Thursday, December 27, 2012
My Personal Battle With Bipolar
I began my new life on a path with a name for what I'd probably had since I was a teenager but had been left undiagnosed my entire life. I was 42 years old. I'd finally felt free. Someone had a name and a treatment for the battle I'd been fighting all my life. I was no longer alone.
Until my medications stabilized, I lived through what I can only describe as a roller coaster hell of major highs and lows – mania and depression.
My doctor described my diagnosis to me in this way: I'm a 78 RPM person trying to function in a 33 1/3 world. For you baby boomers, you'll know what I mean. If you're younger than a baby boomer and don't understand the analogy, ask your parents to explain it to you.
When I'm manic, I'm like the energizer bunny. Always going. Creating something. Wanting something. Right after I got diagnosed, I jumped into crafts and started making these little wooden window seats. I didn't create one or two, or a few. I created dozens. And dozens. And boxes full. I obsessed over getting every single wooden window seat in the Tampa area so I could make something out of it. Then I wanted a puppy. (Thank goodness my husband saw fit to tell me no at that time) Then I jumped into soap making. I made pounds and pounds of soap. (All of this is in less than a week.)
One of the first things I did after diagnosis, was to purchase some books on Bipolar and read up on the illness. I wanted to know as much as possible and what I could do to help myself. I learned to eliminate as much stress as possible from my life as it's a definite trigger to a mania or depressive episode.
I learned to help identify my own symptoms that occur prior to a mania or depressive episode and take action ahead of time to help ease my way out of them or through them with less intensity.
For me, heading into mania my symptoms would be:
5.over excitement and restlessness
6.spending too much money
7.increased self esteem
8.loss of interest in food
9.starting too many projects
10.unable to sleep
Heading into depression my symptoms would be:
1.no interest in other people or activities
2.feeling tired all the time
3.disinterested or sad
4.low or no motivation
5.sometimes can't get out of bed
6.very low self esteem
8.pretend to be happy on outside but unhappy on inside
9.might turn to food, or find food less appetizing
10.thoughts might turn to harming myself (depending on how low the depression is)
How do I cope with this? I have an agreement with my husband, my therapist, my psychiatrist and my family doctor. Whoever I can reach, gets notified that I'm experiencing these symptoms and I need help. I immediately cut out everything in my life that isn't a priority. I stay as calm as possible. I go for a walk. I read a book or watch a movie. I take lots of breaks and make sure I take the extra medication my doctor prescribes.
But, to me, being Bipolar feels like I'm an alien among the rest of the human population. I react differently to various situations. I don't feel like I have the same emotions. What makes some people cry or laugh doesn't for me. I know a lot of it is because of the medications I'm on. I no longer view the world through the same window as other people do. I feel different. Isolated. I have the disease no one wants to talk about. Mental Illness.
I also have Generalized Anxiety Disorder and Panic Disorder. With all of that combined, it makes for a very stressful person. I'm constantly anxious, nervous, overeating, clenching my jaw (not great for my TMJ), losing focus, breathing shallow, having my heart race, and staying tense. I'm not able to concentrate on anything except the thoughts or words that are repeating in my head feeding my panic.
I cycle from manic to depressive to stable on an irregular basis. There is no predicting when I will have the next cycle. My medications are really good at keeping me as stable as possible. But that hasn't always been that way. My symptoms come and go and I usually experience some degree of a symptom. I’m always aware of my illness, but there are many times when I’m stable and go about my life knowing that I am a capable, productive part of society. I go to the grocery store, get my hair cut, take my dog to the vet. Normal, everyday activities. I think that all of those places have been extended into my comfort zone. However, being aware of my illness, I know there are places or activities that I just won’t do because I don’t want to trigger an episode. Like crowded places, or unknown places that might cause me stress. I can handle the mall for short periods of time. I usually park outside the store I want to shop at and go directly to it, instead of drifting through the mall. However, when I'm stable, I do like walking through the mall. So, it all depends.
My cycles don’t follow the calendar. I don’t know that I’m going to slip into a manic episode on a certain day. I can’t predict that next month I’m going to be depressed. They just happen. There really is no rhyme or reason for them. I do have a bit more control over my anxiety and panic. I just don’t put myself in situations where an episode might occur. There are occasions when panic still happens. I use one of my coping techniques, and/or take an Ativan, and wait for it to go away.
I definitely hide my feelings and reactions when I’m around other people. But, I’m so careful to make sure I’m not ever in a situation where something like that might occur, it’s very rare for me to end up in a severe state around others. My husband is very good at helping me recognize when an episode starts and he’ll help me by being proactive. He can tell sometimes before me, when it would be time to take an anti-anxiety pill, to head off a more severe reaction.
Only a very few select people know the depth of which my illness carries me. Some friends know that I have an anxiety disorder and am not always comfortable outside my normal comfort zone, like my house. I rarely accept invitations for social functions because I’m afraid I’ll have an episode while I’m there. Mostly, the episodes start before the function begins. I get anxious just thinking about going. Even out of the few select people, I don’t think anyone knows I’m Bipolar. I have a few online friends that I consider a support group, that know I’m Bipolar. I’m not ashamed of it. I just don’t think people truly understand the illness. For me, early on when I was diagnosed, I didn’t think I was capable of explaining it to people. Now, it’s just become habit not to say anything. I guess the longer I don’t tell others, the harder it is to say, “look, I’ve had this illness for all these years and never told you.” Bipolar has gotten some really negative press on television and in the newspaper and I don't think they present the disease properly.
I heard someone describe someone else one time and they said she was “useless” because she was Bipolar. It made me cringe. But, it also made me stay quiet. How could I share my story to this person who had such a preconceived notion about what Bipolar was all about?
Before I was diagnosed with Bipolar, I had major mood switches. I’m sure it was difficult on my family to know “which person” I’d show up as next. But, they’d lived with me like that for so long, it was just “mom being mom.” The anxiety and panic disorders were more difficult for my family to accept. Mostly because I wasn’t usually afraid of anything. I rode a motorcycle, I loved roller coasters, and I’d jump in the car or on a plane to go anywhere. All of that changed. My family had to change with it as well. I started making excuses about why I couldn’t do certain things, knowing that I was disappointing my family, but unable to control myself or the situation any other way. When I was diagnosed and started receiving medication, it was easier to work up to certain activities. I would go to the amusement park again, but I didn’t ride the roller coaster. I had to give up my motorcycle, but that didn’t mean my husband had to give up his. Trips were still difficult; but appropriately medicated, I could tolerate them. I was able to participate again with my family instead of being an outsider, looking in. But, I still find myself making excuses first when asked to do something outside my home environment.
Going back even further, I spent more time depressed as a child and a teenager. But, as the oldest child, and being from a family with step parents and adopted parents and seven children, I didn't get much notice. No one even noticed when I wanted to kill myself at age 13 when my adopted father took me to bed after telling me about sex for the first time.
When I had my children, I went through major manic phases with my hormones totally out of whack. No one understood what was going on with me. I didn't even know. We all just thought it was me being me.
After my divorce, I went into one long manic episode that lasted several years. I had several sexual exploits, I spent money like it grew on trees, I lost weight, I acted totally out of character. I did things I never would have done if I were stable.
As always, what goes up, must come down. And, in the case of being manic, once you go up, you must come down. And, after a manic episode, comes the depression cycle.
At first, my depressive cycles didn't last very long, then I was back to manic. I cycled fast. I'm what
is called a “Rapid Cycle” Bipolar.
On a manic high, I dated a guy 11 years younger than myself. We told ourselves it was just for fun and not to get serious. Well, I started to get serious, then he started to get serious. But, when he got serious, he backed away and left our relationship. Devastated me. So much so, that this was my second attempt at wanting to kill myself. I had the pills and the alcohol. I could just combine them and no one would know until they found me. But, I don't know what stopped me unless it was my religion telling me I don't believe those who commit suicide go to heaven. But, instead, I wrote in my journal. All night, until I got over the urge to take those pills.
Things happen for a reason, and I truly believe that. That guy was just an interim until I met my best friend, my soul mate, my husband. We were married in 1998, and he went through a lot with me. My Grave's Disease diagnosis. My Spinal Stenosis diagnosis. And, finally the big one. My Bipolar diagnosis.
However, about the time I knew my husband, I was on a major depressive cycle, and I kept it well hidden. I was always pretty good at that. I acted happy on the outside but wasn't happy on the inside. When I was on my manic highs he just thought I was being extra creative. And I was. And, he just thought I was being me. You see, I had earned a nickname back from a long time ago, “Loopy”. And, it stuck with me all through the years. And, I lived up to it. I was definitely “loopy”.
I think my husband doubts my diagnosis at times. Only because I tend to be “stable” most of the time with medication. He wasn’t with me during my past “out of control” life. I remember that time when I was totally oblivious to my symptoms, not knowing what I was going through. or how they were affecting me or the people around me. I look back on that part of my life and I'm so grateful that I didn't get into serious trouble or hurt anyone. He only sees me now, with mild swings as compared to the way I was before medication. If I ever went off my medication, he might then see that other side of me. That really way out of control me. I hope to never do that though. With health insurance the way it is, there’s always the chance that I might not be able to afford all the medications I’m on. I don’t even want to think about that.
He's a really good judge of my moods and my anxiety level now. He can tell almost immediately if I’m cycling into a manic episode. The signs are quite clear to him. I start talking really fast, I call him incessantly for the smallest things, and I start taking on more projects than I could possibly handle.
As for me, with the medications I’m on, I don’t have any significant mood changes that negatively affect my behavior. I am pretty much stable. When I cycle into a depressive mood, I become more housebound and less active with my friends. I tend to stop participating in activities I usually find enjoyable. This probably confounds my friends, but I try very hard to not let them know how “down” I feel. I may “disappear” for a while, but I’m not sure how much it really affects others. I do come back eventually, and when I rejoin activities, people are happy to see me. At least it seems that way to me. No one has come outright and asked me what was wrong. So, I guess I’m pretty good at disguising my moods. To me, it seems hard to keep really good close friends, because I don't share the “real” me. So, they don't really know what's going on with me. I guess you could say, I just have friendly acquaintances. I only have one friend who knows I'm Bipolar. And, well, now all of you!
I used to be a technical writer and was also working as a tech writing consultant before I became ill. The stress was too much for me, and in order to maintain a certain level of “saneness”, I had to give up my job. It wasn’t all that bad, because I had always dreamed about being an author, and this was a perfect opportunity for me to start working on that goal.
Being a creative person, I wrote quickly during my manic stages of Bipolar. The ideas flowed and I only had to write them down as fast as they’d appear in my mind. But, mania doesn’t last forever, and at times it cycles into depression. It’s difficult to write when I’m depressed. I can’t connect with my characters or the story. I don’t feel the desire to put words to paper. My doctor uses my writing as a “barometer” to determine where I am in my cycles. If I’m not writing, then we make adjustments to my medication to get me back to it. Sometimes, the depression cycles last for a while. I go through months of no writing, which is very frustrating and difficult for me. I want to write, but the desire to write and the creative forces behind my writing aren’t there.
As part of my medical treatments, my doctor would like to see as few manic episodes as possible. However, I miss those episodes because I felt like I could really harness my writing spirit and capture the ideas that would burst in my mind. I’ve learned to make sure to capture those ideas and write them down before they’re lost forever. I keep binders full of ideas that I’ve thought about while manic. That way, when the mania goes away, I still have the ideas to help me during my “normal (stable)” times. I do have episodes of normality. I can write effectively and with passion. My characters speak to me and I tell their stories when I’m stable. I’ve learned to harness my other writing talents to coincide with my Bipolar cycles. If I’m not “in the mood” to write, I work on other parts of my writing career like promotion and public relations.
I've kept journals for many years and it's never occurred to me to ever doubt my diagnosis. It explains so much in my life. My past is littered with uncontrollable manic episodes and deep depressive cycles. Reading back through my journals only corroborates those times and makes me see them more clearly.
I don't know if I've ever willed myself to get better or cure myself, but I've begged God to make me better. And I've used “self talk” to try and get myself out of a depressive cycle. But, I'm realistic, and I know that this is a lifelong disease. There is no cure. But, that doesn't depress me. It only makes me work harder to find other ways to deal with my illness and to keep stress down in my life.
I do try to keep a healthy lifestyle. I think if you’re eating healthier, taking care of yourself, getting exercise, it’s all going to help. I take vitamins and supplements every day, as well as my medications. I think that they’ve helped me maintain a level of stability that I wouldn’t have otherwise. They’ve given my body the extra boost it needs to deal with my illness. Stress, bad eating habits, too much sugar or caffeine, and irregular schedules can all wreak havoc on my illness. By watching what I eat, avoiding caffeine and getting enough sleep, I know I’m taking steps to lessen my chances for an anxiety episode which can then turn into a manic episode.
Medication side effects are always an issue. Most of the Bipolar medications cause weight gain. Usually those with anxiety issues are compulsive eaters or emotional eaters as well. I know I'm an emotional eater. My weight ballooned to 247 pounds. I'm only 5' 4”. I fought hard to lose the weight. My doctor helped as well by adjusting my Bipolar medications. It took over three years but I've lost nearly 100 pounds.
There are times when the medications lose their effectiveness. It's usually the anti-depressants. So, the doctor slowly stops me from taking it, lets my body readjust to not having the medication in my system, then slowly reintroduces the medication back into my system making it think it’s new. That’s rough on me. It takes around six weeks to do this. A very long six weeks. Sometimes it works. Sometimes it doesn't. Then the doctor has to find a new anti-depressant that I haven't tried yet and see if that works.
This past year at the end of 2007, I went into a very deep depression. More than likely caused by the ineffectiveness of my medication. I usually hear voices, but they're mostly in the background and they don't bother me, but this time they were talking to me. Making me scared and panicky to drive. Why? Because they wanted me to run into a tree. Or head on into traffic. My choice. So nice of them to give me a choice, don't you think?
The voices continued. I told no one. I kept up a happy front while I stayed sad on the inside and struggled with my voices. This was before I had a therapist, psychiatrist, and an agreement with doctors. The voices grew more insistent and louder. They were all I could think about. One time when I was at my doctor's office, I blurted out what was happening to me. We discussed it, the doctor asked me if I had any thoughts of suicide, I said no, and he made some adjustments to my medications.
But, the voices continued.
This time, the voices told me to pick out a tree. So I searched for one. And found one. A nice palm tree on a corner. With a sturdy steel pole behind it, in case the car went through the tree. Perfect tree the voices told me. I felt proud.
So, I told my doctor the voices wanted me to find a tree. He suggested hospitalization. I pleaded with him not to put me in the hospital. He asked if I'd see a therapist. I agreed.
I found a great therapist. She and I clicked immediately. She evaluated me and had me sign a “no suicide” contract. It was easy to sign. I didn't have any thoughts of suicide. The voices hadn't told me to run my car into the tree yet.
When I got home, I finally told my husband what had been happening and his solution was to take my car keys away. Reasonable solution, except it turned me into a prisoner and made me dive deeper into depression.
The voices and I devised a plan to get the keys back so I could have the car back. We told my husband the voices were gone. That I could drive again. No problem. We told the therapist, no more problems, I can drive again. I feel much better.
I got to drive to the doctor's office and had to pass that tree. As I drove past it, it took all my effort to keep from turning into it. The voices pushed me to drive into the tree. I couldn't do it. I got to the doctor's office. I couldn't lie to him. I told him I found the perfect tree. He was immediately on the telephone with the hospital to admit me. Here in Florida it's called a “Baker Act”. It's when the patient is admitted involuntarily.
I stayed in the hospital for six days. Six long days. I was on suicide watch. I didn't understand why. My weapon of choice was a car. How in the heck was I supposed to get a car up to the 4th floor of the hospital?
My psychiatrist changed my medications. Took me off some. Put me on a new one. Slowly over the six days, the voices went away. The urge to drive into a tree went away. And, best of all? I got happy. I'd been sad for so long, I couldn't remember. But, the difference was breathtaking. Unbelievable.
When I left that hospital six days later I was grinning from ear to ear, and not just because I was leaving, but because I was genuinely happy. I got home and I was happy. I heard a song on my iPod while I was walking the next morning and I knew it was meant for me and my new lease on life, “Walking on Sunshine”.
And, I've been happy and walking on sunshine ever since. My husband took me to Hawaii a few weeks later and then a week after that my daughter gave birth to my first granddaughter.
Getting hospitalized was one of the best things that could have happened to me. I have a new outlook on life. New medications. Less anxiety. Less panic. And, more happiness.
Addendum circa December, 2012
Life hasn't been all roses and rainbows since I last wrote this blog. I thought it was important enough to resurrect and give you a more in depth glance at what life has been like since 2008. Since then, my diagnosis of Bipolar Disorder II has changed to Bipolar Disorder I.
I was hospitalized again in November of 2009, around the same time I was receiving a lot of pain injections for my low back. That whole year I got to spend almost all my time with my granddaughter, the sunshine of my life. Then her mother decided to move to Arizona and I lost my sunshine for many years. She still has not returned to Florida but there is hope for 2013.
I also had a number of surgeries all within the last quarter of 20111 and the first quarter of 2012.
Bilateral Tube Placement
Uvulo-plalato-pharyngoplasty - (UPPP)
I had the above surgeries all at the same time.
I had more injections in my lower back. Concluding with a Lumbar Medial Branch Block and a Lumbar Radiofrequency Ablation.
Then I had surgery on my left arm. The Ulnar Nerve and Carpal Tunnel.
Less than a month after my surgery, I was hospitalized again, for two weeks.
Within two months, I was hospitalized again for a week for depression. Deep Dark Depression.
After that, my psychiatrist decided to send me to a residential treatment facility to work on the deep dark depression that had taken over my life. It was a facility in central Florida, far from home. My husband could only visit on weekends and only after he made suitable arrangements for our pets.
It was a lonely time and I made a few friends, but I knew I was there to work on myself. And I did that with a vigor I hadn't shone in months. I was determined to get better, and with that good attitude I left the residential treatment facility in a month.
After I returned home, a week later, my back went out on me, and I was hospitalized for 3 days with no movement and heavy pain medications.
I ended up with a sacral facet branch block and eventual sacral RFA procedure in late 2012. Around October.
Shortly thereafter, I went into a downhill spiral so fast and deep it even scared me. I attempted suicide by taking pain medication. After I realized what I had done, I called my husband, and he had me call 911. While I waited for the emergency vehicles to arrive, I knew I had not made a good choice. My husband arrived after the police, and he was able to better explain what had happened and that I had Bipolar Disorder. The police wanted to Baker Act me immediately, but my husband talked them out of it, explaining that my psychiatrist could better treat me at his hospital. So, off I went to the ER for 6 hours of observation. Then a quick trip home to pack a bag, as my psychiatrist was admitting me into his hospital.
I spent 4 days there, getting medication changes that helped along with behavioral changes. Mind or Matter.
And I learned that I do matter. And I learned to figure it out with my mind that I matter.
Best of all, I created a living document that is called a Wellness Recovery Action Plan. It's become my GO TO for anything that triggers me, how to respond, and what action to take. It's taken on a life of its own. I keep it in a binder with my medication list, my physical history list, which includes allergies, immunizations, diseases / disorders, and all surgeries and procedures. Best of all it has the dates of every psych hospitalization. At the back, I include my will, my living will, and a durable power of attorney for health.
If anyone has questions on how to create your own, don't hesitate to ask. I'd be happy to help and point you in the right directions.
So, whether you are running on full, half a tank, or empty, your WRAP can be there for you and help you find the answers and especially guide you.