Mild Apprehension
On Thursday, K and I leave for a visit out to see her family. When she and I first got together, they weren't very supportive of our relationship. They were civil to me, but not too friendly. We then moved many, many miles away and only saw them on the occasional holidays.
K was the first person in her family to move more than 30 miles away, and I believe the physical distance contributed to the emotional distance. Still, neither K, her parents, or siblings seem quite certain how to communicate with one another. My parents, who also live far, far away, call weekly. K's rarely call and she rarely calls them. But that may be how they are. I believe it is the proximity effect. Because when we are within 150 miles, her parents call more frequently. Odd. That said, my mom does the same thing.
Despite their misgivings, they did come to our commitment ceremony, which took place a little less than 4 years into the relationship. After that, things improved slightly. K's heart attack marked the next big improvement in the relationship.
However, the final bit came when they came out to help when K had ECT last October. She was extremely depressed and the anti-depressants weren't doing it. She had recently been diagnosed with bipolar disorder, so she began taking Lamictal. But Dr. X was taking a conservative approach towards the dose to prevent The Rash from setting in. It turned out his conservative approach was fully justified. Meanwhile, K was without meds. Lamictal never did work out, because she kept hovering on the cusp of the rash. Finally, when she hospitalized 5-6 weeks later, Dr. X put her on lithium.
She had heard of ECT in the '70's. Then the psychiatrist I was seeing, for I did go see one for six months to get through this, asked about it. We heard about it a couple other places. K decided it was worth pursuing.
Dr. G, not Dr. X, performed ECT. Dr. G pushed very hard for K to have the procedure done as an in-patient procedure. K refused, but we did tour the psych ward together. As a result, K's parents came out to assist us, and allow me to continue to work throughout all of it.
It was that time last October, when her parents absolutely changed their minds about the relationship. They saw how we interacted and the fact I cared for her and didn't leave when things got so bad. Since then, the relationship has been much easier. Last Christmas, they even asked if we were coming out to see them. Our approach has been to alternate traveling one year with staying at home the next and last Christmas as an at-home Christmas. But it was nice to be asked.
Returning briefly to ECT, K had 7 ECT sessions in total. Her memories for approximately 10 weeks surrounding that period of time are gone. And there have been lingering side effects even 11 months later. It didn't help whatsoever. But, I don't regret that she did it. Driven to desperation, it was necessary for her to exhaust every option. If her fear of ECT had won out, she would have berated herself for months that this proven relief (80% of patients experience improvements) for depression had frightened her too much to try it.
Regardless, we're visiting K's family this weekend. This is the trip that last year marked the last good weekend she had for months. She had done well throughout Summer 2003, and then we had a great time on the family visit. But after her return home, she began to go further and further into the depression, then had the ECT, and finally ended up hospitalized.
It is no wonder that the association of the trip has me concerned. I believe that she is more stable, significantly more stable. Her doctors have a handle on the disease and her meds are under control. But it will be the first big trip in a year. And that type of change may have a negative effect.
I keep reminding myself we'll take it slow and take breaks when necessary. Wish me luck.
Recharging
Things are continuing to go well. Although, I write about exhaustion, much of it has lifted. I no longer feel the energy-seeping exhaustion in my bones the way I did six months ago. Rather, I am able to do things, and afterwards I become tired. The key is that I am able to go do things.
This may seem like a very low standard. But it isn't. During the winter, a month or two after K's hopsitalizations and once it became clear that she was going to improve, I couldn't move. I went to work and came home and by 8:30 pm, my mind was so clouded that I couldn't think. My body gave out on me. I attribute exercise as the only reason I did not end up ill.
At that point, K sent me away. She was worried that she wouldn't be able to make it without me, but it was m0re important to her that I leave so I could have a break. She sent me across the country to visit my closest friend. Before I left, we made sure our friends knew I would be gone and that K may require more from them.
Up to my trip (which was only 5 days) in February, K worried. She couldn't get out of bed the day before I left, because she was frightened of what would happen. Despite that, there was no talk of my canceling the trip.
But the anticipation was worse than the real thing. The day I left, she was fine. She worked all day and the next. When we talked on the phone, she was busy watching movies and not preoccupied at all by my absence.
It was after February that I can tell I started to recover. The worst had been over since New Year's and I began to trust that it wouldn't fall apart again. During that trip, I began to talk about what had been happening and I spent some time crying over the pain and difficulties we had gone through. I was ready to stop having to hold everything together and to believe that I could relax again.
What I am trying to say is that I am well aware of my moods and my need for time to recover. K worries that I am dwelling on what happened. She doesn't like any reminder that her illness put me through hell and that it caused me pain. I am supposed to be happy-go-lucky, not bruised and weakened. For me, it is more that I am working through the past months and putting them to rest. This blog is helping me put the emotions and events into a perspective.
Blondzila asked me to make sure to make time for myself and recuperate. I appreciate the concern and I am careful to take care of myself. I work out as a stress-reliever. I spend time with the dog. I meet up with friends for coffee or to have drinks and spend time together. Things allow me some time for myself.
One of the themes in these posts is that I'm not healed from these experiences. But K and I are both moving into the "well" spectrum. We are on the low end of "well", but we're moving up on the scale.
Healing
I'm trying to determine where I am in the healing process. The experience with K and having to be the strong one for so long left me feeling exhausted, bruised, less in control, and generally limited in my ability to cope.
Many of those emotions have gone away or lessened with time. But then something triggers those memories and I can feel them washing over me again. My muscles begin to tense in my back, tears prick my eyelids, and an overwhelming sadness envelopes me. In short, I want to curl up and cry myself to sleep in hopes that the pain will be gone when I wake.
Reading
Dooce's post for today was a trigger. I can remember clinging to my belief that going to the hospital would make K better. It would bring back the K that I knew and loved.
As it was, her hospitalization gave me a sense of relief. No longer was I the only one holding things together. Someone else was responsible for her well-being and safety. Simultaneously, it was exhausting. Instead of going home after work, I would go to the hospital. After a few days, I figured out that I was better off buying something at lunch, which could serve as my dinner.
One of my greatest feelings of failure occurred when I had to send the dog away, because we/I was no longer able to care for her. I wasn't home enough and she needed attention and time that wasn't mine to give at that point. K needed everything I had. After dropping off the dog, I had to quickly leave, because I didn't want to break down and cry. That act of dropping her off crystallized everything that was wrong and meant that I could no longer deny the seriousness of the situation. I was able to pick her up two weeks later, so she was home when K returned from the hospital a second time.
Initially, I expected that everything would be right as soon as the right medication was found. There were two hospitalizations for bipolar disorder. (There were two other hospitalizations for other reasons.) The first hospitalization, the doctors continued the ECT and didn't start any medication. She was doing well and they released her.
K managed to stay at home four days. During that time, she sank into a psychotic depression spiral and was the worst I had seen. She kept going deeper and deeper. When we went to a psychiatric appointment on the fourth day, she told Dr. X that she was going to kill herself or that she couldn't guarantee that she wouldn't. Like many bipolar patients, she had her plan extensively worked out. She refused to agree to voluntarily commit herself back into the hospital. He could not let her leave his office without her agreement or he was legally bound to call the police. K believed that all he had to do was commit her to the hospital where she had been the week before. Additionally, he had another appointment waiting for him, because they only allot 30 minute time slots for each appointment. As we went through this horrible discussion, with K constantly refusing to sign in, his phone kept buzzing for the next patient.
He sent her out of the room and asked me to stay. He told me that he could not commit her to the private hospital where she had been the previous week. Instead, he would have to commit her to the public psychiatric hospital, which is more the style of the ones in the movies. They have a number of criminals committed at this hospital and a couple months later a female patient was murdered by another female patient. Nor was he legally allowed to tell her any of this. He told me I had to convince her or she would have to go to the public hospital. He told me the law prevented him from committing her to a hospital where he had privileges.
For the next 45 minutes, in the waiting room, I pleaded, cajoled, begged, and appealed to her in every possible way to sign herself in to the hospital. But, I never told her she would have to go to the public hospital. It would have been the embodiment of all her fears regarding psych wards and verging on blackmail to put her in that position. Despite that, she would have become more intractable. Thank god, once I convinced her to go, the hospital was only a short walk away. Even so, I feared she might change her mind, but she was resigned at that point. It was humiliating doing this in a public space of the waiting room, but I was desperate to protect her.
K doesn't remember any of this. The combination of the ECT and the medications (Seroquel and Klonipin) have wiped out her memories. The ECT has destroyed her memory completely for a 10 week period and for intermittent periods throughout the rest of the year.
Immediately at the second admission, they started her on a strong dose of lithium as well as anti-anxiety drugs. She cried for three days in a row before starting to come to grips with herself and the diagnoses of bipolar disorder. Our friends visited and finally managed to get a smile from her after three days.
When she was released, after a week, I thought that things would be better. I had an idea that my hopes might be too high. The doctor (not Dr. X) recommended a partial hospitalization program, where K would go to an outpatient program 6 hours a day for therapy with others. K hated the idea, but I put on the pressure and she agreed to attend.
I credit that program as one of the things that saved her. She hated it, but at the end admitted that it had helped. It forced her out of the house and to interact with other people. And it made her get back on a schedule. Within a few weeks, she was attending part time and working part-time. It provided a foundation to make the transition back to work. I think it would have been significantly more difficult without the partial hospitalization program.
Now, 10 months after the release from the hospital and we are just getting back to normal. The hospitalization sent her onto the right path and it was necessary. But it wasn't the end. Rather, it was the first step towards healing. I'm more than ready to be healed.
Quick Note
I've been too tired and too busy to blog lately. With some luck, I'll have time tomorrow to write a longer post. Otherwise, things are going well. It's been a good week; we're just both tired.
Bipolar Support Groups
Surfing the 'net this afternoon, I found BPSO, you can see the link to the right. The acronym stands for Bipolar Significant Other. They appear to have a good list of resources and a e-mail list to support the significant others of those with bipolar disorder. This is one of the first serious resources I've found.
Now, I'm trying to decide if I want to join the e-mail list or not. Part of my decision is whether I want to open myself up to hearing about other people's heartrending stories. My story is going well and even though it requires constant work, K & I don't go through daily crises.
I haven't decided yet about the e-mail list. On one hand, the support and information would be very valuable. I'll probably talk to K about the whole thing before making any decisions. But I did want to put out the information for others to use.
Celebrity Spokesperson
Bipolar has its own celebrity now. Jane Pauley announced at the end of last week that she was hospitalized for bipolar disorder and is now on lithium. I've included two news articles here as links one from
CNN and the other from
USA Today.
The USA Today article emphasizes that Jane Pauley was fortunate in that she promptly received treatment and was able to stay in a top hospital. The comment is made at the end of the article that there is a high suicide rate for people suffering from bipolar disorder, due to a lack of treatment.
Being diagnosed and finding the right treatment can be very difficult and disheartening. The last thing that anyone wants to do when they are ill is go around trying to find a doctor who is able to help them. Paired with the lack of parity in mental health coverage, it also adds the stress of not knowing how much the illness will cost.
When K was hospitalized last year and when she underwent ECT, we paid out thousands of dollars. Fortunately, we are able to afford it, but even so, it was additional stress on both of us at a already extraordinarily stressful time. She wasn't working, our savings were quickly depleting, and K wasn't getting better. And we have good coverage. I can't imagine making the choice as to whether or not you can afford the treatment and medications. Even if you can afford treatments, finding the right physician may be too much.
I met other caretakers while K was attending an outpatient program, who were not so lucky. They had difficulty finding doctors who were willing to share information with the family caretakers, the ill family members were belligerent, and the caretakers were struggling to find support for themselves.
I haven't gone actively searching for a caretaker safety net, but it feels as if there is very little available. Jane Pauley is very lucky with her disease, but I hope she's able to speak out on behalf of those, who are not in a situation where they are able to find care.
tired
We got too tired last night. Hair cuts were scheduled for 6:45 pm, already a bit late, but it's difficult to get in there. We went for an early dinner beforehand and received a call that the stylist was running behind by 20 minutes. We show 20 minutes late and were told that it will still be another 20 minutes. Fortunately, they had wine, so I had a couple glasses (small ones) while waiting. I could see K was ready to pass out from exhaustion.
I tried to reschedule but all the appointments were either really late or two weeks away. Neither option was acceptable, so we stayed. By the time we made it home, we were both exhausted.
But, other than exhaustion nothing bad happened. Neither of us lost our tempers, K didn't start to spiral, we had already eaten, so no ill-tempered behavior due to lack of food. This is the positive side. By eating first, we were able to deal with the irritation of our stylist running behind, instead of starving and getting really pissy about it.
I'm glad it's the weekend, but I'm a bit nervous. The last couple weekends have resulted in arguments. I'm going to work hard to make sure we don't have any problems this weekend. I just don't like them.
Bipolar Blogs, but still nothing for caretakers
I was hunting around today online and found several blog portals. I'm posting the address for one of them here. Any case, if you search under bipolar a few blogs come up. It appears as if more of the sufferers of bipolar are into blogging than their caretakers or partners. I still haven't managed to find any comparable blogs to this one.
eatonweb portal %3A%3A
Quick Comment
After I published my post, I was using the next blog button at the top of the screen to randomly look at other people's blogs. It seems that blogging has exploded. Or many people try it for a few weeks and drop off. Most of the blogs I looked at have only been around since July. Maybe it's starting to reach a critical mass. I'll be curious to see if these have staying power.
I'm curious to see if I have staying power.
Daily Life Continues
The good news is that everything is normal. Today is K's first day in the office for the week, which isn't the greatest. But, she worked from home the past two days, so she didn't lose all of the hours.
Her improvements are noticable. Monday & Tuesday, she woke up at 4 am and was heading towards a rage state, so out came the xanax. That knocked her out and made it impossible for her to get up at 6 am. The change is that waking in that state destroyed part of her morning, but not the entire day. She was able to get up and function after the xanax wore off. A month or two ago, it wouldn't have been possible.
It is by remembering and chronicling these little changes and improvements that we are able to track progress. At least every couple days, we say "remember what it was like 6, 9, 12 months ago, and how far we've come." It keeps our focus on the progress rather than the frustration that she can't do everything yet.
Another contractor came through today to examine our dirt floor and nasty ceiling in the basement. I'm baffled about what to do. Neither guy has given us prices yet, but they have given us profoundly different timelines, 1 months vs. 2-6 months. Prices will be forthcoming. I feel helpless, since I don't know much about this whole thing at all.
K is dreading the disruption in the house. It sets her on edge. We've discovered that she can give specific direction to those close to her, but contractors intimidate her. I'm trying to handle more of the contractor interaction and relieve her from that extra stress. Next week, we have the first guy coming through to quote us on central air. I'm hoping that we won't upset the delicate balance by pushing forward too quickly with the renovations.
Adjustment Required
I'm starting to feel as if I am throwing myself against the walls created by limitations of bipolar disorder. The day to day management and limitations of the illness and K's reactions to things going wrong are infuriating. If something goes wrong, as in last night she was unable to sleep, her immediate reaction is to lay down an ultimatum that she won't do "x" again.
In this case, "x" was going over to our next door neighbor's for a bit over an hour for a drink. As it turned out, we ended up eating dinner at 8:30 pm, instead of 7:30 or a bit earlier.
Result: K had a bad night. But who really knows if her bad night was caused by a late dinner. It might have been a result of it being a Sunday night. She frequently has trouble sleeping on Sundays. None of this really matters. But her reaction is to say that she has to stay in every Sunday night, eat early, and go to bed early. Reality is that it is impossible to parse out the effects of each action and analyze their impact on her mood and yet she still attempts to do so as a way of controlling things.
It drives me crazy! I agree that we should try and do those things and we do. But I don't want our entire life to disappear because she is bipolar. Where are the lines?
This weekend we also argued over visitors. We are having the house worked on. Things like electrical work, basement renovation, and other things along those lines. K wants to limit all house guests so she can relax on the weekends and recover from the chaos of the renovation. We went back and forth for way too long on this.
The thing is that we didn't use to argue. Are the arguments caused by the 7 years that we have been together or the adaption to bipolar disorder? I'm baffled. We're both frustrated. Our focus is that we love one another and we'll get through this in addition to all the rest of the shit we've been handed over the past 18 months. That's what keeps us grounded. I remind myself that it's not about winning, it's about creating a life with K that works for each of us.
Good news is we visited the psychiatrist again last Friday. He's very pleased with her progress. No medication changes. And instead of 4 weeks, K was able to select the timeframe for the next appointment, so no visit for 2 months. She continues to see her therapist weekly. Naturally, if a crisis occurs, she'll go in. He's also very reachable by phone at all times, which has kept us going during bad times before.
On another note, I occasionally wonder if I am too cautious about releasing my identity and personal information on this blog. The main reason that no names or places are used is that K is very concerned about the stigma related to bipolar disorder. But then articles like this
one reassure me that perhaps I'm not overreacting. I would prefer to be overall cautious than either K or I have to pay a price for the information that's written here.
For the most part, we don't conceal the disease from our friends and family. All of our family and close friends are well aware of K's health problems, even if they don't know how painful it has been. I switched jobs recently, although I remained with the same organization, and my former co-workers were aware of K's issues. She's been more circumspect with her own colleagues due to the stigma.
Continued Struggles
It seems like the only thing I do here is continually list the things that challenge me. But, it seems like maybe if I am able to write them down, then it becomes possible to deal with them and make them go away. This is the theory, anyway.
This week I decided that I am going to go to the gym in the mornings (at 5 am) and work out. My mind is always clearer and I'm better able to handle stress when I regularly work out. That said, I've been lax lately and haven't gone in two weeks. So, this morning my alarm rings at 4:50 am, an obscenely early hour. I hit snooze, something I strive never to do.
Then the bed suddenly thumped. I thought about it a minute and decided the thump must have come from K. I peered over. I wasn't wearing my glasses and I am cursed with exceptionally poor vision. As far as I could tell, she was scowling at me. I quickly withdrew my head.
My assumption was that she had another miserable night, since she frequently has problems sleeping. I began preparing myself for the news that she wouldn't get up at 6 am to go to work. But, I also decided if she was in that bad a mood, I should head out to the gym. Not that she ever is bad or particularly irritable with me, but still, do you really want to be around someone who's angry with themselves?
I dragged myself out of bed, stumbled on a few dog toys that the dog had decided were necessary to haul into the bedroom for the night. She has probably carried them downstairs to bond with them for the day. And I trotted off to the gym to lift weights for 40 minutes. Yesterday, I did cardio, so that's on tomorrow's schedule again.
When I arrived home an hour later, I was pleasantly surprised to find K out of bed and sitting at the dining room table. Turns out, she had no recollection of either the thump or the scowl and were probably part of a dream.
What disturbed me about this was my initial reaction was that K had a bad night and I didn't exactly worry, but it bothered me throughout my workout. If she needed to stay home from work that's fine. I'm not going to pressure her, but the thought that she had a bad night was niggling away at me. I'm trying to be better about letting that stuff go and reminding myself that she is a responsible adult.
It's the changing roles brought on by the illness, which can challenge any relationship. Suddenly, instead of partners, one partner may have to make decisions for the other. And, those decisions may be ones that the ill partner doesn't like. I've been fortunate in that I haven't had to make any really bad decisions, such as involuntary committal (is that right?). But still, it puts the power balance of relationships into the spotlight. And even continual small decisions can change the relationship.
K and I are at the next stage. We are working on restoring the relationship from the ill/healthy model to one of healthy/healthy. No big problems, but I do catch myself and try to stop excessive worrying on my part. She's capable of taking care of herself and she needs to do it and is doing it. That is for her sake as well as my own.
Mixed Weekend
Not sure what to say about the weekend. Friday night was bad on my part. I lost my temper, something which occurs infrequently. I don't know if it was PMS or exhaustion, all of the above, but whatever. . . . The stress got me and K's mild comments jarred every nerve in my body.
Then Saturday, we went to see a friend, who had been unexpectedly diagnosed with lung cancer. Non-smoker, non-drinker, great shape, doesn't even swear, absolutely the last person you would expect to have cancer. From the diagnoses to the surgery was less than two weeks. He was recovering from the surgery, so we paid a hospital visit. The visit didn't feel exhausting, but it was painful going into the hospital and reliving our own memories of being the patient and patient's family. By the time we made it home, we were both drained.
Even now, it feels as if the slightest action, emotion, conflict has the power to suck all energy away from us and render us shells, which need new life force. This description may be melodramatic, but it fits my mood.
K's therapist warned us that visiting the hospital could have an effect on us. We were already exhausted prior to arriving, so we started our hospital visit with lunch. I hate hospital cafeterias. I refuse to eat at the one where K goes. I walked through and am repulsed by the options. I also find it disturbing that the longest lines are at the fried food counter. This one wasn't the worst, but I definitely have eaten at better cafeterias.
Ultimately, we did a lot this weekend around the house. But it feels as if we accomplished very little. We kept tab on how much we did just to know that we managed to do so much, but it felt as if we were unproductive. Irritating. If I want to feel non-productive, I won't do anything.
This week will also be disruptive. Work is busy for me. And we have electricians coming in to work on the house and "heavy up" the electric. I'm just hoping it means I can have the air conditioning running and be able to iron without having to go to the basement and flip the circuit breaker back on. Yes, I have limited goals. $2000 to not have to go to the basement, is it worth it? Actually, what's worth it is the possibility of getting central air once the house is heavied up.
After a Break
I've been gone for a while from here. Last week, I went to visit my mother and help her deal with accumulation of old stuff from the family house. When my parents divorced and the house was sold, everything was put into boxes with no attention paid as to whether it ought to be saved or not.
I realized that I am incapable of carrying on a conversation without talking about K at some point. The illnesses are this omnipresent feature in my life. I'm tempted to compare it to a black cloud, but that isn't accurate. More like a shadow following me. Maybe someday it will recede, but it hasn't yet. My family and friends have fortunately shown no impatience with my need to constantly talk about the past year and a half. I'm sick of talking about it, but . . . I can't help it.
A point of closure was reached in the past few days. Prior to K's heart attack, we had begun to redo the living room. I was stripping the woodwork of over a century of paint, which appeared to be permanently attached to the wood. Stripping sucks. The rest of the woodwork is going to be replaced by custom cut replica wood instead of being stripped. And K was painting. All work stopped when she had her heart attack.
The living room has been an eyesore for 18 months! 90% painted, woodwork bare to the elements, but we could not manage to find the energy to finish it. (And this isn't even the worst.) The dining room looks as if the paint cans exploded in it. We've put over 10 colors on the wall to pick one out and still have more to put up and haven't made any decision.
Regardless. . . the living room has been finished. I came in on Sunday and it was within minutes of completion. We gave up and hired a friend to finish the painting and it looks great! It is also an emotional closure to one of the undone tasks, left from the heart attack.
K continues to be stable. She's suffering from some sort of infection so on Tuesday, we went to the urgent care. Initially, doctors never quite know what to do with the two of us. K's memory remains spotty enough, so I have to remember her medical history for the past twelve months. He handled it well, but I think he was disconcerted that I provided the information. Unfortunately, he wasn't able to solve her problem, so she's off to the vampires to have blood drawn for analysis.
Today she's at the office, despite her fears regarding the increase in the terror alert. Those increases don't help. But she's learning to control her fear and not respond to the ups and downs.
