. I do the best I can and keep fighting to get better. In times like these I try to remember what I want to get better for. I wish I had enough self-esteem to say I want to get better for myself, and that is my biggest motivator, but right now it isn't. I want to get better for my son who would be devastated if something happened to me. I want to get better for my husband who loves me too, and my parents so I can be here to help them. I want to get better because I love being a minister.

In times when you just can't get it together, what keeps you fighting for your health?

For those of you with a loved one whom you are trying to help, in my experience, it has never helped for other people to tell me what things/people I need to get better for. Saying I need to get better for my husband or son just makes me feel guilty. Saying I need to get better because other people in the world have it worse than me makes me feel guilty and mad. However, people who have told me I need to get better because I am worth it and deserve a good life, did make a difference. I know, it sounds backwards to some people, but that is what works for me. I would sum it up to say that unconditional love, not judgment, helps me. I don't know what will work for your loved one, but I just wanted to let you know what helped me in case they might be similar and it helps them.

Blessings,

Rev. Katie

Friday, August 26, 2011

Nickelodeon Stigmatizes Mental Illness

The popular Nickelodeon children's show iCarly ran an episode a week ago called "iLost My Mind." One character, Sam, checked herself into a mental institution because she and another character, Freddy, kissed. She thinks she has lost her mind because she kissed Freddy and when Carly and Freddy find out where Sam is, they try to break her out.

When I heard the episode would air, I sent an email to Nickelodeon expressing my concern of the impact such a show has on our society and kids. It increases the stigma against mental illness and it is also a risk to children who see it and will be too ashamed to ask for help if they are struggling with mental illness. I did not get a reply from Nickelodeon and neither did the other people I know of who sent similar emails.

My seven year old son and I actually really like iCarly and watch it together often so we watched this episode together to see what it was like. He is well aware of my bipolar disorder and the realities of mental illness, not the cultural misrepresentation of it.

After the show I asked him "How did you think the show made people with mental illness look?" He said "It made them look stupid."

Then I asked him "How do you think a kid with mental illness might feel after watching that show?" His eyes got wide and he said "They would feel really bad."

I get very frustrated when our society makes fun of people with mental illness. I am appalled though that a children's show would add to the stigma. The mental institution in the show is dirty, the "patients" either walk around like zombies, think they are from the future, speak as multiple people, or wear gas masks. The signs on the wall of the common room say thing like "Urine is for the Restroom," "Biting is for Food," "Don't Kill You're Friends," and the game area sign says "Don't Eat the Pieces."

For all those who think the show is just a comedy and does not negatively affect kids or their view of the mentally ill, just look at my son's response to the show. I remember my reaction to shows like this when I was little because at just six years old, I knew that there was something wrong with my brain. Seeing shows like this and hearing people make fun of those with mental illness made me ashamed, scared, and unwilling to ask for help.

I hope Nickelodeon listens to the many emails people sent in expressing concerns over the show. I hope they are inspired instead to create a public service announcement for kids that mental illness is just that, an illness, let them know where to get help, and gives them hope that they can get better.

This episode was highly anticipated by children and youth everywhere, and received over 5.5 million views on it's "world premiere" day.

Here is the best link I could find to the episode:

If you would like to contact Nickelodeon about this episode, you can email them at Nickprivacy@nickonline.com or: (212) 258-7579.

Blessings,

Rev. Katie

Wednesday, August 24, 2011

Help from "The Penguin"

As a minister who has read a lot about counseling and as a person with mental illness who has been in therapy for 100 years (well, it feels like 100 years), I have read plenty of "self-help" and psychology books. Books about cognitive behavioral therapy, how to manage attention deficit disorder, nutrition and mental illness, 12 step programs, family systems theory, childhood psychology, Dr. Phil, and many more.

Each book and writer promises to be able to help me change my life, inspire me, and give me personal revelations. However, there is only one author I turn to in the midst of a life that is spiraling out of control and a breakdown of mass proportions- John, "the Penguin" Bingham.



John Bingham writes about running. He writes about how to start running, how to train for a marathon, how to avoid black toenails and chafing. So, why is he the author I turn to when I am, as I say, "loosing it?" Because exercise and a healthy lifestyle helps keep my bipolar, panic and ADD manageable and his books inspire me to do those things.

I stopped running when we moved back home a few years ago. In Chicago, the running community is huge and every pace runner and run/walker is welcome. In Cleveland, I am almost always the slowest, which would be ok if the running culture here was more open to slower runners. You clearly get the vibe here that slow runners should not be at a 5K, half marathon, or marathon, and there are very few slow runners at Cleveland races. It makes racing awful, yet one of the things I love about running is the races.

So, I picked up John Bingham's newest book, "An Accidental Athlete" and I have the courage to start running again. His book helped me remember I should not care that I am slow, because I love running. I love running for the fun of it and I like training for long races because it is a challenge. I like long runs with my husband where we talk and discuss the important stuff in life. Bingham focuses on the fact that running pace does not matter, instead, we run for all the great things it brings into our lives. Running changes our life no matter how fast we run. He says in his book No Need for Speed, "Through running, I create myself as I have always wanted to be."

The whole process of training for and finishing a race makes you a different person each time. You learn more about who you are and what you value. Not to mention, training for an event keeps you running, which is important because of the proven benefits of exercise on mental health.

When I stopped running, I lost myself. I lost all the progress I had made. I lost my decision to care about myself and believe I could get better. Bingham's books remind me I don't have to loose all of those things. I have the ability to change all of that and make my dreams come true. John Bingham says of runners, "The miracle is that we were able to reach down and find some part of ourselves that still believed our dreams were possible."

Reading his books reminds me that I still believe my dream of a good life is possible.

Where do you find hope and inspiration?

Blessings,

Rev. Katie

Tuesday, August 23, 2011

The Medicine Dance

There is a song in the musical Next to Normal (about a woman with bipolar and her family) called "Who's Crazy/My Psychopharmacologist and I." It talks about the medical treatment for Diana, the woman with bipolar, and how her husband Dan feels about her illness.

The part about the psychopharmacological treatment for Diana is scary, sad, and yet funny at the same time. For those of us who have done this medicine dance, this song is all too real. You take a cocktail of medications which give you a ton of side effects, and you are declared stable when eventually you feel nothing.

As I mentioned in a previous post, I don't really want to be on medication and I would rather manage my bipolar with vitamins, diet, exercise, sleep, and other lifestyle adjustments. I am afraid of the side effects of the pills, yet my bipolar can not be managed without them.

I recently talked to a teenager who has been told they should be on medication, but they do not want it either. I don't think people should be forced to take pills, but part of the disease of mental illness is that we don't think we need and/or we don't want medication. We must get good doctors and get multiple opinions if we need to, so we can adequately determine if we truly need to be on med's or not.

Looking back, I wish when I was in high school or younger, I would have had medication. First of all, my illness was not quite as severe, and the anxiety was the biggest problem. Interestingly, anxiety is the one thing which is easy for me to get rid of with medication. To know that I could have prevented years of crippling panic attacks with one pill makes me sad. I wonder how much more successful I could have been at the things I loved liked dancing, singing, and color guard. I lost so much by not being treated for my anxiety.

Let me describe the difference for you. When I am not on medication, I have panic attacks when I preach on Sundays. In order to do this thing that I love, I must adequately prepare, have a plan if my panic attack gets too bad, and do a lot of mental preparation. I preach, all the while telling myself in my mind that everything will be ok. I am scared to death, heart racing, palms sweating, for an hour, and no one knows. Or, I take one pill and am a little nervous, but present in the moment, with wonderful congregants, sharing a sacred hour with them.

It's a big difference, and while medication scares me, if I can find something that works, it can be worth it. The problem is the darn medicine dance. The side effects can be devastating and sometimes it feels like you spend most of your life cutting pills in half, timing when you take them, and trying new ones.

All this is to say that taking medication is a hard decision. I am attempting to come to grips with the reality that I have to take the pills. I still have to take vitamins, exercise, maintain a sleep schedule, meditate, and eat right too. Medicine won't take the place of a healthy lifestyle. As they say in Next to Normal "Is medicine magic, you know that it's not. But it's what we've got."

Blessings,

Rev. Katie



Sunday, August 21, 2011

Take Your Illness Seriously

I went to my psychiatrist this week. He asked me how I have been doing and I said "awful." He looked me straight in the eye and said "When are you going to start taking your illness seriously?"

Well, I thought I had been taking it seriously. I see my doctor regularly, try to keep the correct diet, exercise, and sleep schedule. I keep trying to take care of my bipolar without medicine, and that is why he asked me when I will take my illness seriously. There are people who can take care of their mental illness through exercise and nutrition, apparently I am just not one of them. When I can do all of the lifestyle adjustments perfectly, I remain pretty stable, but not if life gets too stressful, or I forget an element of the program for a few days, or I am out late for a meeting and don't get to bed on time. Basically, he was asking when I would accept the fact that my illness is too severe to be able to control without medication.



My doctor knows I need to be on medication, and also knows it needs to be my decision. However, I don't want to take it. There are not many I can take because I am so sensitive to medication. I can't take anything for the ADD because all of those pills made the bipolar worse. When I take very low doses of the few things that do help, my creativity lessens greatly, which makes my job harder, as writing is quite essential to preaching.

I do take my illness seriously, but I don't know that I am ready to accept I can't do this on my own. Part of it is because I am scared of medications and the side effects I encounter on them. The other part is the societal belief that people with mental illness can choose to get better. Much of society believes if we just worked harder, stopped being so sensitive, and tried harder, we would be fine. While intellectually, I know that is not true, emotionally, I feel like a weak failure because I can't take care of this myself. I try to combat this negative thinking, but it is still in the back of my mind that if I were a better, stronger, smarter person, I would not be sick.

I think I can take my illness seriously, but this will take some getting used to because this is the first time I have felt despair that I may not ever get better. On medication, I have never been stable, just about 20% better. Off medication, there were only a few times I have been 70% percent better, but only for a month or two, then I am a wreck. I feel like now, with the understanding that my illness is bad and I have to take medication, that I have to decide either to be a emotionless and uncreative medicated blob, or a raving lunatic. I am not sure I like either of those choices, but all we can do is deal with what we have.

So, we are changing my medication for what feels like the thousandth time, and I am afraid of it. I am afraid of the side effects and afraid of loosing the parts of myself that I do like, such as my creativity. I guess I just have to decide that I am serious about managing this even though I might loose something in the process.

Saturday, August 13, 2011

Perfectionism, ADD, and Organizing: Not a Good Mix

My husband recently asked me how I used to be able to stage manage shows, or how I can plan church work, but I can't organize my own office. (Well, I can organize my own office, but usually only in a manic organizing fit and it never stays organized.)

I can organize and manage things outside of myself because I can see the individual steps and I can see an end to someone else's task, but not my own. I am too close to my own stuff to be able to see the individual parts. When I look at my office, I see a ton of stuff and no plan. I get overwhelmed, panic, and become unable to decide what to do next. I can sit in my office for hours and get three-fourths of the room done and be paralyzed with being unable to figure out the last steps to complete the project.

However, invite me into your office, and I can organize the heck out of it. You will have a place for everything, and everything in it's place. And here is where the other problem lies.

I want everything to be perfect. If something can't be perfect, my first instinct is that it's worthless. If my office can't be perfectly organized, with a place for everything, I think it is pointless to try and put things away. I can't visualize where the individual pieces will go, so they just get tossed on my desk. Part of the perfectionism is because if I don't see something, I forget about it. I need things to be perfect so I don't forget anything.

For instance, I actually had all my makeup organized in labeled drawers, yet I barely used any of it. This is because I couldn't see it. The ideal storage system for me would be to have everything hanging on my walls so I see it at all times. As a step in this direction, that is what I did with my makeup this week, I hung it on a magnetic board.



Most people don't understand why I just can't get it together and be organized. Literally, I just can't do it. Multi-step systems of organizing, like writing appointments down and transferring it to my calendar, are too confusing. I always forget to transfer the information because if it is not in front of me, I don't remember to do it.

I have been told, and read in various books, that the inattention and inability to see the individual pieces of a project are due to my Attention Deficit Disorder (ADD.) The perfectionism is part of both the bipolar disorder and the ADD.

I have tried everything to figure out how to deal with these complications of my illness and I have yet to find a solution. I have read a ton of organizing books and they all are too complicated for me. There are files, steps, bins, buckets, and rules as to how many times you touch a piece of mail.

If anyone has a system that works for you, I would love to hear about it. I could always hire a stage manager for my own life, and I am seriously contemplating doing that.

Blessings,
Rev. Katie

Wednesday, August 10, 2011

Do You See What I See?

Sometimes I don't realize how odd my bipolar mind can be unless I am talking to my very rational, very linear, very stoic husband. I don't know how he does not see the world like I do. How come music does not bring him to tears, or make him feel deeply connected to something larger than himself. How come sad stories in the news don't make him feel as if the world is doomed to be horrible forever? How come stories of incredible generosity do not give him faith in humans and hope for a better world? Why isn't everything either filled with beauty, music, and color, or darkness and despair? Why can't he stay up until 3am because some issue is so important that we have to talk about it right now? Why can't he feel another person's pain or fear? Where is all the passion, beauty, fear, and anxiety in life?

I feel like he is missing out on life at times, but I am pretty sure if both of us were this way we could never stay together. It frustrates me that sometimes I can not connect with him on the intense level I function at each day. I am a little sad that he will never see what I see. However, it is his stability and logical yet creative mind that keeps my overly creative mind from taking over our lives. His mind makes him great at what he does, and mine makes me great at what I do.
He always says he likes how I am more artistically creative and more empathetic than he is. He feels he has learned a lot about how to care about other people and connect socially from me. He has taught me how to take my instincts and process them so I know what logical next steps to take. Together we make a pretty good mix.

It is hard not to feel alone in your illness if people around you do not see life as you do. This is one of the things that can break up people who love each other. It seems like you can't connect sometimes, or your partner does not understand you. Just because others do not see what we see, that does not mean we are alone. It is up to us to realize  we still have connections with others and it is probably our differences that make us great partners or friends.

Blessings,

Rev. Katie

Friday, August 5, 2011

The "Evil Spirits" Myth

I noticed this week that my blog came up under a search for the phrase "do evil spirits cause bi-polar." My blog was a search result probably because of the previous post I did about what religion has taught me about mental illness over the years. In my younger years it was not a positive message.

One of the reasons I wanted to write this blog about bipolar and spirituality was to help dispel this myth that evil spirits cause bipolar disorder. Whenever I would do a search of "bipolar spirituality," the evil spirits myth would pop up as a search result.
Photo by Jeff Norris

Besides the fact that it is just not scientifically possible for evil spirits to take you over, I also don't like that this line of thinking implies those of us with mental illness have no agency. If something else has taken us over and controls us, then there is nothing we can do. It is like being a puppet. We can't get better, we have no free will, we also have no responsibility. What that really means is that we have no hope. For me, hope is one of the things I need in order to live with this illness.

In the midst of deep depression, during mania, or thoughts of what life would be like without me here, I need hope. Hope is the feeling that what is wanted can be had. I want a happy and healthy life. Hope tells me that I can keep going. It says this whole month might be bad, but maybe one day next month will be good. Hope reminds me that I can learn to manage my illness. I can know myself well enough to notice triggers and stop a downward spiral.

It is extremely devastating and dangerous to promote the myth that bipolar disorder is caused by evil spirits. There are actual counseling centers and religious institutions that teach this myth. I really feel that for counseling centers, it should be considered malpractice to tell people they are taken over by evil spirits. I have no words for how scary it is to think something evil possesses you.

For all of you who, like me, were taught that mental illness is caused by evil spirits, it's not true. It is a chemical imbalance, it may be hard but you can manage it, and you have choice in your own life.

Blessings,

Rev. Katie

Wednesday, August 3, 2011

Mania

I have been reading a lot about bipolar disorder online and watching videos of people's stories and I noticed something interesting. People seem very comfortable talking about the depression side of bipolar, but they hardly ever mention the manic side. They will go into detail about their suicidal thoughts, feelings of hopelessness, inability to work or care for themselves and others. Then they say, in passing, that they also have manic episodes.

Is this because depression is becoming a bit less stigmatized so it is easier to talk about? Is this because mania is the part that scares other people? Is this because mania is when we do really embarrassing or stupid things?

Mania is described as a feeling of euphoria, feelings of grandiosity, reckless actions such as excessive spending, feeling that nothing bad will ever happen to you, fast speech, and racing thoughts. In my experience, this is the part of bipolar that people are most scared of. No one wants you making a fool of yourself at a party, spending all of your savings, speeding down the highway, or Facebooking and texting while manic. We do not want this to happen either, and I think that is why we don't talk about it.

I was not diagnosed correctly with bipolar disorder until I finally told my doctor about symptoms that I was too embarrassed to mention. My mania is actually more anger than euphoria. I might speed down the street not out of a sense that I am invincible, but because I am so mad.

I noticed the other day that I was in a manic phase, but it was a bit different than what I was used to. I had turned up the music really loud and was dancing and singing with my son. I did feel euphoric and like nothing bad could ever happen. I also didn't notice that it was 10pm and the backyard speakers were on so I think the neighbors got a bit too much Selena Gomez and Black Eyed Peas when they were trying to sleep. Happy mania is new for me, and if it is controlled, can make for some really fun times with my son who laughs hysterically at me.

I have no scientific evidence to back this up, but I think that some of us may manifest mania as anger or happiness based on our life situation. When I was little, there were many things that happened in my life that made me mad, such as illness of loved ones for one example. Now life in general is better and I think my mania is changing as well.

I don't think either kind of mania is good because you are more likely to do stupid things when you are either really happy or really mad. Actually, excessive spending or excessive eating happens during either time. Or you might commit to things you really can't do, start a new businesses, or make huge life changes.

after manic organizing

I do have to admit that there are advantages to mania because this is usually when we are the most creative and the most brilliant. Medication takes that away for many of us and that is one of the reasons some of us stop medication. To me, mania represents the creative spark, and I don't really want to get rid of that. I would not mind if it was a bit less like a firecracker and more like a candle flame though.

Mania can be embarrassing, scary, extremely creative and productive, and no one wants to talk about it. However, until I did talk about it, I went misdiagnosed for seven years.

Mania is just part of who we are and part of what we have to manage.  I try to think of managing the manic phases as harnessing the power I have within me to make it productive and not destructive.

Blessings,

Rev. Katie

Tuesday, August 2, 2011

Can't Sleep

It's 1:20am, recently that is still early in the evening for me.

I wrote a post a few days ago about not being able to do what "normal" people do, like stay up late and still function. If I do that for a day or two, I may not sleep for weeks. One slip, one change, can derail the management of my illness.

A few weeks ago I went to a conference for the weekend and we were up really late each night. Last week my husband and I were the main caregivers for my Mom since my Dad was out of town. Unfortunately this created many late nights and a lot of stress. These events have led to me being virtually unable to go to bed before 3 or 4am.


That is one of the things which is so frustrating about this illness, I can't make myself do what I need to. It would make sense for me to just go to bed. I do, but I can't fall asleep. I can lay in bed awake for hours. I surf the internet on my iPad because I am bored.

I am literally watching myself stay awake, telling myself to go to sleep, totally annoyed that I can't force myself to sleep. It is like watching a car with no breaks speed down the road. Actually, your brain kind of feels that way.

I don't have a reason why many people with bipolar can't force themselves to do the right thing to care for themselves. No doctor has ever had a solution for how to get around this besides trying to address symptoms.

Can't sleep? Take a sleeping pill. Eat too much? We have a pill for that. Can't finish a project because you get distracted? Take a stimulant. Won't exercise? We don't have a pill for that. BUT, the stimulant we gave you makes your heart race when you run, so don't run.

I just need to pick a 5K or something and sign up for it so I have some outside commitment which makes it more likely that I will exercise-which I can't do unless I get enough sleep, and if I run enough one of these days I might wear myself out enough to fall asleep before 3am.

Here's to hoping I can trick my brain into doing the right thing.

Blessings,

Rev. Katie

Monday, August 1, 2011

Too Afraid to Share

I asked my husband to read over a potential blog post today. After he read it, he said, "This is not your style." He pointed out that my writing style for this blog is very different than my other blog, Moving in With Dementia, and my preaching style. Interestingly, Jeff said the problem with the posts on this blog is that they are too preachy. No one ever wants a preacher who is too preachy!

My style is storytelling. When I write a sermon, I need a story first. No story, no sermon. It's just who I am. So, why is my style for this blog so different?

I am afraid to share my story.

I am not afraid to tell people about my bipolar disorder, and even share a bit about it, but I realized I am afraid to say too much. People with mental illness are judged so harshly that our jobs, family life, and friendships are at risk if people know too much about us. That is why most of us don't speak up.

However, the purpose of this blog was to let other people with mental illness and their families know they are not alone. Sharing our stories is what connects us, not sticking to just intellectual, heady talk about what is going on.

From my experience, having mental illness makes you feel like a freak. Heck, other people actually call us freaks. It is lonely, not only for me but for my husband and son. Sometimes it feels like we are the only people dealing with this because very few people actually talk about it.


So today, part of our story included being lucky that I even got out of bed this morning. Jeff actually got me to go for a walk, which was a big deal. (I was supposed to go running and just couldn't do it.) One of my great therapists said we were working towards having days when I don't wake up and automatically think "I hate my life." I have very few of those mornings, but I will keep working for them.

Blessings,

Rev. Katie