Two Steps Forward, One Step Back

Sometimes I hate my medicine. I hate that it makes me a different person than I was before. I hate that while it may help the bipolar, it gets rid of some of the things I like about myself.

For instance, I went to play Dance Dance, Revolution (a dance video game) with my son today and I can hardly play it. My coordination is awful now. This upsets me because I have fun playing this game, but more importantly, this is something my son and I love to do together.

When my bipolar is bad, I rarely have the energy to play the game with him. Now I am feeling a bit better, but I can't play the game because of the medicine. That just does not seem fair. I know I should not care and just have fun and play it anyway, but I do not like losing part of myself, something that I was good at. And honestly, it is really not the same and not as fun, to fail every time.

As I try to do things I used to be able to do, I am finding how much my medication has changed me and made some things impossible to do and other things much harder to do. I trip over myself running now, I am much more tired and dizzy all day, and my heart races when I am exercising.

I am constantly struggling with the question of: Is the medicine worth it? I don't know yet and I will just wait and see, but I know this is one of the big reasons why people stop their medication. While you gain some things, you may loose a lot of yourself.

Blessings,

Rev. Katie

Avoiding Unhealthy Situations

There is an interesting balance between trying to manage one's mental illness and work and live in the world. To manage bipolar disorder, one must work hard to reduce stress, exercise, eat right, take medication, and get enough sleep. Often life situations are far more stressful than we can handle, and asking for help in that situation is hard. In my experience, in our society, it is acceptable to take time off or to need to adjust your schedule if you have cancer. However, to need to take time off or adjust things because you have mental illness is seen as a sign of weakness.

Good boundaries are important. Photo by Jeff Norris

I believe many of us with mental illness are more in tune with what is going on around us and dysfunctional environments are not something we can or feel obligated to continue in. I know for me, being someone who works extremely hard to have good boundaries and be responsible, I have a low tolerance for the opposite behavior. Being in environments that are not healthy can also set off a bipolar episode, so it is really unsafe for people like me to be in such situations. We need to draw healthy boundaries and be in as healthy a place as possible. However, in my experience, it is looked down on when we just wont put up with this behavior, especially if part of the reason is that it is harmful to us. I guess I do not know why drawing boundaries is seen as a sign of weakness as opposed to a sign of health.

One of the most important things people with bipolar disorder and other forms of mental illness need to do is create as stable a life as possible so that it is less likely something will trigger your illness. However, this is often the hardest thing to do because other people see you as weak, lazy, or not willing to love others no matter what. But the best thing my husband ever did for me was draw boundaries with me and say I had to get more help in order for us to stay together. When he put his health before mine, he actually enabled me to have the strength to do the same for myself.

I am hoping this blog post helps people remember that you need to take care of yourself first, or those you love will suffer. We can't let other people's judgement about what is good and right take over our own judgement. Most things in life are not black and white, right or wrong so if you need to make tough decisions in order to be healthy, do it.

Blessings,

Rev. Katie

Difficult Decision Part V

This is in follow up to my recent journey of deciding to take medication. (Part I & II, Part III, Part IV) I think this will be the last part of this series for a while.

After some cutting of pills to get a correct dose and timing, this new medication seems to be working out well, and I am learning to live with the side effects. I had all the tests done to make sure the more concerning side effects were not harming me in any way, and it does not look like they are.

This past week when I saw my doctor again, we did add in another medication (one I have taken before) for the depression since the new meds do not help with that. We will see how it works.

Overall, I am very glad I stuck with the medication and side effects to see what would happen. I thank my hsuband for the many nights he stayed up with me as I agonized over taking the meds.

Over the past seven months, my bipolar disorder had gotten so bad that there were many things I could not do. I was just too exhausted, angry, and unable to get myself together enough to really have the life I wanted. However, this week I decorated the house for Halloween with my son, which I really would not have been able to do before. And today we built a little fort on the couch and I read Harry Potter to him. I have started back on Weight Watchers for the weight gain, and I am working on other lifestyle changes.

In our "fort," after the collapse :-) photo by Jeff Norris

I understand that I have to live with and manage my bipolar every day, but it was at the point where it was taking over my life. Clearly we could not let that happen and I think that is one of the things people need to know about managing mental illness.

We do not choose to be this way, but when it gets to the point that we can't do things and be who we are because of the disease, we do have the choice to keep fighting and get more help. The help will change over time. I assume my meds will change again at some point. I assume I will have hard times, and even right now I am still in the mode of needing to do a lot of work to get stable. But there will also be times when I am stable and I am in a routine where I barely think of my illness.

We may not be thrilled with all the things we have to do to manage our illness, but many people have different kinds of illnesses and they all manage as well. The point is that we can help each other find what works, keep our routines, and have many wonderful days.

Blessings,

Rev. Katie

Scrapbooking and Mental Illness

Today I opened up the large wooden chest which houses my many scrapbooks, which has remained closed for almost two years.

For many years, scrapbooking was an integral part of my life. It was my hobby, art therapy, and spiritual practice. I even taught a class at church many years ago called "Scrapbooking as a Spiritual Practice" and was hired to make scrapbooks for other people. Yet I have let this most important part of my life fall by the wayside. It is no wonder why my bipolar disorder has gotten worse these past few years.

My lack of scrapbooking is not the only reason I am struggling so much, but it is a significant contributor. Scrapbooking was my way of lifting my spirits, lessening the negative thoughts in my mind, and helping me remember who I am and what I want out of life.

When I looked through my scrapbooks today I was shocked at how much of myself I have forgotten. I have forgotten how creative I am, how proud I am of myself, how much fun my husband, son, and I can have together, what I have accomplished, and how much I have to live for. I have felt defeated and depressed for so long and with my art form hidden away and a room too messy to scrapbook in, I have no reminder. No way to process what is hard in life, and celebrate what is good. No way to connect with the divine as art is my main mode of connecting with that which is greater than myself.

I know from experience how important all art forms are in our lives and how imagination fuels the mind. However, I think scrapbooking provides a very important medium for people with mental illness.

In my experience, when I am depressed, paranoid, or manic, I have lost touch with parts of reality. For example, when I am angry and manic, I may think my husband hates me, never loved me, and wants to control me. This is not true, yet I can not stop myself from thinking it at times. Then we fight and I might refuse to take my medicine. Things slide downhill from there. However, my scrapbooks tell me different. If I actually took the time to look at my albums I would be reminded of how much my husband loves me, how much fun we have together, and how supportive of me he is. For me scrapbooks can stop a manic or depressed episode from getting full blown.

The act of scrapbooking is also the way I process things. Through page composition, color, photos, and words I can see the reality of a situation. If you ask me today about the two half marathons I completed, I will probably tell you that I was too slow, I never trained enough, I wasn't dedicated enough, and I was a failure. However, the act of looking at the pictures, writing about what it felt like to train in the middle of the Chicago winter and what it felt like to cross the finish line with my husband and son, shows me reality. I can be proud of the work I did, how I trained, and feel like a success rather than a failure.

I know my next project is to clean up my scrapbooking room and bring back that part of my life. I also know that the first ArtCare program for mental illness I want to create for my family's foundation, the Carolyn L. Farrell Foundation for Brain Health, is a scrapbooking program. By doing these two things I hope to help heal my mind and bring that healing to others.

Blessings,

Rev. Katie

Religion and Recovery

The magazine BP Hope (Bipolar Hope) asked for responses to a question about religion and recovery for their fall 2011 issue. They used my answer, which I have posted below and you can also see online by clicking here. The online version does not have my name, but in the subscription it does.


 Question: Many of us draw strength from our religious faith and relationship with the divine. How has your faith helped you cope with bipolar and maintain your stability?

The fall issue of BP Hope looks great and I can't wait until I get my copy in the mail. I am really interested in reading the article about weight.

Follow BP Hope on Facebook, they have great posts and are a wonderful community. Also, I really love their blogs on their website. Two recent interesting blog posts are Money and the Manic Depressive and The Benefits of Going Public.


Blessings,


Rev. Katie

Book Review: "Sometimes My Mommy Gets Angry"

We have always wanted to make sure that our son understands my mental illness in a way that is appropriate for his age. In my opinion, it is not good for us to hide such things from our children because kids tend to think that things happening around them are their fault. I know even when we explain exactly what is going on and that an illness is not a child's fault, they will probably think it is sometimes. I want our son to know my mood changes are not due to anything he does and I want him to understand this illness as best he can so his internalization of what is happening can be kept to a minimum. However, I have found little resources for young children of parents with mental illness, especially bipolar disorder. So, I was very surprised when I was browsing the children's section of our local bookstore when we lived in Chicago (57 Street Books) and I found a book called Sometimes My Mommy Gets Angry by Bebe Moore Campbell.

In this picture book, Annie's happy mother makes her golden pancakes in the morning, but Annie thinks "I hope that she is still smiling when I come home. Sometimes my mommy doesn't smile at all." When Annie gets home that afternoon, her mother is angry, yells at Annie and Annie asks her to stop yelling but knows her mother can't stop. Annie calls her grandmother for help, and her grandmother reminds her that she can take care of herself, to which Annie says "It's not fair. Every time my mommy has problems, I have to take care of myself."

Annie and her grandmother go over Annie's care plan, such as staying in her room, eating from her secret stash of food, going to the neighbors house in case things get really bad, and remembering that Annie can find sunshine in her own mind even if everything around her is dark.

The book ends with Annie caring for herself, finding joy in the falling rain and sunshine in her mind, and waiting for the next time her mommy isn't angry.

Overall, I think the book explains bipolar disorder in a way that is understandable to children. I am not so thrilled with the "play teasing" that the children in the book do to one another, but I can over look that. One of the things I really like is that the grandmother validates Annie's feelings, such as telling her that it is ok to be angry, it is ok to be scared, and then they create a plan for how to deal with what is going on. One thing I am a little unsure about is that the grandmother says Annie's mother has not asked for help yet, and it implies if she did, she would get better, which is not entirely accurate. Many of us work very hard to get better and still struggle with our illness every day.

Clearly though, this book is very accurate and I can tell because it makes me cry every time I read it. It describes so much of what my son goes through and how he has had to care for himself when I have been very sick. This is not something I want for him, yet it is a reality of our lives.

What I want him to know is that I fight this illness every minute, every hour, every day and will keep fighting so that we can have the best life possible. I hope he knows how much I love him, even when I am angry, which is also mentioned in the book. I make sure I explain what is going on, take time away if I get angry, and let him know that it is my illness making me angry or sad, not him. I find I have kind of gone overboard in this regard as he gets annoyed that I tell him I love him so frequently. He says "I know you love me Mommy, you don't have to tell me all the time!"

Blessings,

Rev. Katie

Difficult Decision Part IV: "100% Better"

This is a continuation of my reflections of how difficult it is to decide to take medicine. (Here are Parts I & II and Part III.)

Reading the many possible side effects of my medication.

I have been on my new medication for a week now. As I mentioned in my previous post, I started with side effects of dizziness, extreme fatigue, and feeling faint. Now we can add to that some side effects I prefer not to mention, weight gain (yes in one week), and racing heartbeat just walking up the stairs.

However, according to my husband and son, I am 100% better than I was before.

Dang it!! This would be so much easier if the medication did not work. Then I could just stop the meds and have lost nothing. Instead I have side effects for which I need to have more tests run to see how the medication is affecting my body and now I fear needing to stop it due to finding out that it is hurting me too much to continue taking it.

I actually have never been this stable. Even when I was "stable" before, while I was able to get through my life and be productive I still had a baseline of feeling miserable, sad, and angry. Now mentally I feel fine most of the time, which is really weird for me (post about that coming soon).

I can't believe after a life of misery and after 13 years of medications, that we have found one which works, only to have the risk of losing my sanity again if the medication is too risky to take. Or I continue to take it but have side effects which seriously limit what I can do. Such as, is driving safe? Will I ever be able to exercise again or go on a bike ride with my son with this increased heart rate? Will I be fat forever?

What the heck is that all about?

These are the times when I question what kind of God, Universe, etc... messes with people in this way. What is the purpose in this?

All questions I will be exploring further, but for right now, I just need to wait. Wait to see how long this stability lasts, and wait until all the tests are done and we see what we are dealing with.

Blessings,

Rev. Katie