Blips are bad
Things were going so well. And then today K wasn't able to get out of bed. She claimed she hadn't slept all night, but I was, unfortunately, up till 1 am and she was asleep from 9:30 pm to 1 am. However, she said she was up every hour after 1. I believe her, but it's baffling. I guess I should be more understanding as she does have a bladder infection. She only got the prescription yesterday to help cure it.
I knew there was something wrong when the alarm went off at 6 am (no, I didn't make it to the gym to lift weights this morning.) K didn't move when the alarm went off. Never a good sign. Morning isn't a great time, but on the good days, she usually pulls herself out of bed. I didn't say anything, just got up to take my shower.
After showering and returning to the bedroom, she hadn't moved other than to pull the covers over her eyes to keep the closet light out of them. I got her to remove the earplugs, she sleeps with nightly. Our street used to be really loud all the time, now it is somewhat loud on rare occasions, but she doesn't believe in risking wakefulness. Once the earplugs were out, we were able to have a conversation and talk about what was bothering her.
It was evident that she wasn't doing well. I believe the reason is twofold. 1) She was supposed to speak at a conference this afternoon. Despite being an excellent speaker and her portion only being 5 minutes, I think it upset her.
2) I'm leaving town tomorrow evening till Sunday to visit my mother. K worried when I leave that something might happen to me and she's frightened. I went cross-country for 5 days in February. She worried endlessly before I left, but once I was gone, she enjoyed the time alone.
It's frustrating trying to reassure her. She immediately jumps to the conclusion that she's sick. Not that she may be having a bad hour, bad half-day, or bad day. No, she immediately believes that she is ill once again. I tried to calm her and finally settled on providing her with a half tablet of xanax.
I try to be patient. And I was, but I did have to leave and left with her still upset. But this has happened over and over the past year. My remaining at home wouldn't have changed the outcome. So I did want I needed to do, which was go to the office so I would arrive on schedule. It wasn't how I would have liked to have started the day.
K did managed to get up later in the morning. She is functioning by watching a movie to zone out of real life. I hope that tomorrow is better and that today is only another blip on the screen.
Irritations
The weekend felt irritating for some reason. I spent most of Saturday in a foul mood and K wasn't able to pull me out of it, nor was I able to fully understand why I was in such a nasty mood in the first place. Sunday improved, but still wasn't great. Then today, I worked out, but then felt ill prior to leaving for the office. So I dropped K off and went back home to bed. The only good part is that I felt better upon waking up and the cleaning lesbians (actually the lesbian team, who run a cleaning business) started on the house today.
Yippeee! It means minimal cleaning for us, which is good. It isn't that we can't clean, but rather that we don't clean. K's therapist told us that more relationships have been saved by hiring cleaning services than anything else. It wasn't dividing us, but it was sucking up time that we preferred to use otherwise. Basically, I have little interest in cleaning and too high a tolerance for dirt.
The switch of this weekend was that K was worried about me for the entire weekend instead of the other way around. And she didn't feel physically all too well with a cold and bladder infection. She did get up and go to the office this morning.
If being in a blah mood for a day or two can send my world spinning, I can't imagine what would happen if I suffered from mental illness. (I'm usually disgustingly happy with life and happily bounce along.) My respect for K increases immensely when I feel icky and I want to let it overwhelm me. This is nothing compared to her fight, and I can't even handle a day of it.
The other part about feeling bad is that I get to be the one getting cared for instead of doing the caring. I hate writing it and it makes me somewhat dislike myself, but I get tired of caring for K. I want to not have these responsibilities at times. Truly, I don't believe that I get sick to abdicate, but it is a relief.
The other thing, which may have kicked in today to help me feel better, is that I made it to the gym this morning. On weekdays, I drag myself out of bed after anywhere from 2 minutes to 10 minutes of internal arguments (and that's on the days I make it) and head to the gym at 5 am.
During the worst times last year, I worked out 3-5 times a week. It made survival possible for me and brought my stress down to manageable levels. I've been less good recently, only working about 2-3 times a week. The end result is identical in that I am flooded with stress relieving, happy hormones. I'm trying to up my frequency of workouts, since I know it is one of the best things I can do. But I hate the 5 am thing, it's just that there isn't any other time.
K continues to do well.
Blips
Even when things appear to be going well, blips occur. Twice this week, K hasn't made it to the office. Tuesday, she didn't sleep and took xanax, which kicked in at 6 am when she normally rises. Then today, she got up and got ready for work and at the last minute said she couldn't do it.
Neither occurrence was necessarily related to bipolar disorder. She was only exhausted, so both days she slept and then worked from home for the afternoon. An improvement over where she was a month ago, but still not 100%.
The constant challenge, one of many as living with a person with bipolar disorder there are constant challenges, is limiting our activities or at least K's activities to prevent exhaustion. This past weekend and during the week, we obviously weren't successful. But it is also hard to limit.
Last night, after work, we went to the hair stylist. We had dinner before going in, so neither of us would get too hungry. Then we were there about an hour and 15 minutes or a bit more. But for two cuts and one color that isn't bad. However, not getting home until 7:30 pm killed off K. We were both tired and grouchy by 8 pm. The dog was none too thrilled either as we didn't want to give her too much attention.
Cutting back our activities can mean that we never manage to get anything done. Tonight, we have a dinner party that was planned two weeks ago. Do we cancel or risk getting too tired again? We're going to risk it, but I get pissed about the continual limitations.
I probably push K too much to do things with me. I enjoy spending time with her, so I want her to be able to go shopping, walking, or to coffee with me. Having a partner, I want to spend time with her. Thus, I pressure her a bit and gently push her to come with me, even when I try to promise myself I won't push this time.
But going too far can send us both into crying fits and irritation with one another. I've been exhausted all week and suffering from stomach problems, again. K suggested going to the doctor, but my internist won't see me for my stomach, because he wants me to got to a GI specialist. K forgot that I had serious problems last summer and again in the winter. (ECT rears its ugly head.) I'm hoping it's only stress and will quickly go away.
Internet Snob
I realized yesterday that I am an Internet snob. I was searching google for more information as to bipolar disorder and found quite a bit of information. I found information using "bipolar webrings" and other like search terms. However, the sites that I found on those searches were not so good.
Some of them had useful information, and I'll probably link to them. But the majority just were poorly designed websites with ramblings on them. I'm not sure if I was more irritated by the design or the contact. If I were truthful, the design aspect might win out.
Before reading the material, I had contemplated submitting this blog for possible addition to a webring or other bipolar information. That said, many of them had not been updated for years and were floating in cyberspace. So including my blog wouldn't really have worked.
The one piece of information that I found to be missing was specific information for caretakers. Some people addressed it somewhere on their websites, but there was nothing that worked through the difficulties of caring for someone with a mental illness on a daily basis. It's unfortunate, because there are millions of caretakers out there and they need assistance as well.
My relationship with K isn't built on the foundation that she is the patient and I am the caretaker. I believe it would be a much more challenging role to care for a child or adolescent with bipolar disorder. Our relationship is built on love, trust, and respect and those are the qualities, which have held us together thus far.
Nor does K require constant caring. She has an excellent job and is an equal financial partner. We are fortunate that we don't have financial worries. She more than maintains the house. At times, she needs me to handle the driving, because she may be on a medication precluding her from going behind the wheel. For the most part, even when she's at 80 percent, my role as a caretaker is limited.
But, when I have to care for her, it does place a burden on me. And that is when I could use resources to help me get through the moment or the day. It is challenging and stressful to determine what the appropriate next steps are to keep her from wanting to harm herself or harming herself. What are my limits as a caretaker? When am I pushing too hard or taking on tasks that she needs to undertake?
These are the types of questions and responses I would like to see and have not yet managed to find.
Fear
Many things about the past 18 months have surprised me. Previous to K's heart attack, I had never dealt with anyone being ill. No one in my immediate family was ever ill for more than a day or two. My grandparents had either passed away or were a long way away, so I was never confronted with illness. And my parents' friends never had any health problems that I knew about. My parents are both in excellent health. Chronic illness and doctors did not factor into my worldview. Thus, not only was I shocked to have a partner with a heart problem, I also had to learn how to function as a caretaker never having seen it done.
One lingering effect of 2003, when most of the crisis occurred, is my fearfulness. Not only was the heart attack almost fatal, K had a number of other health problems throughout the year. These additional problems had us averaging a visit a month to the emergency room and four hospitalizations. Every time, I learned a bit more. One tidbit of knowledge is that cell phones frequently don't work within the hospital and getting in and out is difficult. Now, I always have a prepaid phone card in my wallet, so I can make calls directly from the room. (The exciting part is that we have had
ZERO visits to the ER in 2004, only one angiogram, which was scheduled.)
Despite K's improvement, I know that I am still working through the fear and pain of 2003. Movies featuring death, music, and books all have the power to evoke tears and pain. There are times when I remain frightened wondering "What's next?" Those times don't last long, but they remind me of the psychological bruises that I have.
A positive sign is that I have the time to reflect on these emotions. During the crises, I shove everything to the side and focus on the day, the hour, or the minute, depending on which is the most manageable. However, the thing I continue to question is how long before I no longer burst into tears? How long before I can trust that we are able to live our lives normally without crisis? How long before I can purchase plane tickets and be certain we will be able to use them?
Slowly, I'm gaining confidence, but I'm impatient and I'm tired of being frightened. I don't know that answer. All I can say is that it is better than it was a few months ago, but not good enough.
Good Days
Another visit to the psychiatrist today. It was a relief in that K has been doing so well since last week. Usually, it seems as if several days prior to her visit, she begins to get worse, so the focus is always on trying to correct whatever has gone wrong. But not today, she has had a great week, the first one in a while.
For some time, I've been saying she's at 80%. The last few weeks it has hovered more at the 60-70%. And the last week, she's been definitely at 80% or higher and the last 20% has seemed within reach. Pareto's Law states that basically that achieving the last 20% is requires 80% of the effort, and I've come to believe that in this case.
But, it's the little things that show me the improvements. We cleaned the house and hired a cleaning service. (Our spot cleaning saved us the expense of them doing a baseline cleaning, which is several hundred dollars.) We spoke with a landscaper to repair a broken brick flower bed, which some asshole ran over with his truck. We managed to go to the movies and have dinner and drinks with friends. (Well, I drank; K doesn't due to the meds.) We dropped the rugs off to be repaired and cleaned. Although, these things are part of everyday life, they represent a life we haven't lived in a long time.
Our ability to make the phone calls, set up appointments, and follow through on the little things tell me that we are making progress. Who knew that I would be so excited to have the energy to dust mop the floors. Trust me, K never thought I would be excited to dust mop.
Nothing but good times ahead. . .
Well, I hope that's the case, but the realistic side of me says that I should take what I can get. Things have improved again, which has brought about another bout of exhaustion for me. I'm able to push through the crisis, but afterwards I need time to recover. Last night I got a good nine hours of sleep and would be perfectly happy going back for some more.
I can see K's progression with the illness. This morning she woke up and lay in bed. But instead of getting wired about her early awakening, she got up and read downstairs, as not to disturb me. Basically, she was able to make decisions, which prevented her from getting wired and upset. So, even though it wasn't the greatest morning, she made it to the office and is feeling much better throughout the day today.
When improvements occur, I quickly forget about all of the bad days that we've had. I forget about my frustration barely held in check (at the really bad moments, not held in check), the bouts of tears, fear, and helplessness. Instead, I am able to focus on our relationship and the big smiles we each have on our faces when I see K headed towards the car after getting out to run an errand. I can think about the fact she calls my shoes platy-paws (not a mispelling) because I wear size 11. (In my defense, size 11 is a reasonable size for being 6'1".) I can remember the times when we laugh and tease one another about the smallest thing. Reading this, I guess I live for the good days.
Becoming. . . .
Occasionally, I wonder what will become of me/us when things settle. Life has been so chaotic there hasn't been time to think or do much else than react as events occur. Not the way either of us choose to live. I don't seem to be able to make much progress in my thoughts, and lately I've noticed a restlessness in myself.
Events that K and I have gone through over the past 18 months would have destroyed a number of couples. We've survived. But. . . what comes next?
I've tried to track back what I did before the 24/7 crisis pattern was established, grad school, moving to DC, etc. No pattern emerged. Now finding new interests, activities seems daunting. Continually I remind myself that I/we are still healing, but I'm tired of that as well. It's been 18 fucking months, can't it just be better without the healing?!!!
The good news is that the weekend was good and K's in the office this morning. Dr. M, the therapist, felt that K made a few breakthroughs last week and that things should start becoming easier. Anything to break the perpetual cycle of improvement and decline that have marked the past months.
Still, I try to recall 12 months ago. Last summer was good, but the world became a living hell for each of us starting last fall. Now the progress appears to be more solid and grounded. I'm hoping that it isn't fool's gold.
My memory for much of last fall and early winter is gone. A self-protection mechanism resulting from the stress. I remember enough to know it was hell.
My thoughts are disjointed in this entry, sorry.
Distractions
Rather than actually writing anything for this blog, I've been busy trying to figure out how to make it look better and add the links to the right hand side of the page. I've been moderately successful.
The week continues to be challenging. Even during the worst pain, K doesn't lash out at me too much, but occassionally something will slip through. Living with the uncertainity of mood swings takes its toll. Last night, as she was struggling against herself, a simple question made her snappish. I hate the unexpectedness of it all. It makes it impossible to plan or promise that we will do something.
Last week, we had puchased tickets to fly out to Chicago for a couple days. About five days prior to the trip, I said that I felt it would be too great a risk. Once again, the disease forced us to put off doing something we really wanted to do. Where to draw the line between living and continuing to put off life?
Elephants, dementors, oh my
The quote below is from the blog,
mamamusings. Despite the topic of alcoholism, the analogy of the disease being a dementor is accurate.
Bipolar disorder has the ability to suck everything out of the patient and the caretaker, if you aren't careful. There are days, when I don't know how to be careful. Protecting myself in many ways is the last thing that I want to do, because it involves distancing myself from K. But I have done it and will continue to do it, when necessary. Though, I have learned that distancing myself isn't permanent. I can move closer again, once the danger has passed and K is back to being herself.
stop dancing around the elephant
I went to an Al-Anon meeting tonight where one of the participants said something that really stuck with me. When you live with an alcoholic, he said, the disease is like the proverbial elephant in the middle of the room. At first, you dance around the elephant, pretending it's not there. When you finally acknowledge the elephant's presence, however, it doesn't disappear. It's still sitting there, as big as ever. And you're still dancing around it, still trying to avoid getting trampled.
Letting go of denial and acknowledging that the elephant is there is only the first step. After that comes detachment of figuring out how to stop caring so much about the elephant. For those of us who live with the elephant, many of our problems come from the unending and inevitably unsuccessful attempts to make it go away. What Al-Anon is teaching me to do is to take the focus off the elephant, and put it on myself and my own needs. When I stop focusing on the elephant, it gets smaller. It will never go away and that's important to accept, as well. But the more I focus on it, the more dominating and damaging it becomes.
As I thought about that on the way home, I was reminded of Harry Potter and the Prisoner of Azkaban, which I took the boys to see earlier today. I started thinking about the elephant as a boggart but that's not really it. Making it ridiculous isn't the solution.
In many ways, the elephant is more like a dementor, ready to suck the life out of you if you can't draw on your own inner strength and summon a shield and a patronus. For me, right now, Al-Anon is teaching me how to summon my patronus, and protect myself from the elephant in the living room. Eventually, I'm hoping that it will shrink into a corner, no longer the center of all of our attention.
The weekend wasn't necessarily rough, but today wasn't so great making it more difficult to shift my attention from the disease to other things.
Frustration
Today is one of those days where my caretaking skills are stretched. K has had a rough week and only made it to the office two days. I have today off and suggested that she might want to go in. It would give her a chance to feel better about herself, thus be able to enjoy the weekend more.
When we woke up, I asked what she was going to do today and all I received were non-committal answers. I pointed out that I was trying to plan my day. For example, if I was going to drop her at the office, I would go have breakfast and coffee at Tryst. Otherwise, I would eat at home. After prodding a couple times, and receiving the same answer, I finally got up saying that I would go eat downstairs. And I proceeded to get more and more irritated as she didn't rise for another hour. I guess that answers the question as to whether she's working today.
I'm always of two minds. One is that I shouldn't push. Today, though it would be nice for me to have the house to myself, something which rarely occurs (and is a sore point with me.) She stays home during the week or works from home and has time to herself, which I rarely have, except on my commute.
We've actively worked towards figuring out this problem. And we have made progress. But every so often, feelings of being hemmed in hit me again and stress me out.
Except, this seems a petty issue. I can't tell if I'm being reasonable or not, but I feel my reserves being lower today than usual.
