Whenever the rainbow appears in the clouds, I will see it and remember the everlasting covenant between God and all living creatures of every kind on the earth." Genesis 9:13

Saturday, July 14, 2007

Here I am

I'm back. Still have tough stuff on my plate, but I have at least gathered the information I need so that I feel like my thinking is ok and I can go forward with handling it.

My problem is that I reached a weird point with my therapist. I discussed that a bit a few weeks ago. Last week we talked about it a lot more, and he brought up things indicating that he thinks I may not be progressing much, that he questions the benefit, etc. I talked to him about how it seems he always thinks I'm being negative when that's not how I'm necessarily really thinking, or how I am even when that's how I'm acting.

Then we had a discussion that was difficult for me because I was telling him I thought he wasn't understanding some of what I was going through. That went immediately into well of course he couldn't but he did respect my situation, etc. However, that's not what I meant.

I've lived with bipolar quite some time and so I am well past grieving its presence in my life. I have known from day one that my situation was complex and that I would not have good stability; adequate was the goal. In time I learned that adequate stability meant a lot of stretching on my part, but it was liveable and I was finding good things in life again. Until I got so very, very sick in January 2006. I consider that the bad period really began more like late October of 2005, but it was more typical of my cycling then; bad and annoying but causing the constant threat of disability.

Over the last 11 months since I returned to work I have had to face so many new realities. It was almost like being diagnosed again as I struggled to learn to live with the new limitations. Oh, let's be honest, to even admit I had limitations was a struggle that was about 6 months of therapy. And now I'm having to admit that I will need to leave this job path that I love so much soon.

I never did exactly well, even for a bipolar patient and I was always considered quite unstable. My first few years were the ones with most of my horrible med reactions, so that did not help. But those first years I did have two or three month sequences where I would be ok or better. I went for periods of time without med adjustments. I was ok between monthly visits with the psychiatrist most of the time.

Everything changed when the bad episode started. Since then I have had only 2 (today being one of them) psychiatrist visits when meds weren't changed. Even though we usually follow a one at a time process thanks to my reactions there have been a number of times I've needed multiple changes at once. Besides that there has been frequent email contact with my psychiatrist. I've had 2 problems severe enough to require my family doctor call the psychiatrist. I'm very, very unstable all the time. I no longer get to ignore my disability, ever. And the impact on my life went from being pretty bad to being horrible.

On top of that I realized I've burned through so many medication options. I've retried anything that I thought I had been wimpy about taking, but most of the reactions I've stopped for were dangerous. I have known for quite a while that I was probably going to face a point when the meds weren't there like I would need. I never thought it would be so soon.

One of my personality traits is a desire to be prepared for things. I do much better with emotionally difficult situations if everything is explained in advance. I need to cope with the fear and anger and whatever before I'm also coping with emotions. This makes sense when you consider my already out of control emotions; it reduces the response later.

So in the last months I have been through a process of grieving and being angry about my illness progressing. I've had to accept that my days of pretending for one minute that this isn't going on seem to be pretty well over. Further I've had to accept that the losses are going to continue. And I've had to accept that it is very likely I'm going to face some ugly treatment decisions soon, decisions I never wanted to make. Decisions that make starting lithium look easy, and I thought that was pretty monumental.

My therapist came into my life when I was already very ill last year. He's never seen me at the level of functioning I still want to think of as "typical" for me, even though I'm beginning to know I need to live in the now and define typical as the way I'm living. I don't think he understands how hard the adjustment in thinking has been, partly because he has no way of seeing how much I have changed. I don't particularly like myself now either, but I just woke up from a long time of being too ill to care. I'm working on it, but I don't know who I am in the strange new land. I don't know if anyone but me could see a difference, but I think it is there from my early posts to the ones 4 months later and beyond. My therapist sees only the person he has known during this time I have not been well and to him that is the real me, when to me the real me is now unknown. I'm trying hard to quit thinking of myself as the way I was, but it's hard to not remember.

I think I left my therapist out of my coping with these things. I talked about it, but I don't think I did well problem solving through it, nor letting him help. I am sure I didn't say a lot to him about relevant parts. Maybe it feels too private, and surely there are certain things I get to find to be too private, or maybe I was embarrassed, or maybe it was something else, but I think he's listened to months of my talking about the parts I was upset about but not moving on, while in reality I was doing so, in my own way. I'm there now. The day I became certain it was time to move on in my career and had good reasons and a plan for how to do it, a plan that probably involves the dreaded hospital, I'm good. I just don't think that is very clear to my therapist.

I'm really worried. There is a lot more to discuss because this just didn't get concluded last week, but I think he's giving up on me. I understand in ways, but in other ways I'm hurt and angry and confused and many other things. I have done a lot wrong, but I think there are ways he just simply isn't getting what I'm talking about because even when I try to explain Just Me 2005 edition and Just Me 2007 edition and why 07 is still trying to turn back into 05 with some improvements he can't seem to picture 05. He's not been there for the worst med reactions, nor has he ever seen what has happened to me on all antipsychotics. There are 3 more to go. The thing is that we can be pretty sure at least one will do something really bad. So far no antipsychotics have worked. Well, they work but they do bad things to my body. I felt good on one of them, good enough I think it might have made a major difference in my life, but it had dangerous side effects (scary blood pressure). I have good reason to be wary of these meds.

Today I talked to my psychiatrist a bit about whether my feelings about having changed abilities, etc is valid based on the 2 years ago comparison. I also explained my theory. She was supportive and I believe is going to try to talk to him to touch base. That in turn makes me feel squeamish because it's hard for me to think of people talking about me, especially when I know perfectly well one isn't so thrilled with me.

I'm dreading weeks of trying to work this out. I feel like I'm failing therapy, something I didn't really use to think was possible. I guess it's good I'm well enough to take this on because I've been aware for a long time something was wrong I didn't want to face, but still, this involves doing many things I hate, all at once.

4 comments:

Emilija said...

I think that when a person is not stable on meds, it is hard to "make progress" in therapy, at least in the ways that therapists want us to. That doesn't mean we can't make use of therapy, or that there aren't certain ways in which we can grow or learn. But things are going to be hard until the meds get straightened out, no matter how good the therapist.

As far as the meds go, I too have had every side effect under the sun. But I had one luxory that you don't have. I had the luxory of time. I went on disability for a number of years, and if it took my 6 months to titrate up on a med or stop passing out from orthostatic hypotension, I had that time. Now that I am working again, I am much more limited in what I can do with my meds when things need adjusting. If the intial sedation doesn't clear up over a long weekend, I can't go on it. As for blood pressure, my high dose Effexor gives me hypertension. But it is easier to take blood pressure meds than to find another anti-depressant that works.

Just Me said...

Well, a long time on disability is probably coming my way. I have chosen to continue to work and try med adjustments many times, but certain meds have meant time off. I have managed to arrange that without really taking time off; either starting during vacation, trading days to make long weekends, or whatever, but certain meds, mainly antipsychotics, are too much to start.

The problem I face still is that I have not yet been on an antipsychotic that didn't have dangerous side effects, or ones that were intolerable and not treatable. When I developed extrapyramidal effects on Geodon I didn't just get things treatable with Cogentin, I also had incontinence. Auto-stop. Risperdal gave me hypertension. Unfortunately it was not a little, it was dangerously high (200/1something) and I had 3+ edema. I wound up on meds for that for a year even after I stopped it because months of manipulation did not make it go down from the high moderate range of hypertension.

And then there are the actual allergies.....

Oh, and slow dosing....we've actually done that, with the general understanding I have to be patient about results. We've created doses for me. Sometimes this helps, sometimes not. The best example of failure though was abilify. The doctor told me she was afraid I might have some problems with it (I think she was afraid of it triggering mania). So I started on 1/8 of the usual starter dose or something like that. Within a couple days I couldn't focus my eyes and had akathesia. Actually she gave me Risperdal with microdosing, which was how I wound up being very lucky with my blood pressure skyrocketing.

I just hope the time off concept works for me this time...

I think the only med I've stopped because I couldn't adjust to it and work was trileptal.

But planning for extended time off means that I'll have time to try antipsychotics and be sedated. I'll

Emilija said...

I also couldn't take geodon and risperidol because of extrapyramidal side effects. Seroquel and Abilify are not strong enough for me, evidently. I've been quite manic and paranoid even on high doses of both. Zyprexa did it for me, although it has been quite a sacrifice. For one entire month, I was a zombie, and didn't know if I would ever come out of it. I finally did come out of the fog. I gained huge amounts of weight. I think that back then they didn't know how bad it was for weight gain. Maybe I would have worked harder to fight it. Certainly I might not have blamed and hated myself so much while I was gaining the weight. I actually tried going to OA, telling myself that I had become a compulsive overeater. But it has been worth it, I finally have a life again. Zyprexa keeps me stable enough to tolerate the high doses of antidepressants I need without getting manic, and that has made life worth living again. Don't give up! I had so many years on so many meds, in and out of hospitals. All I hoped was that life would become bearable. I never even dared to hope for happiness. But in fact, I am happy these days more than I could ever imagine.

Just Me said...

Emilijia-
You give me a lot of hopoe for my future. My psychiatrist keeps reminding me that either I'll respond to one of my remaining meds or ECT (which we still don't know whether I'm a candidate for; it is my preferred next choice I think) or I won't. If I won't we'll keep me as good as I can be until something comes along that works. You're proof that can happen.

Per my general pattern it probably won't be terribly long before I'm in an unstable place again. It'd be a huge deal for me to make it past SAD season starting without a change that we won't be able to handle with the depakote changes we've been so lucky to have had me tolerate lately. I'm actually doing well at the moment and hopefully that lasts, but I'm in the stage of the illness where each good day is a gift and none are counted on.

There is another drug (not Invega which I'm automatically considered allergic to since it's a derivative of Risperdal) coming out sometime soon that I pray is my saving grace...