For some of us, this is a question that our families or loved ones ask us. For some, like me, it’s a question we ask ourselves. We’re taking our pills. We’re sleeping eight hours every night. We aren’t doing drugs or drinking. So why the hell can’t we just get stable?
When I published my book, one of the people who read it told me that it felt very strict, particularly in the guidelines about not drinking. Personally I haven’t had a drop for over a year now. I haven’t used any illicit drugs for many years. I religiously take my pills (since diagnosis in 2011 I forgot my pills only once) and no matter what, sleep eight-nine hours. Every. Single. Night. Yet I am still rapid cycling and finding it hard to keep appointments, because while on Tuesday I felt great making an appointment for Friday, on Thursday evening I turned into a plant and stayed in this state until Saturday, when I jumped out of bed energised by the thought of buying a new Macbook Air. (I can’t afford a Macbook Air.)
There are many problems with medicating bipolar disorder. First of all is the choice of medication, which generates further problems. Perhaps Lamictal would be the best drug for you, if it didn’t also make you develop rash all over your body. Maybe, just maybe Risperdal would help greatly if it didn’t turn you into a cookie monster. (While taking Risperdal and being severely depressed I once found myself running to the supermarket, grabbing a pack of ready-made pancakes and a jar of Nutella, then returning home to inhale them.) So we have to make do with other choices, which might not work well enough. Lithium, the golden standard for many bipolars, doesn’t actually seem to make much difference to my cycling, but I have to admit it lessens the depressions a bit. Here I am, almost three years after my diagnosis, still not able to find the right medication. On the plus side, I gained 28 kg.
Another problem: most of the brain meds do not function immediately. They take months to start working. Or – not to start working. I’ve been on Lamictal for two and a half months. I had no side effects at all. But I also had no positive effects at all. My doctor told me recently that she thinks in months; if after two, three months it’s not helping, we’ll change something. But I think in days. If I am depressed today, I want a change. If I am not depressed today, I don’t want a change. With the speed of my cycling that might mean seven med changes a week, which is obviously a stupid idea, but it doesn’t make me feel any better about the fact that this morning I was fine, and now I am stuck in front of my computer. At least I can finally write a blog post, and I still haven’t bought a Macbook.
YET another problem: it is quite rare for a person in bipolar to function perfectly well on just one medication. I am taking Seroquel (anti-psychotic), lithium (mood stabiliser) and Lamictal (anticonvulsant). I also have problems sleeping, so we add Valium to the mix. The way my mood chart looks makes it pretty clear something is off. But what? Should I be taking more or less Seroquel? Should we replace lithium with something else, and if yes, then what? Is 200 mg Lamictal enough or not quite? Maybe I need more Seroquel and less Lamictal at the same time? Working on med dosages is akin to juggling chainsaws. Do I need an antidepressant? (I needed one on Monday, I didn’t need it on Tuesday and Wednesday, and I feel I need one today.)
Then there are the long term side effects. I was doing quite well on Depakine, too bad my liver wasn’t impressed. I had to come off Depakine, because after two years of taking it my liver values were so elevated that I would need a transplant before turning 45. Lithium is doing very bad things to my thyroid, so I am now on thyroid medication. What next? I will know in a few years, but my kidneys might start waving a white flag pretty soon. And I’m not even stable yet.
On the rational level I understand perfectly well that there are tangible reasons as to why I am not better. On the personal level I’m angry, and I don’t know where to direct that anger. My psychiatrist is obviously doing her best, my hospital has two bipolar specialists who discuss me on a regular basis, I am doing my best as well, timing every pill, skipping every party, saying no to an offer of a cold beer on a summer day. So why am I too anxious to leave the house and too depressed to clean the table after dinner? My significant other is much more patient with me than I am; he seems to understand my own illness better than I do. I just want to be fixed. I had a deal with my illness: look, I’ll take the pills and do the sleep thing and never drink again, and you will go away. But my bipolar responds “haha, no”.
All the guidelines – sleep, stay sober, avoid stress, take your pills – are just guidelines. If you stay up one night, you might not ignite a massive mood episode. If you drink one beer, world will most probably not come to an end. Those guidelines add points, so to say, to your anti-bipolar score. But sometimes even if you are a perfect patient, it’s still not enough. And people who ask “why can’t you just get better?” need to understand that. Even if those people are yourself.
Photo: Phil Whitehouse, “Juggling” (CC BY 2.0)