Fear and relapse

Not very long ago I was quite ill, in fact probably very ill indeed. Throughout my decades of illness, I have found it difficult to understand and recognise my illness; more recently I seem to have become more aware of my mood swings, and that they don’t necessarily align with what is happening or what I’m thinking. I always used to think that I should be able to change my mood, that it was ridiculous and selfish that it should be low when there was no particular reason, but I’m no longer sure that this is the case. This time, I have been aware that my thoughts were ludicrously negative, but it seemed to be secondary to my mood dropping; there was no easy way to change it.

While recognising my illness, all this is rather frightening. Previously I have been determined to fight it, and, although not very successful, it gave me a feeling of control. My relationship with my illness has always been difficult, and, without going into too much detail, I think this came from my parents, who found it almost impossible to understand, and seemed to me to be critical and to expect me to pull myself together and get better. I think this has changed over the years, but it’s hard to alter the beliefs of one’s youth, and I was left feeling responsible for my illness and that it was up to me to recover. Bipolar disorder is a chronic relapsing condition; for me the lows have always been worse, but the highs usually precede a low, which is hard to cope with. 

Obviously I am not always ill, and I have been lucky to have had long periods of relative wellness. I have also had long periods of mild depression and mild hypomania, as well as the times when I am more severely ill. And even when I’m well, I am often anxious, which quite commonly goes with bipolar disorder. As you can imagine, it can be very hard to know what is going on at any one time, and it is often clear only in retrospect.

Now is one of those unclear times. I am definitely less depressed than I was, and am managing to work, more or less. I’ve dropped some of my commitments from before I was ill, which has helped, but I undoubtedly went back to work too early. Realistically, about now would have been better, but I can never tell at the time. So I’m better now, but my mood is extremely variable, and at times is very low indeed. I am well enough to appear what I shall call normal when at work or with friends, but it’s not consistent, and I don’t know why. If I knew for sure that this was just a stage on the road to recovery I might find it difficult, but I would accept it. But my main worry, indeed fear, is that I will relapse and become ill again, and I don’t feel that I have any control over this.

I’m doing the right things – going out, seeing people, playing music, walking. Yesterday I even did a mini-run. But I am finding it exhausting – even depressing. People have been very kind at work, but there has been no formal help – I haven’t met with anyone since I went back a month ago, and my phased return has been of my own invention. Sometimes I really wish I had someone to talk to at times like this, someone who wasn’t my family or friends, but this simply isn’t available. My psychiatrist is responsive and helpful, but his role is around treatment rather than support.

I am also fully compliant with my medication, mainly because of the extreme fear of relapse. But I worry about it. Lithium doesn’t seem to cause me any problems, but I fear for my kidneys. Quetiapine always makes me put on weight, which would and will make me stop taking it, so I am sticking to a fairly strict diet, which has, so far, kept me at a steady weight. I don’t like it though. I worry as well about other potential medications, and fear I may need to start lamotrigine, although it affected my blood pressure previously. I can’t stand antidepressants – I don’t like how they make me feel (odd) and I hate the side effects. The pressure to take them can make me feel like this is all my fault, and this is difficult and hard to bear.

I think it is fair to say that relapse is more likely in the aftermath of being ill, and I am, at times, terrified. I am afraid of having ECT again, and I am afraid of not having it. I am afraid that I would have it too soon for too long, or too late with a worse outcome. I am afraid that my memory will be even worse. I am terrified of ending up in hospital. And I know that even if I do all the right things there is no guarantee that I will stay well.

For now, I am trying (mostly) not to look too far ahead. Each day that I get through is an achievement. Also, the days are lengthening and it’s becoming warmer which often helps. I am managing to write a bit, although it’s still awkward and word finding remains a problem. I’m writing a short poem each day, about something that’s happened, largely to monitor, and hopefully improve, my fluency. I’ve also read a book – I can’t remember a lot of what I’m reading, but am just persevering and accepting that this is normal for now.

I think the fear would lessen if I was able to accept the worst – what would happen and when, and who would decide. Staring into uncertainty when you’ve just emerged from it isn’t easy.