In a heartbeat: I may be in remission, but I’m not in control

Let’s start with the positives. I am well. I am pretty much entirely free of bipolar symptoms, so I guess I am in “symptomatic remission”. I’ve yet to attain the dizzy heights of “functional remission” – I’m working more than I’ve done in a while, on amazing, meaningful projects like qualitative research into women’s medication choices in pregnancy and delivery of Mental Health First Aid, and I’m beginning to be paid more often for my speaking and writing. But I’m a long way away from being able to work full time the way that I used to, and to be honest I’m not sure if I’ll ever be able to do that again. I get ridiculously tired even after a single full day of work and for every day worked, I need at least another day to recuperate. But I am well.

Yet I’m so nervous. Despite three continuous months of wellness I can’t relax, I’m scared to enjoy remission. Because, you see, I did not “overcome” the episode. I haven’t “beaten” mental illness. I haven’t “managed” my way to wellness, whether by my own actions or via any intervention by the NHS. Remission has not occurred because of anything I or anyone else did. It was simply time, time for the tide to turn and the four-year episode to come to an end.

This is scary, because it means that no matter how many drugs I take or how many self-management plans I draw up, my bipolar is not “under control”. If anything, it remains in control of me. It may be dormant at the moment, but I can no more control it than a seismologist can control the movement of tectonic plates. Bipolar has gifted me spontaneous remission, so spontaneous that it literally happened in a heartbeat. I know some people won’t believe that’s possible, it’s the truth; one minute I was weighed down by depression, a depression that was generating very detailed and specific suicide plans. Then next – it was gone and I was free.

But if bipolar can be generous, it can just as easily turn on me again. Twice in my life I have had the opposite experience, that of depression descending impossibly suddenly before sticking around for months. My first ever depression happened in exactly this way. Aged only 12, I was jogging around a temporary athletics track marked out on the school playing fields when a hideous something came suddenly upon me. It was like a bird swooping down, vicious claws extended, and it changed my life forever. I did not understand what was happening, what was wrong with me, but later I pieced things together from a book in the school library and found a name for the heavy sadness I now had to carry around.

At 25 I had a unrecognised, undiagnosed hypomanic episode after the birth of my second child. A couple of weeks into the abnormal energy and excessive elation it vanished, once again in the space of a second or two, plunging me into an awful period of my life in which I struggled hugely to care for my own children. Another episode happened 18 months later when hypomania segued first into depression then into a mixed mood, culminating in a suicide attempt. Having done its very worst, bipolar then checked out again for no discernable reason, leaving me in peace for an astonishing eight years.

Sure, there have been episodes where hypomania or depression has come on gently, gradually, episodes where if I’d known then what I know now I could perhaps have intervened, at least in the very early stages. But there is no way to take remedial action for a change that happens in a heartbeat. There is no time to prepare, to get your plan together, your resources in place. I know I should be trying to live in the moment, take each day as it comes but I’m finding that really hard. The knowledge that bipolar giveth and bipolar taketh away is hanging heavily over me, giving my happiness an edge of anxiety. I am well, but I am not in control.

About purplepersuasion

40 something service user, activist, writer and mother living with bipolar disorder. Proud winner of the Mark Hanson Prize for Digital Media at the Mind Media Awards #VMGMindAwards
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17 Responses to In a heartbeat: I may be in remission, but I’m not in control

  1. Ed says:

    I know how you feel. I am not “in remission” as such, but my (depression/anxiety) symptoms are certainly less prevalent than they have been. You almost feel you can’t make any plans, because “oh, I’ll probably be depressed in six months”.

    I eventually decided that if you thought like that you wouldn’t do anything ever. I guess I’ll take it as it comes.

  2. Emily says:

    Same here, never know when the curse may strike but just have to pretend everything is fine.

    I hate being defined by my illness though, I want to be known for things like “good mum” or “v creative” not “depressive”.

    It’s a vile vile illness that I have inherited from my poor mother, as she did before her and so on.

  3. savingmommyblog says:

    I understand how you feel. When I start to feel better, I get paranoid. I become hyper-vigilant of any early symptoms. It’s exhausting and draining.

  4. I’ve experienced the same thing with my illness. It can be very frightening.

    • I’m glad I blogged and tweeted about it, I have felt disbelieved in the past so it’s actually a big relief to hear that others have the same experience, thank you!

  5. It’s quite a relief reading this! Whenever I speak to doctors there’s always a lot of talk of ‘warning signs,’ but an ‘episode’ is like a smack in the face to me, I never see it coming, it just happens. I likened it to a switch, as quickly as I became poorly, I can become well again. It’s confusing, and a bit scary, because I feel like I’m lured into a sense of security without fully knowing how long it will last, or why I’m ‘better.’

    • Hey, Georgia! Yes, I am glad I wrote about this because quite a few people have come forward and said they have similar issues – whereas before I wasn’t sure anyone believed me! You are right, it *is* scary, because in the long run, what can we really do? :-/

  6. FoxyLady says:

    Yes – people don’t understand the speed that the change can happen – I don’t understand it either. with me at the moment I think sleep disturbance comes first, so I act after 2 nights and increase medication – I don’t wait for mood change. But even then I have no confidence this will always be the case and even after several years of “managing” it this way “successfully”, there is always that anxiety there about next time.

  7. Sometimes I feel like a character in a movie who is running down a dark alley, constantly looking back over her shoulder to see if the villain is in pursuit. It’s exhausting to be so afraid all the time, and any joy that I struggle to find is tainted by that overlay of fear.

    For me I think managing that fear is part of managing my depression. They go hand and hand – my depression and the fear of my depression. It’s quite a one-two punch! But it forces me to really think about acceptance and living in the presence. I’m not in control of my depression any more than I’ve been in control of countless other things in my life – but those other things were easier for me to manage, I guess. So these days I’m working on accepting that depression – and the fear – are both things that I’ll always have with me. And if today is a good day, I need to try to enjoy it – just for today. And if tomorrow is a bad day, then I need to weather that, too, knowing that I’m doing the hard work and putting the tools in place that I need to cope.

    Of course this all sounds lovely in theory – but reality is something quite different! 🙂 But I’m trying – and that’s more than I could do for a really, really long time. Here’s hoping that we can both emerge a bit, just a bit, from the shadow of this fear.

    • Let’s hope, indeed! I guess my situation is even more complex – I have not only depression to keep an eye out for, but irritable hypomania, anxious hypomania, elated hypomania, mixed mood, hallucinations and delusions. Sometimes the sheer range of crap that can happen to me feels absolutely overwhelming. And when I feel happy, I worry that it’s pathological. When I get tetchy, I worry that it’s pathological. When I get sad… you get the picture! Makes it so hard to relax and enjoy life.

  8. The fear of my lack of control over bipolar is the biggie we’re tackling in therapy right now. I’ve reached a point in my life where my periods of wellness, while they’re growing in length, aren’t enough to take away the fear of sickness. Sometimes I’m just having a normal “that’s how life is” kind of bad day and I end up causing myself so much anxiety over the thought of becoming mentally ill again, that I almost feel like I am. Every time I think I have a hold on my illness and my relationship with it, it evolves into something different. Ah well, baby steps, I guess.

  9. It’s so exhausting to constantly question every action/event/response etc as to whether they are relapse Nd to do this through fear. Last time I relapsed it was like a shovel hitting me in the face as had allowed myself to become complacent in believing I had fully recovered and I vowed not to allow myself to be that vulnerable again. That comes at a cost though and that cost is the endless self questioning of whether relapse is about to hit, I sometimes wonder if allowing a surprise would be easier.
    Anyway great blog – as always – and I shall stop my brain fart forthwith before I end up writing an entire blog post of my own right here!

  10. blessed800 says:

    Thanks for your honesty. Definitely can relate to the “needing days to recover” from one full and busy day. Who would have thought?

  11. Jessica says:

    While I don’t have bipolar, I have had months of illness, and now I am in week 3 of ‘remission’. I totally get what you are saying about the fear of it coming back and the helplessness you feel. I feel as though I am spiralling down into a deep depression, now that I am apparently well again, and the fear of it coming back has me examining myself constantly. I am more depressed now than I was when I was sick. I was so focussed on staying positive and trying to get through it, and now it seems like all I can focus on is the fear of it coming back. I’m depressed and I’m angry and I’m irritable, and oh so afraid. I can’t even enjoy my period of wellness. I keep having to tell myself to be grateful to be well, to be able to lead a normal life again. But the fear creeps in and all I can focus on is how afraid I am that this will not last. Every small sign that is it coming back pushes me deeper into depression.

    • I recognise this so well…and I don’t know what’s to be done about it. It would be foolish not to accept that more “bad weather” is coming – but how to accept that without spoiling the good times? I wish I knew the answer x

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