Wordstew entry; 11/8/11

Artist: http://zenosfrudakis.com/sculptures/public/Freedom.html

Challenge: STEW ON THIS for Tuesday, November 8, 2011: “A good photo stops a moment from running away.” Eudora Welty. Write up to one paragraph about this image.

Many people don't understand how difficult it is to treat mental illness. There are never any clear-cut answers; nor are there any quick fixes. In the beginning, I was wrapped up in my illness, all alone, not knowing for certain what was wrong. In my late teens, I was diagnosed with cyclothymia after my anorexia landed me in the hospital. Medications and therapy were administered with some positive effect; but still, something wasn't right. Eventually it was determined that cyclothymia was an incorrect diagnosis, and it was changed to bipolar II disorder with chronic insomnia. Different medications, different therapy; things were starting to fall into place - but we weren't there yet. Years of riding the diagnosis/medication merry-go-round followed; and finally, in my late 20's, we had an answer. Bipolar NOS, chronic insomnia, PTSD, and generalized anxiety disorder. This was after 5 hospitalizations in 2 years. So, 12 years after that initial hospitalization, we found the correct medications at the correct dosages, and the correct type of therapy. There are still times when my meds need to be tweaked, but, for the most part, I have been free to live - most importantly to me, to live hospital free for almost 4 years now.

Bipolar is not my identity

There is a good group on facebook for people with bipolar. The problem is that we are using our real names, and when we post in the group, a message shows up on our profile wall; "Jen discussed xxx on Bipolar". So I need to go in and delete all of those messages, which is annoying. Although I'm not ashamed that I have bipolar, there are things that I need to talk about with people who understand, and some of my friends and family who are my friends on facebook don't understand.

I found a different group (not on facebook) that I really like; everyone is nice and I can be anonymous! I mentioned the new group to the people in the facebook group, and told them how it was nice to be able to be anonymous, and most suggested that I just create a separate account for posting in the group. First of all, it's against facebook rules, and you can call me a goody-two-shoes if you want, but if I agree to follow rules I stick by that. The other thing that I realized is this: if I set up a separate account just to post about my bipolar, in a way I am giving my bipolar it's own identity. I don't want to do that. It is a part of me, I have this illness, but it does not define who I am as a person. It would almost be like I'm creating a split personality for myself. I am a person who lives with bipolar, I am not bipolar itself.

Any of you who have this or another mental illness that would like to check out the group I mentioned, here is the link: http://forums.psychcentral.com/forumdisplay.php?f=57

The Voices of Bipolar

I've asked some others with bipolar to describe how it feels to have bipolar. No personal info about these people will be given. I will add more if/when I receive more feedback.

Person A says: "I felt somewhat happy with a quick little description that I came up with. Not having a current pdoc or T to speak with, I am unsure how much of this is bipolar, and how much are other things as of yet undiagnosed. To me, Bipolar is like a really fancy restaraunt. You sit down for your first of many many courses. I tell the waitress what I cannot have, and then out comes course 1. I really enjoy what they bring out, to the extent that I completly engross myself into it. Everything about this particular course is amazing, I love everything about it, I try to figure out how I can make it at home. Before I am able to finish this, the waitress comes by and removes my plate and brings out course 2. Perturbed, I go ahead and dive right into this second course, only to find out that she put tomatoes. Something that pisses me off to no end. I chew the waitress out that brought it to me, pissing her off and making her cry, only to find out, she wasnt the one who took my initial order. I simply jumped the gun and took out my anger on someone who..... oh look... Course 3. This is the best course I have had yet. The meat is so tender, I wonder if maybe I should pan fry this, but maybe if I baked it I might not be able to get it as moist. Wrapping myself around this fantastic feast, I get interupted again, by the latest and greatest course 4. This time, its burnt. The waitress comes over and I get snobby with her even though she didnt cook the food, and once again, have succeeded in pissing off someone who doesnt deserve it. So before I know it, Out comes the next course. This course means to much to me. It may have been something that I remember from my childhood. The way my mom used to make slices of bread, covered with peanut butter and sugar. Of course, thinking about this, causes me to remember the reasons my mom may have made that. The struggles my mom was facing at that time in her life, but still finding a way to feed me. Upsetting, I simply run out of the restaraunt. Locking myself away in the car. My wife pleading with me that she needs a ride home. All the time, trying to find out a way to open me up, get me to unlock the doors so that I can let her inside my emotional vehicle. Eventually, I fall and decide to open the doors. We drive around, working out my issues I had, and where do we end up? Another fancy restaraunt. Sitting down for course 1, I fall in love with the food and start the cycle over again."


Person B says "I don't know how to sleep, I don't know how to control my anger, I don't know how to always socialize because it's tiresome, I don't do my favorite things, my body hums when the mania sets in, I can't get out of bed, I can't get in bed, I forget to eat, I don't want to eat, I won't exercise, I have great ideas that never go anywhere, I don't always remember where I have been, I don't always remember what I bought at the store, I wonder why I buy some of the things that I do, I sometimes can't stand to be touched, I usually cannot tolerate loud noises, especially tv, I tell people what to do with their life, I always have to be right, sometimes I talk way too much, sometimes I don't talk at all and I could go on and on. It is hard to explain to others especially because of my shame and frustration."
 
Person C says "Building up to a climax that never comes. Falling to despair as you obsess with the failure. Knowing that she is listening to your thoughts, and convinced you know hers. Standing up, and never saying a word depressed that she crossed the room, knowing it is your repulsiveness. Convinced she saw the darkest secret you think is real. But I am superman, and can do anything... however I am tired, and want nothing to do with the world. I hate myself, I am a horrible person. I can't slow down, my thoughts race with images, voices.. altered perception. Drugs, straight jacket, chemical shackles. Lock me up.. hold me down. I am afraid.


Everything is good now. I'm on top of the world. I am going to be the first one to walk on Mars. The program is just waiting to bring me in, I should train. Exercise, clean, move, destroy, slipping darkness. I can control your mind. Do what I want, damn you for not doing what I need to have done. I hate you, and cant live without you.

What was I thinking. I feel normal, not over or under. I don't need meds anymore."

Life On a See-Saw

You've probably heard the expression "I'm juggling a lot of things right now", or "I dropped the ball". So let's put a literal translation on that and how it relates to having bipolar disorder.

People without bipolar are standing on solid ground, with a lot of colorful balls at their feet. Each ball represents a different aspect of life. There is work, family, recreation, friends, housework, hygiene, exercise, shopping, vacations, etc. They reach down and grab the balls and try to juggle them. It's not easy for anyone, and sometimes people do drop a ball. But for the people who are standing on solid ground, it's easier to reach down and pick the balls back up.

People with bipolar are standing on a see-saw, trying to balance in the middle. At any given moment we can slide either way, into depression or mania. We also have extra balls to juggle. Taking medication, side-effects of medication, doctor visits, and therapy appointments. Even when we are able to balance in the middle, it can be hard to reach down and grab more balls than we already have. Sometimes we manage to grab a couple of them and get them into the air with the rest, but eventually we will lose our balance and slide down to one side of the board.

When we slide down to the depression side, we usually drop almost every ball. It can be hard to hang on to some of the basics, like hygiene or eating or even just getting out of bed. Sometimes we are able to work our way back to the middle without medication adjustments, but there are a lot of times when we have to start over and tackle new medications with new side effects.

When we slide down to the manic side, every ball on the ground is tempting. We try to grab them all at once and start to juggle frantically. We lose interest with some of the new ones easily and grab for different ones. A lot of times we feel so good that we throw the medication and doctor visit balls out the window. We feel pretty good at first, and don't feel like we need those any more. And we don't have time! We have all of these new shiny balls to play with. Eventually, the balls start to drop if we become psychotic or delusional. Things can get scary pretty fast. Finally we end up in the hospital getting put back on medication, and then we try to work towards the middle again.

Many of us spend a great deal of time starting over at the beginning. It can be very frustrating and we often feel like failures. It's easy to get to a point where we get to the middle and just say "why bother trying to pick up those balls? I'll just drop them again.". This is when we need people the most. We need people to help us find reasons to try again. A lot of people get tired of this and leave us. We're just too much work. But please try to stay. Please remember that we aren't choosing to live our lives on the see-saw. We aren't asking for your pity, just for your understanding.

Ten things friends and family members NEED to know about those of us with bipolar disorder.

This is not written by me, I found it in a group I'm in, I believe it is from a book by Julie Fast:

10. If you blame us or put us down or get impatient or angry with us for bipolar disorder behavior it simply makes us sicker! Impatience never got us out of bed or made us less depressed. Anger never made us stop spending when we are manic. Kind and realistic rules and limits do help. Telling us that you will not and cannot live with us if we don't treat bipolar disorder first does help. But helping us help ourselves is the best gift you can give us. If you know what behavior is a symptom of the illness, you can then treat the illness to help the behavior instead of getting so upset with us all of the time. (We are upset enough with ourselves, believe me!)

9. Understand that we cannot always help you do things when we are sick. You may need help around the house, with the kids, the bills, the laundry, etc. Deep down we know that, but sometimes we are just too sick to do anything. Help us get well and then we can help you around the house more. Help us get well and we will be a good friend, partner, daughter, son, grandson, granddaughter and parent. If you expect us to be able to do normal things when we are sick, then you will only get more upset with us. If you expect us to treat bipolar disorder first- that is reasonable and something we can work on together! Then we can do the laundry and the dishes with pleasure. We can have fun in life.

8. Depression is very motivated. I don't know if there is a more successful illness in the world. It is a champ, a winner! It sets goals and follows through with its goals. "I want Julie to be really sick and down on herself today. I want her to stay in bed, eat junk and cry buckets of tears." And it sure does do a good job! Depression is serious and motivated and strong. Without the right tools it is impossible for us to fight it. WE ARE NOT LAZY! WE ARE NOT SLACKERS! WE ARE NOT DUMB, WEAK OR FAILURES! We are sick. Learn our individual signs of depression and help us fight it. If depression is motivated and successful, then we all have to get motivated and successful. If you see us sitting on the couch doing nothing day after day- don't get on our case for being on the couch. Get some tools to help us get off the darn couch! Get motivated, serious and strong, just like depression. Then teach us how to do this. Help us find the right mix of medications, alternative treatments and lifestyle changes that make depression the failure instead of making us look like failures. We need your help to fight this illness. We need your love to beat depression.

7. What you do in YOUR life makes a huge difference in how we experience our bipolar disorder symptoms in OUR lives. This is not fair on you, but it is a reality. It should be that you can do what you want and we can lead our own lives and let you be you - but people with bipolar disorder cannot simply separate themselves from the things you do. If you are stressed and unhappy and unhealthy, you have to know that it can affect us greatly.

6. Bipolar disorder is a disability. It is not really recognized in that way right now, but it will be more so in the future- many of us are dis-abled from leading the life we want and you want us to lead. We simply can't function like other people can function. We can't snap out of it, therapy our way out of it or just get on with it- whatever the "it" is you want us to do. WE HAVE TO LEARN WHAT WE CAN DO AND WE NEED YOUR HELP! Please know that stress makes us sick- good stress, bad stress, stress that is none of our business- all stress makes us sick. Can you look at us differently? Can you see us as people who have an illness that often makes us unable to be "normal"? Can you hug us, love us and help us even when we make you scared, angry and embarrassed? Please help us turn a disability into an opportunity.

5. This illness is not about you. We are not trying to punish you or ruin your life. We do not want to treat you badly. It is a side effect of bipolar disorder when we change our moods. This does not make it ok- and it does not mean that it will not cause huge problems for you, but it is not about YOU at all.

4. If we are manic, spending money seems like a good idea. It is part of the illness. It is a proven symptom of mania. We need your help in creating checks and balances so that we can prevent manic spending sprees. If you are blind to what we are spending when we are well and then suddenly notice the $5000 we spend during a manic episode and then get angry, it is not fair. Please be consistent and help us monitor our money at all times so no one is caught unaware again.

3. Medication side effects really, really suck. They often make us fat, tired, sick, scared, suicidal, seemingly stupid and angry. We need help in adjusting our meds and telling the doctors what we need. It is not ok to have these side effects and when we are in the middle of them and a doctor is telling us just to "wait and see how things go," we feel helpless and want to give up. Help us find different medications and comprehensive treatments that do not have so many side effects. Advocate for us if we are intimidated by our doctors.

2. Some of us with bipolar disorder cannot work like "normal" people. We cannot go to the office or keep a 9-5 job. It simply makes us too sick to function. Many of us have had a different job every year because we want so badly to fit in and be like everyone else. The reality is that we may need to find alternative ways to support ourselves and we truly need your help. Please understand that we WANT to be productive- we just have to find a different way of being productive. Going to an office really is not everything. If we need disability, help us get disability and understand that it is so very humiliating for intelligent people like us to have to get help from the government because we can't work. Never, ever make us feel guilty because we can't work! Help us find work that is non stressful, fun and helps us be independent. And if you are supporting us because we can't work- thank you so very, very much.

1. People with bipolar disorder are intelligent, funny, creative, free thinkers, different, loving and kind - WHEN THEY ARE WELL. People with bipolar disorder are demanding, sad, annoying, scary, self centered, all over the place, uncaring, dangerous, and crazy - WHEN THEY ARE SICK. In order to help us be all of the good things, bipolar disorder must be treated first. This is the ONLY way for us to have a good relationship. Because bipolar disorder does not want any of us to be happy. Friends and family are so important in the lives of people with bipolar disorder. We do not need you to take care of us- not at all- we need you to help us take care of ourselves: Take care of yourself first, get the right tools and then show us that you are willing to join us in our goal for a stable life. Always take care of yourself, but NEVER GIVE UP ON US!

The little house

There is a little house in the center of my world. It sometimes keeps me safe, and it sometimes keeps me trapped. The house has been constructed from many materials - the shattered glass of broken promises and the crushed granite of abandonment. Bricks of denial and the ice of my silences. Manic bursts of colored mosaic tiles and tear-soaked pillows. My picket fence is unpainted and sagging under the weight of societies expectations.

When I dare to venture from my house, I never know which landscape will greet me. Will I enter a dark, vast wasteland full of emptiness or will I step into the violent throes of a hurricane? Will I be greeted with warm sunshine and the flurry of a busy boardwalk or will I walk through a lush forest with the hushed sounds of small animals to keep me company? I've shuddered in the violence of tornadoes and felt the bursting of lava from a volcano. My pain ridden cries have echoed into the darkness and I've experienced the thrill of riding the waves in the ocean of possibilities. The long dreary nights haunt me and the fun filled adventures tempt me. This world of mine is unstable and contradictory. I seem to be the pawn in some great game and I don't know the rules. I gather up my hopes and dreams one day, only to have them blown away into eternity the next.

I cherish the people who are brave enough to enter my world and stand by me. I despise those that lack the courage to try. I pity the ones who enter only to leave in fear. I invite you to visit me and my world. The door to my little house remains open to anyone who is willing to take the leap of faith that is necessary to enter. Let me be your guide in this wonderland of mine, and have no fear.