unprepared

I have learned to deal with my mental health issues. Even though it seems overwhelming sometimes, I know I will survive as long as I take my meds and sleep. Dealing with the depression during waking hours means that I focus on myself, selfishly at times, but always with the goal of keeping myself sane for my family.

I don’t know how to deal with Nicole’s worsening illness. It is difficult to have the right amount of empathy when I don’t fully understand what she is going through. It is hard to deal with her total lack of motivation to fight her illness rather than just giving in. I understand the thoughts of fantasy, because I was in a “functional fantasy land” on a few occasions, but I was never fully consumed by it.

I don’t know how to be a caregiver. I’m not trained for this. I’m too self-oriented, and not good at giving comfort to others. Her illness is more difficult for me than my own, and I don’t know what to do about that.

the latest challenge

Another meeting with Nicole’s doctor, and another new twist. It turns out that the new diagnosis is schizoaffective disorder – all the fun of recurring depression with some symptoms of schizophrenia mixed in, and possible comorbid conditions such as anxiety disorder. I am now trying to learn as much as I can about this new label, and what it means for Nicole.

I won’t list the symptoms here, as they can be found on several websites. The consensus is that medication probably should include antipsychotics like Invega or Risperdal, however the doctor has not prescribed either of those. Mood stabilizers and anti-depressants can be mixed in as appropriate. Right now she is taking the mood stabilizer Lamictal; an antidepressant, Zoloft; and an atypical antipsychotic, Abilify. Apparently it is possible for anti-depressants to increase the risk of psychosis in some people. I would like to find out what the doctor plans on changing, if anything, and why.

All the websites say that long-term treatment will be required, and should include talk therapy, group therapy, and possibly work training. Thanks to another blogger’s comment (sorry, I’ve forgotten who), I’ve come to realize that for the near future Nicole will need regular input from a support system that includes professional help. Obviously we will help her as much as we can, or as much as she allows us, but I think she sometimes sees us as only nagging harpies who don’t really care about what is in her head. I want her to believe that is not true.

The Mayo Clinic website says “Untreated, people with schizoaffective disorder may lead lonely lives and have trouble holding down a job or attending school. Or, they may rely heavily on family” to survive. WebMD says that schizoaffective disorder is “a lifelong illness that can impact all areas of daily living, including work or school, social contacts, and relationships.” The Wikipedia article stated that statistically, “social problems such as long-term unemployment, poverty and homelessness are common”, and “The average life expectancy … is shorter … due to increased physical health problems from an absence of health promoting behaviors including a sedentary lifestyle, and a higher suicide rate.”

In other words, this is serious shit. I have stated before how worried I was for Nicole’s future, and reading about this illness is not giving me any encouragement. But I think she has a good doctor, and she has time to grow and mature to deal with her illness, even though it may be at a slower pace than I would hope for.

fear wins again

This, from a comment on the recent post “around the world”:

The problem I have with support groups is that I’m afraid to go in the first place. My social anxiety wins almost every time. Even with a group of people who could understand me better than anyone else on the planet, I am still afraid of their judgment. I have the irrational fear of being hurt by these strangers who probably would like to be helpful and compassionate … I’m not going to get any benefit from the group when I can’t take down my defensive walls or when I am so anxious I can’t think straight. One time I went to a group, loitered in the doorway of an adjoining room, then left before anyone noticed me. How lame is that? FML.

This time I only made it to the parking lot.

I had planned on going to the group meeting two weeks ago, but that time I made excuses and just went home. This time I was ready, I had psyched myself up for doing something which might benefit me, and I had no reason not to go … until I started thinking about it.

I wrote down things I might say to the question “why are you here?” (I sometimes rehearse my social interactions by writing them out beforehand … sad, I know). Then I started thinking that some of the potential responses sounded corny or rehearsed (which they were). Then I realized I would be stammering and shaking the entire time. How would I not sound like an idiot trying to answer simple questions? I could imagine the other people staring at me, wondering how bad my problems were, and feeling like I was the center of attention. If I felt that badly I wouldn’t get any benefit anyway, so why should I go?

By this time in the thought process my pulse was racing, I could feel my blood pressure rising, and a building pressure inside me … not a panic attack, but headed in that direction. I sat in the parking lot debating whether to go inside, but the starting time came and went, and I definitely would not go into a room of strangers late and have them all watching me. The decision was easy at this point, and I drove away.

When I got home, the reception was hardly one of empathy or understanding. Mrs. Fish was curious until I told her I didn’t go, then she just gave me an “I’m not surprised” look. Later Nicole asked me how I liked it, then she said “what do you mean, you didn’t go?” I said “are you shaming me?”, and she said no, but then let it go.

Thanks for the encouragement. I feel like I have let them down somehow, trying to do something positive but not trying at all, and failing again. I’m angry with myself for being this way, and for bailing out before trying, but I’m also sad and emotionally drained.

I won’t try this again. For now, it’s back to survival mode. Forget about healing at all, just make it through another day.

dream stew

I had a disturbing dream several nights ago that I am still trying to understand.

I was on my way for blood tests, and Anne’s mom took me there. She went in with me and sat in the waiting room. I told her to wait a minute, I would be right back. I went to the car and drove away, but the driving soon became flying in the sky, circles, loops, floating and diving. I returned after what felt like an hour or less. She was waiting on the same bench, but now it was dark and everyone had gone home. She said I had been missing for over a year.

The dream shifts to a room with a sofa, where Anne’s sister sat nursing a newborn baby I didn’t know about. When they get ready to take me home, they tell me that Anne also has a new baby, a child that I have no memory of. I felt this crushing feeling of despair as they talked to me, realizing that I had missed so much during this episode, and that I remembered nothing except the flying.

Is this what a psychotic episode feels like when it ends and you return to reality, or is it much darker and frightening? Maybe this is about my worry over Nicole’s condition. Maybe this is about the feelings of loss regarding all the time with my family I can’t remember due to dealing with my bipolar and the associated memory loss.

Or was it just a dream, just a stirring of the subconscious soup? I never can tell.

the mask

What are you hiding? What does your mask conceal? I have several masks I wear, each one hiding something different depending on the circumstances.

At work, I try to hide everything about my life away from work. Sometimes I avoid the inevitable questions, sometimes I lie, but usually I say as little as possible when someone asks how my weekend was, or if I had a nice holiday. I don’t want to talk about my life because I don’t think they are interested in how depressing my life really is. People like to talk about things they are proud of, but I try to hide the fact I don’t have anything to be proud of.

Sometimes I want to hide my social anxiety, but I’m pretty sure I fail miserably. With nameless strangers I can sometimes hide the fact I am panicking on the inside, but normally I just avoid those situations. It is harder when I am forced into a situation I can’t avoid, and I have to pretend I am okay. It takes so much effort to pretend, but I feel like I can’t let myself crack under the pressure.

I feel the most fraudulent and vulnerable when I put on my professional mask. At work sometimes I feel I have to project a persona that is not me at all, someone that is friendly and outgoing and intelligent. This is the most difficult for me, because in these moments I feel none of these things. I am afraid of being exposed as a phony, which would lead to potentially disastrous consequences at work. I am more afraid of being embarrassed or ashamed in front of others.

At home, sometimes I feel like I need wear a mask to hide my mental state at the moment, because my family either can’t deal with my problems or I don’t feel like they would understand. Mrs. Fish already is strained by worrying about money and her frustration with Nicole’s illness, and her response is to get mad and work longer hours. I don’t want to be the cause of that, so I put on a stoic face and pretend everything is okay.

Sometimes I need to hide my thoughts from Nicole, and this is difficult because she is good at reading me sometimes. She knows how to ask questions that make me uncomfortable and put me on guard. I feel like I have to block her out to keep my psyche safe from being hurt. I realize this may not be true, and is probably the result of a lifetime of low self-esteem and undeveloped social skills.

The most ironic is when I feel like I have to wear a mask for my few friends. I don’t want to be the person who brings them down, so I can’t let them know how I am really feeling, even though they are the most likely people to understand. But if our entire friendship is based on a fake persona, is that even a genuine friendship? I am afraid they won’t want to be friends with the real me, so I keep a mask on. Sometimes I let it slip just a little for certain people, but I never let them see very far inside.

The reason I put so much of my life on this blog is because I don’t have anywhere else to share it all. I try to be real here, and it is as unfiltered and unmasked as I can allow. If you become my friend after reading my words, I guess I really can feel safe with you, because you have seen me at my worst and not abandoned me. If you decide to hurt me at some point, it will be devastating.

what’s in a word?

Psychosis is such a frightening word, especially when it is your child who is stuck with that label. I think I could handle it better if it were my own problem.

Nicole’s psychiatrist thinks she has had one or more psychotic episodes, where her thought processes were completely out of touch with reality. She also talked about depersonalization, where you are obsessed with the feeling that nothing is real: not you, not your family, not your surroundings. That seems like a dangerous combination, where it would feel okay to hurt yourself because it isn’t real.

I think the combination of these factors make Nicole’s bipolar much more serious than I realized. I’m trying to say all the right things at home, and not let on how afraid I am for her future.

grouper, flounder

I thought I might be ready to go to a support group session tonight, but I bailed. I tell myself I had a good excuse, because I forgot my wallet at home and didn’t want to go anywhere before returning home. Then I would have had to drive all the way across town again, and I didn’t feel like it. So instead I will blog and eat ice cream.

Nicole has been telling us how her group sessions have been helpful for her, and that everybody (including Mrs. Fish and I) would benefit. She also said that in her DBT group sessions there was a sense of shared accomplishment when they had collectively made a realization about themselves. She says there is something real about opening up in front of strangers, and sharing their experiences.

I told her I hate the one person in every group that hogs the entire time and makes the whole evening about them. She said if that person needs that time, it is okay. I’m thinking the opposite, and maybe that’s why I don’t go to group sessions.

I think Nicole is a social person, most of the time. When her anxiety is low, I think she benefits from being with other people. That is a barometer that lets us know if she is more depressed, because in those times she has no interest in socializing. Compare that with me, who rarely has an interest in socializing with anybody, and that’s when I feel good.

But like I said before, maybe that is not the best for me. I am realizing that I may need other people to help me make progress and help me not be so scared of social situations. If I find the right group of people, maybe I can learn something and maybe make a friend or two.

But not tonight. I had a good excuse. I’ll try again in two weeks.

around the world

It’s apparently World Bipolar Day, meant to spread awareness and understanding, yada yada.

Millions of desperate, struggling people around the world, nearly 6 million in this country … and yet I feel so alone.

Bloggers make me feel less alone, and that I’m not the only person dealing with this shit. But none interact or live with me every day.

I have another bipolar sufferer living with me, Nicole, but lately we deal with bipolar seperately, not together.

Maybe I need a support group, but it is so difficult to battle my social anxiety to join a group. I wish I could get to know other people individually as friends and share our bipolar experiences over coffee and scones.

Maybe I want friends now. I have one friend in real life who I can share with, but she lives far away, and we can’t talk face-to-face.

I wish I had better support at home. Instead, I struggle with bipolar by myself.

Millions of people, and I feel so alone.

her release and my conflict

Nicole is back home from the hospital. They only kept her about 36 hours, just long enough to be sure she was stabilized. They re-diagnosed her as bipolar n.o.s. as opposed to simply depression. She visits her p-doc tomorrow, and will probably go back into the partial-day program that she did last year.

Of course I am concerned about her well-being, just as much today as 2 days ago, or last week. But I am conflicted about how I should feel about this happening again. I believe this episode could have been avoided. If she had listened to our advice about medication and wellness, she may not have become suicidally depressed. Instead she was mad at us, refused to take her meds, and went on a downward spiral.

I’m sure any parents or caregivers can understand my frustration. All kids think their parents are idiots sometimes, and maybe it seems like we are just nagging her. But when the same exact advice comes from someone with an advanced degree, somehow she decides she will listen to them. Am I being unreasonable to be just a little bit angry about this? At the same time, I don’t want to transmit that to Nicole, and I don’t want her to feel guilty. However, I would like her to feel responsible for her situation. I don’t think she has the maturity to make that connection right now, but hopefully she can soon.

I want her to be well, and I will spend whatever it takes to keep her safe from harming herself. But the cost will hurt us quite a bit. Anne already stresses too much about money, and we may have to cancel some plans we have made. We borrowed some money recently for carpet and a bed and a few other things that were necessities, but of course as soon as you spend it, you wish you hadn’t. It always seems like something bad happens right when you don’t have money to pay for it.

I don’t want to focus on that right now, I just want to help Nicole be as healthy as possible. I hope we can avoid a repeat in the future. I hope she is able grow and to take some ownership for her own health.