Editor’s Pick
MARCH 25, 2009 1:05PM
Things I can tell you about mental illness (Part 1)
I have had this written for a while, but had delayed posting it. Yesterday, excellent posts by Jon Gregory and MoniqueC convinced me to go ahead and throw my hat into the ring with the start of my story. In parts 1 and 2 I am mostly trying to get out the flow and facts of the story. I want to use part 3 to talk more about how I felt and coped (or didn't) through this experience.
Introduction
6 or 9 months before we got married, she went on birth control pills to control horrible cramps that she was having. The pills were like a shotgun to the head. She immediately started having wild mood swings every couple of hours. They tried different pills for a couple of months and eventually gave up on them since each pill just jerked her around more and more. This was the start of the worst period of our lives.
We were in college at the time. The school psychiatrist put her on an anti-anxiety drug that seemed to help a bit. Later we took her to a family friend who was a psychiatrist. He thought that she had bi-polar and put her on lithium in addition to the anti-anxiety drugs. I had only heard of Bi-Polar once: in Psych 101. I distinctly remember thinking "that is really strange" when I read about it and then dismissed it. Oh the dramatic foreshadowing...
She was doing a little better so we went ahead and got married. I was somewhat apprehensive about this at the time (I never said anything to anyone) but I remember thinking that "in sickness and in health" was getting an early start and that if I couldn't commit when she was sick then we shouldn't get married. I knew I loved her and had nothing but tenderness and sympathy for her condition. I had had some depression in my teens and during my freshman year in college, so I understood how it warps your thinking, and also that it would pass (I was mistaken on the latter point).
After we got married, I had one semester to go in college and we had an off-campus apartment close to school. I remember her waking up in the middle of the night to clean the bathroom. Night after night. I wasn't sure what to make of this.
We made it through that semester, graduated and I found a good job that had an hour+ commute. We moved to a place half way in between our college and my job. Someone at her home church donated a car to us so we could each commute. She had a fellowship that year--even though she was an undergrad. She was going to be co-teaching some classes and doing some research with a professor in her department.
She didn't make it. She had to drop out in the middle of that semester.
The Nasty 90s
She started becoming extremely sensitive to sounds. She couldn't tune out the sound of my typing in a room across the house. Each keystroke was a blow to her head. The kids in the parking lot of our apartment building would drive her up a wall with their noise. She was seeing a psychiatrist regularly now with a diagnosis of "atypical, ultra rapid cycling bi-polar disorder." Our medicine bill was around $1600 a month. It would be reimbursed by health insurance 6 weeks after we paid. Since we had to have new meds every month, we were getting into more and more of a cash-flow crisis.
She made me promise that I would never commit her to the psych hospital against her will, I made her promise in turn to never lie to me about how she was feeling and to get help before it got that far. She was terrified of Electro Shock Therapy. I don't know why. I don't think it was ever really on the table as a treatment option.
She also started having cutting fantasies. She would describe them as pressure building under her skin and how she had some ornate sacrificial knife in her head that she would use to let the pressure out. To my knowledge, she never actually cut herself, but there were some pretty significant fingernail marks on her arms. One night, she said that she no longer thought about the fantasy knife and was thinking about the knives in the kitchen. I asked her if we needed to go to the hospital and she said "yes." I took her to the closest emergency room. This was to prove the first of 6 times that we hospitalized her for being suicidal.
That hospital did get her stabilized with medicines in about 10 days, but I will curse them until the day I die. Their idea of therapy was to insist that her parents or someone had abused her as a kid or that she was doing drugs that she wouldn't tell them about. Her parents are the most wonderful people on earth and both of us told them that. She had never taken any drugs other than her prescription medicines--and never abused those. But they kept insisting that there must be abuse somewhere for this to happen. This totally closed her to any options that included therapy. 12+ years later we are still struggling with this.
This trip established a pattern for me that continues to this day: the buildup to getting her hospitalized is horrible, but the moment she is there, I feel a ton of relief. I would only see her a couple of times in a 1-2 week stay, and then only for a short time. Some people think that it is odd that I wouldn't spend every waking hour at her bedside when she was there, but that was my time off. She was in someone else's hands who (hopefully) knew what to do. I could go see movies, clean the house, walk, go to concerts... I could--and did--relax for the first time in months and months.
We had to break lease early on our apartment because the noises were too much for her. I remember that they had a lot of sympathy and didn't charge us anything like what they could of under the contract. Now that I write this, I wonder if it was sympathy or fear of a potential suicide on their property. In either case, it could have cost us like $5000 to break that lease and it didn't.
The whole time that we lived in that second apartment she looked sexy as hell, but she kept loosing weight. I never saw direct signs of an eating disorder, but I was nervous about how much her hips projected. She wasn't anorexic thin, but she was model thin. But she did look good. Pale white skin, freckles, natural auburn hair. Wow. The only other thing I really remember of that place is that we had outstanding sex there--assisted by the mirrored closet doors in the bedroom. Funny how memories that fantastic could be in a place otherwise associated with such horrible experiences.
I don't remember much from the rest of the 90s. I can recite the places that we lived in, job status etc, but I don't have visual memories or very many stories of any of it. It was just to bad, and was a gray haze. We have no photos from this time either.
I finally left my job and my career because we were maxing out the credit cards trying to keep up with the medicines and the co-pays and I couldn't see anyway around that. I switched to computing because I knew I could make more with it and have better health insurance. I had to tell each new employer/project manager about her to prep them for why I would have to sometimes miss work with little notice.
The last two times my wife was hospitalized were especially memorable.
#5 was because she kept having seizures. 45 minute long ones. They would be preceded by hot flashes so she would strip naked, then she would start a seizure and call 911 and they would come and take her to the hospital. They kept thinking it was because of the lithium that she was taking, but the blood tests kept coming up normal. They would decrease the lithium and increase the anti-anxiety medicine and the anti-seizure medicine. And she would keep getting worse and worse. This happened 9 times in 2 months.
The last time, she looked like someone had beat her up with a baseball bat. Huge pool of blood, blood smear where she crawled naked to the neighbor's house because she couldn't dial 911. The emergency room wouldn't call me because they thought her heavy bruising was spousal abuse and she was in denial. I happened to be working at the City of Bellevue in the police department all that day so I had lots and lots of uniformed witnesses. They finally called me like 6 hours later. If I had made it home without that call, I would have thought that someone had killed her and dragged away the body. Cleaning that blood pool was one of the saddest things I had ever done.
For #6, I was working on a job in Olympia. It was right at the end of the job when things are the most stressful. I also knew at that point that I was getting laid off at the end of the gig because my office was closing. I remember the client's project manager taking me out to dinner where I just sobbed.
These two were like 9 months apart. She had started seeing a new psychiatrist/neurologist after the seizure episode. He was like House. He would diagnose you and get the medicines figured out and then would turn you over to someone else for maintenance. He told us in his initial meeting that he thought he would have things figured in in 6-10 sessions. That was 2001 and she is still seeing him because she is just so twitchy on the medicines that he can't turn her over easily. He figured out that she wasn't really bi-polar but had a form of epilepsy that caused all of the mixed moods and mood swings. The seizure episode gave him the clues.
It was the anti-anxiety/seizure medicine that was causing the seizures. This medicine is highly addictive and is only supposed to be given for short terms. She was on it from 1994-2001. She would feel worse every time a doctor tried to get her off if it so they always kept her on it (duh! addiction!!!!). The last hospitalization got her completely off of that drug and over the withdrawal symptoms. The doctor then got the rest of her medicines more or less straightened out and we entered the calmest period of our marriage. 2001 through early 2008.
[to be continued...]
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Comments
Thank you so such for this clear, honest, detailed, eloquent post. I honor your love and commitment. It sounds like her therapy wasa disaster. Their trying to alienate her from her parents is gross malpractice. Some people find cognitive therapy is very helpful for bipolars, not mucking around in their past.
It is so hard to distinguish the underlying illness from the effects of the meds you are taking. For many bipolars, anti-seizure drugs help. Psychiatrists have no idea why. I did absolutely terribly on depakote, but lamictal has been extremely helpful. Was she on depakote?
Sometimes three drugs are worse than one. Psychiatrists need to learn to subtract drugs when they add a new one. All the mood stabilizers are now generic, so the atypical anti-psychotics like Abilify are the new magic elixirs.
I am afraid very little is known about the long-term effects of these drugs. Mental patients are all psychiatric guinea pigs. I eagerly await the rest of your story and hope you will continue blogging about mental illness.
1_Irritated_Mother: I will get to that more in 3. I am an accomplished sob'er.
MoniqueC: I will be in touch after work. I read a bunch of your blog and we have a lot to talk about.
new blog: I grew up in the 80s (graduated from HS in 1990). I think our generation is afraid of therapy because of the TV view of it from the 80s and afraid of meds because we were the Guinea Pigs in the 90s. My wife carries a HUGE case of medicines with her when she sees a new doctor because it is easier to show them than to tell them (she also has a more or less up-to-date list that she hands over). Part 3 will also talk about my thoughts on doctors and meds.
Redstocking Grandma: My wife's diagnosis is hard. At first it looked like bi-polar, but she cycled too fast. Now it looks like epilepsy but with (what I think of as) mood seizures instead of muscle seizures (and sometimes both). She has been on so many meds for so long that I think they are--at the very least--a part of the ongoing problem. I sometimes fantasize that if she were a computer that I would hit the reboot button so someone could figure out what problems are really there vs which parts are the medicines. Again, more on this on part 3.
K has been on almost everything at one time or another. Depakote and Lamictal were two. I remember them being significant, but for the life of me, I cant' remember which (both?) were helpful or hellish. One or both were involved in the whole "pool of blood" episode.
I don't think an accurate listing of what she has taken even exists. There were so many doctors and so much flux that I would bet that, at best, they only have a running change log with some periodic baselines.
Coordination between the medical disciplines has been distinctly lacking. K's body doesn't seem to care if it is a food allergy, a thyroid issue, female hormones, anti-seizure med, mood stabilizer etc. Our divisions don't treat the holistic individual with complex problems. They all jerk all of her systems around.
Her issues are greater than the sum of all of the component problems (if that makes sense), but specialists keep treating only the parts they know about. (To someone with only a hammer, all problems look like nails).
I keep thinking that a long-term pill tracker application would be a killer iPhone app. You could record your overall doses and what you take when, and then email the results to yourself and your doctors. Of course, just like calorie counting, the record keeping is a major PITA.
Rated.