Holding my breath

I feel decent again today. I don't know if it's the meds or my attitude adjustment via patient, or eating better or even the stupid vitamins my psychologist told me to take. Whatever it is, two better days really have helped. The trick now is that I have to always be wary of good days. In a week I can begin to trust this. Until then, until I have gone a while without that feeling of absolute hopelessness I've been feeling for so long, I have to stay on edge. Even while feeling good I know that right now this may be too much. I'm feeling good but I'm also peeling wallpaper off and it's a really tough job I've put off tackling for a long time (two layers of that stuff for kids rooms that is really adherent with two layers of borders at the top. So that means up to 6 layers of chemicals and scraping, all the way down 2 walls, and then there is another border at the ceiling that I'm hoping comes off easier (ha). Working on this kind of thing often means I'm borderline manic.

Oh well, two days of feeling ok. That's a cautious celebration and really the thing I have been praying for.

Huh

Turns out I still have the ability to feel ok. Today was a much better day. I felt slightly less hopeless and more interested in life than I have in so long I don't remember. I realized there is something I need to do that probably has to come before the whole accepting that my illness did progress quite a bit over the last year and I need to live accordingly. Somehow as I'm coming to terms with that idea alone I'm feeling a little more peaceful, because I'm starting to realize that I truly can't handle things the way they are, and that I am not just quitting. Giving in to the illness has always seemed like giving up, so this is a big change in thinking for me.

The discussion I had with my patient yesterday also gave me a lot to think about. The last weeks have scared me because I have felt totally hopeless, something I'm not used to feeling. It has felt this episode was non-ending, that nothing would ever help again, and that nothing would be ok ever again. That discussion reminded me that there have been plenty of times I have thought about whether I wanted to live or die and I've always chosen to live. This time I didn't feel like I wanted to make that choice, I felt it was made for me, but that it was nothing but bleak nothingness ahead. Which is hardly what I want. Hearing my patient yesterday was an important lesson in yet another thing to consider before considering suicide. It made me realize that I want to live. I'm scared because I just don't see much that I can predict in my future, not even the normal things people rely on, but at the same time I have the things I need to let me fight a little longer until something works, and I can try again to trust that something will work.

Here's to joy tomorrow....

Someone who knows

I have this patient who from the day I met her has said I look and sound so much like an old friend of hers. She's talked a lot about how much my laugh sounds like this person. She has also talked about how my hair is so much like hers (the patient's) when she was young (my hair is wildly curly).

At some point she told me I reminded her of her daughter. She wasn't doing very well then, and I was confused because I was pretty sure she didn't have a daughter, and sure enough, no daughter is listed in her chart. When she said the same thing to another therapist the therapist reminded her she didn't have a daughter. The patient told her that she meant I was like the daughter she always wanted and never had. That alone melted my heart.

Tonight she told me the full story. She did have a daughter. A daughter who looked remarkably like me, sounded much like me, and even walked like me. A daughter who was mentally ill, spent time in the state hospital, and eventually killed herself when she was still young.

I've certainly never told this patient my story. I'll never admit my illness to her, especially now because I know it would hurt her. But she knows.

Count the flowers

I keep trying to get an honest and direct assessment: "This is exactly how bad you are". Sort of like on a scale of 1-10, where is my bipolar? Nobody is going to give me this, of course, and that's probably a good thing.

I have ascertained several things now. One, I'm not as sick as I was a year ago. Good to know, didn't think I was, but hard to be sure sometimes because I remember so little of the first few months. Two, I'm experiencing some of what I maybe "should" have when I was diagnosed. Back then I refused to accept how big some of the loss was. Now I get to do that. There are just things I refused to accept that I should have accepted. It hurt tonight to be told that sometimes people don't fully recover from the kind of episode I had last year. I know it, but I've avoided that kind of thought for so long. Three, I'm feeling sorry for myself. Not sure anyone expects differently right now, I think I'm still allowed for a bit longer, but some of this is my attitude.

So that's my new assignment: counting flowers. We're having a weird, weird year with ugly weather recurring over and over, yet the flowers keep popping through.

This better make me feel better.....

The heart of the topic(s)

I figured out what bothers me so much about the whole "i'll never date someone who is bipolar/schizophrenic" thing. It's generalization. Every single person who said that, and very often nearly anyone who says they won't ______ because someone is bipolar seems to have a commonality: they are basing it on their knowledge of ONE person with this disorder. Bipolar is rare, and obviously severe bipolar is more rare. Not everyone will ever meet someone with severe bipolar. Naturally some people with bipolar are not so great. Some people with no disorder at all are not so great. But bipolar sticks out and so people do this thing of assuming the one bipolar person they met is the only way it can be.

I did this too. One of the reasons I wasn't diagnosed for so long was my terror of the diagnosis. My father is bipolar as well and not treated and he is not a pleasant person. I refused to admit I was anything like him.

The thing is, in most ways I'm not. I am bipolar, and I have some of the same characteristics he did. He was a rapid cycler, although not as severe as me (probably because my treatments early on worsened this). He had mixed episodes. But he also had psychosis, and not just the rare auditory hallucination I've had. He was much more impulsive than I am. And most importantly, he lacked insight. Insight is my gift; I'm not supposed to be able to but I am able to understand and re-learn behaviors. My psychologist told me once that this is a weird trait of mine, that insight isn't supposed to be a particularly effective tool, but for me it works.

And that seques nicely into life's next issue for me....

I'm starting a very, very hard process. I have existed at a level of "I know my illness is very bad and that I am doing better than I should. I am grateful for that. I know what is bad, but I do not know how bad in specifics. I believe that knowledge is detrimental". I knew it was very unlikely I would continue to maintain at that level forever, and that eventually I'd have to admit that I needed to function more in line with the severity of my illness. That time has come. Unfortunately first I have to learn what the severity is and accept it because it is pretty clear I can no longer continue working the way I have been. This very painful and scary. I'm asking for patience as I go through a rough time while already functioning at a low enough level my psychologist's homework this time was to buy and eat something healthy.

Which I now need to make space for in the refrigerator.....

Am I wrong?

Another blog I read has me thinking a lot. Because I'm me and I live my life and probably because of my experiences with psychiatric patients I have a very strong, firm belief that some, not all, but some, severely mentally ill people can live extremely normal lives. I know that it is possible to respond to meds even after psychosis and live a fairly normal, medicated existence. I know from my own life, it's possible to have a lot wrong and still live normally.

I've been kind of stunned to learn from this blog (not one related to mental illness) that all the readers who have discussed this in the comments think that severe mental illness automatically means it is going to be very hard to have a good relationship with someone and they laugh at the idea of dating someone with mental illness.

But what makes a mentally ill person totally ineligible to be loved that way? Am I missing something? Because I know that for me there are certainly mentally ill people I would not mix myself up with, and I actually had to very forcefully eject a friend from my life because her mental illness caused me too many huge problems, but there are many, many people who are without any mental illness who I would stay far, far away from.

Right now I feel like I've just learned that there is no hope for yet another thing in life. And I find it so unfair. I asked and I wanted honest answers, but I didn't expect that NOBODY would agree that there is any chance I could be worth dating. Which makes me wonder how far that goes. Does that mean I'm not worth being friends with? Not worth talking to? Is it scary to share space with me? Where does this stop?

Current state of affairs

Manic. Mind going too fast to trust. Cranky. Practicing irritable remarks aimed at certain co-workers. Not sleeping. Really miss sleeping. Trying to adjust meds a bit. Work killing.

Threw up this morning. May or may not be lamictal. Ick.

Dear Just Me

Sarah asks:

Dr. You-I have a confession; I have been very bad about taking my meds lately. I am non-compliant and it sucks. I have realized that though and am going to get better about it.Do you think that having a reward system (took all my meds for a week so I can buy a new book) is an okay idea ... it would probably work for me, but I don't want to depend on a "reward" system for actually taking the medications I need to feel like me. Help?

Ugh. I doubt there is any bipolar patient out there who has not struggled with this. I certainly have. I probably struggle much less than most people, for several reasons, but it is very hard. The first reason I do better is that I've worked with psych patients enough to have seen how much meds help and I force myself to remember this. The second is that I cycle so rapidly that it is not unlikely for me to be suicidal several times per year. I know that the only way to avoid feeling like that is to take the medication. Even though I don't remember from time to time what that feels like, I remind myself as often as needed that I know it is a dark place. Third, and most pathetically, I'm so sensitive to meds that I deal with horrible side effects all the time anyway.

There have been two times in my 5 years of this illness that I've had the most trouble. The first was about 15 months into diagnosis, when my meds were still very out of whack and I was rebelling against the entire "lifetime"-ness of the whole thing. I was having side effects that were unpleasant (vomiting daily) and felt irritable and miserable all the time. Along with that I had just bought a house, moved, started a new job, and was watching a friendship I thought was going to last forever crumble over my illness. Instead of working with my doctor I rebelled, but I quickly learned she wasn't going to take me off meds because I refused to try. When I took them again very regularly and I was still sick she got me off quickly.

The other time was last year with all the lithium toxicity. I simply couldn't keep things down, and everyone reassured me it didn't count as med non-compliance because I was trying. However, after we determined I had been lithium toxic for months and had missed a crucial blood test, my psychologist began pushing me to be compliant with both meds and bloodwork. Having him stay on my case does motivate me, because he is not very forgiving even if I've only missed one dose.

On the other hand, things happen. Just tonight, for example, I got distracted and can't remember if I took 2000 mg of Depakote. Obviously I'm not doubling that dose so probably I'll have had a missed dose tonight. I'll know when I try to sleep.

As far as what helps, I like rewards. I'm not sure I've ever used this for myself for meds (although certainly for many other things), but I have with patients. I remember one lady in particular who I sent home with a pill box full of Hershey's kisses. Each time she took her pills she got a kiss. She was a bipolar very much like me but with more psychotic features when unmedicated and she was fine as long as those stabilizers went in. Oh, and pill boxes are a HUGE help. Not only do they keep things straight but you feel really guilty if there are pills where there shouldn't be. They also make these bubblepack things that you can fill for a month that I've wanted to try but I'm not in a stable enough place (ie my meds change more often than monthly still). I've used rewards with patients for lots of things with great success.

I'm not sure using a reward, especially in conjunction with something like a pill box, to help establish a routine is a bad thing. Perhaps you can set a length of time to use the program so you know going in that it is limited. However I will say that I have always treated myself to dinner out on psychologist nights and lunch or dinner out (often a nicer place) for psychiatrist visits. I (still) get anxious on those days, and a treat helps.

As a final thought, having been off meds last year because of my toxicity/ulcers/constant vomiting for 3 months, I can tell you it is so not worth it. Meds are a pain in the butt and side effects are worse. But as I learned the very hard way, it is even less fun to feel horrible and be forced to rapidly start your meds. It feels awful. I was a hideous mess. I fought hospitalization but I now understand why that was so nearly involuntarily imposed upon me. At one point I was having to keep track of meds and meals with checklists because I literally couldn't be trusted to eat or take meds accurately.

Hmmm, liking this advice thing....I get to sound all smart.....Maybe a weekly feature where I'll make things up or something.....Just Me talks to Just Me.

Don't be bipolar in California

I found a really neat new (to me) site which discusses legal issues related to severe mental illnesses (bipolar and schizophrenia). I am reading it slowly, but already it has triggered a lot of thought about this.

I believe that there is a level on which patients have a right to choose treatment. I know very well how harsh the treatments can be, and how frustrating it is to not have them work as well as hoped yet still have all the side effects. I know that there have been times I have not been very compliant with certain parts of my treatments because I didn't like something about them.

I can't really imagine being bipolar and having well times, but I imagine if I did I'd push rather hard to be allowed to try significant med reductions/trials of being off meds. I did this when I only had a depression diagnosis, and although it wasn't what my doctor wanted it worked for me and made me feel I had tried everything when I did need the meds again.

In the situation I'm in I do have certain meds I have requested not to take. One of these, Zyprexa, is likely to help me, but I really do not want the side effects. Another of my online finds lately has been this which I plan to fill out and distribute to my mother and doctor's as soon as I'm well enough to trust my own decision making.

Which is the point. I know that at times I can't make any decisions for myself that are healthy. If I am unwell I want those meds forced on me no matter what. I already actually wish that my meds were available as depot injections (shots that give a month's worth of meds). I'd rather gets shots than worry about missing doses, etc.

I've seen many times what non-compliance with meds does. Anyone who has worked in psych has. Many, many of the admissions have not been taking meds properly for a very long period of time. As they are given meds on a consistent schedule and monitored while they take them and all stops are pulled to get those meds in consistently, the patient sometimes becomes a totally different being, capable of so much more than would have been anticipated upon arrival.

So, I now will make sure that everyone understands that I give up my right to refuse meds when I am too ill to live outside of a psychiatric facility. I never thought that wasn't obvious.

Reality

It's been a while......Still just not feeling so good. The good news is that I have finished one week of the Lamictal starter. In about 4 weeks I'll be at a better dose.

I'm continuing with the odd combination of anxious and exhausted. Today I was so tired I slept through my alarms. I didn't go to work until nearly 2. I'm having trouble eating because nothing really appeals, and what does appeal tends to be junk. I'm eating the junk, knowing something is better than nothing at this stage, but it bothers me because it's another deviation from my normal.

The reality is that my life just isn't so together right now. My kitchen floor is disgustingly dirty. Trash needs gathered and thrown out. I need to take garbage out on trash day. The bathroom needs scrubbed. I have so much dirty laundry I'm not positive I have clean scrub pants for tomorrow. I don't really care; if I don't find any I'll put some that don't really fit out. Yeah, I care a lot..... I'm out of the kind of soap I like and will have to use perfumed soap, which I avoid because it can bother patients. I have new pillows that I haven't used because it's too much effort to put the covers on and change my sheets.

I'm just tired. I'm trying so hard to learn that I can't aim for "normal" because I'm not going to get there. I think that now I'm ready for a new step and am going to start asking the people who treat me to give me a more realistic picture of my illness than I've wanted before.

It's not all bad, even though I sound like that. I have happy moments every day and there have been times in my life I did not. I am sleeping and that is better than insomnia. My patients make me smile and laugh. But mostly this just isn't what I expected.