The entire reality of my bipolar diagnosis sunk in over time. As I've mentioned before, a doctor suggested I was bipolar in December of 2000 but it wasn't something I would consider or allow to be true until July of 2002. In May of 2002 I agreed to use lithium to supplement my antidepressants to treat my severe depression. In June I began to see patterns in my moods through starting counseling, and I began tentatively reading about bipolar disorder. In July I read enough to know I was bipolar, and I was able to confirm it with my therapist, very shortly before heading off on a manic reign of terror.
Over the next several months I went through many emotional processes involving my diagnosis. I will always appreciate the honesty my doctors provided, balancing it with hope. I was given a lot of information, but never too much in those months. Actually I'm not sure there was a "too much" because I wanted to know as much as I could so I could be in control.
For a time (months) I dealt with the question of "why?". I don't think I was too hung up on "why me?" very much because I'd been in healthcare long enough to know that terrible illnesses are random. It was hard to handle the idea though that these illnesses occur, that life plans can be so easily disrupted.
The "why" questions did relent over time. I don't talk about my faith here and I won't really now, because I want this to be an open space for people who may not share my faith, but in this part of my story, faith was the answer. I knew that I had this illness because God had always planned for me to have it. I had the bizarre version that I have because that was the version God can use through me. I picked this career that does not mix well with my illness because somehow I can help them mesh. All of those things I was able to handle, although I did go through the usual grieving and anger that comes with knowing that life is not how you expected. I really struggled to believe that just because I made plans for my life doesn't mean that they are the plans God had for me. That one still gets me sometimes when I am hurting about losses that it seems "everyone" else gets: children, a social life, energy, the ability to take care of one's home and life independently, etc. Sometimes I struggle most with things that are fairly stupid, like anger that everyone else seems to move out of therapy or at least advance to less frequent visits and I keep hanging in there week after week and sometimes more than that. I am just about into my 3rd chart in nearly 5 years there. I see the psychiatrist every month without fail as well, and heaven only knows how thick that chart is.
But normally I'm at peace with this stuff most of the time. I get frustrated, but that's separate from the "I hate my life, this isn't fair", sobbing, gasping conversations I had with God 5 years ago. Those were normal and part of the grieving I needed to do when I saw that things I really wanted and that I had worked hard for would not happen. Over time I found ways that bipolar has been good and these things have taken the place of much of the hurt and anger.
Yet it seems I still am unable to comprehend that "yes, really, really bad things can happen to me". This week my doctor brought up Clozaril for the first time as something to consider for the future. Clozaril is a last resort drug, even according to the people who make it. Why? Because it can kill you. There is a decent risk of causing problems with white blood cell count, meaning that your immune system is messed up and if it's not caught quickly it isn't reversible (as I understand it). Further, there is a 3-4% chance of it causing seizures, although presumably I'm on enough Depakote to prevent all seizures forevermore. When you are on it you get weekly blood tests for a long time, then biweekly, and after a full year of tolerating it you move on to monthly testing. Not so much fun.
It's not time for me to take Clozaril yet. It's not even time to think about if it's something I want. She was letting me know it's there if I need it, that there's still hope. Because I am getting closer to the bottom of the barrel and we both know it. This lithium trial seems to be going ok, but it's a shot in the dark.
However, I have been reminded yet again that life just isn't something we can plan. I had a really lousy growing up with some really, really bad people in it. I had the mistaken idea that this meant I would be OK as an adult. When I moved past that idea and accepted that child abuse exempts me from nothing, even when I worked very hard to overcome that abuse, I thought I was being strong and accepting recurrent major depression. Then I thought I was being strong accepting that I had bipolar, especially when the Guru told me that my cycling was so rapid I would not get more than a partial response to drug cocktails of 3 mood stabilizers plus whatever other meds. I thought I understood what my life would be like, and then this last year has taught me that even my changed ideas weren't taking into consideration how powerful this disease can be.
I've known for a long time that my poor med response was an issue. I've known that it made everything harder, of course, and that it significantly lowered my prognosis. I've been angry that I can only stay well so long on any given combination of meds, and that nothing has been easy.
But somehow I can still be surprised. Because I know that if I get down my list to Clozaril and it fails then my whole life will drastically change for the worst. I trust that this won't happen, but I know too that it can, and might, and that I'll deal with it if I must.
Odd though that surprise is my greatest reaction. Because I know that my doctor knows I know precisely what mentioning Clozaril means, and she does not do such things lightly. Meaning she thinks it's good for me to have time to think about the possibility. And truthfully, right now I'm about 3 major episodes away from it being about my only shot.