Bipolar disorder is a rather all or nothing term, which can, at times, be quite misleading. It implies that you are either delving the depths of misery or riding a wave of elation – or maybe entirely normal, if you take your treatment like a good patient. Except it quite frequently doesn’t work like that.
For me, the excesses of joy appear to be well controlled now by a mood stabiliser, which I suppose is good. I must admit to occasional fantasies about stopping it, but realistically immoderate bliss doesn’t always work out very well, and, at the very least, can make you appear a bit stupid. Embarrassment and misguided decisions can follow, and it can be life-threatening for some.
Conversely, my own experience has been that low mood is unfortunately a bit of an ongoing problem, for which I’m currently having maintenance ECT as well as nasty medication.
My question, though, is what should I expect? Firstly, what is normal, and why should I want it, especially if it’s decided for me? How can this ‘normal’ possibly be the same for all people, all cultures, all diversities, all ages? My expectation of it may well be quite different from yours. And what I feel is normal, or even good, for me, may not be what someone else thinks. I have had the dubious pleasure of being the subject of various psychiatrists over the years, and what makes them decide if I am depressed or high?
The last couple of years have been a bit rubbish for me, and if someone asks me, I’ll probably say that I have had a relapse of depression. I wish it was that simple. ECT has played with my memories, but I think I can remember a fair amount. But can I? What I remember feeling like doesn’t quite match with what my husband describes, and sometimes I wonder if my memories are in any way accurate. I don’t clearly remember feeling depressed – it’s almost more like a memory of a memory, which I then start to doubt. At worst, I wonder if I’m making it all up, or have a personality disorder. But why would I do that?
More recently, I’ve been thinking more about the moment I’m in just now. I don’t think it’s possible to recall severe depression, or indeed many changes in mood – all you have is the memory of it, and then the memory of that memory. This makes it very difficult to look back at one’s life with a mood disorder, as it is inevitably influenced by one’s current mood. I suppose it’s a bit like remembering being hot when you’re cold, or vice versa, but I think that’s slightly easier. Taking it a step further, there’s no way to prove that one’s memories are accurate – or even happened – but it gives you something to work with.
So for someone like me, with a diagnosis of a mood disorder, please remember that nothing is particularly reliable. You may have seen me depressed, euphoric, or, if you’re lucky, normal, but even this may have been manipulated by expectations – or treatment. Medications can sedate or elate, and, as a psychiatrist myself, I know that an established diagnosis can influence how one interprets a patient’s presentation, at least to some extent. Of course this isn’t always the case – someone presenting severely manic is unlikely to go unnoticed – but what will they later remember, given that their state then was completely different?
My memories of my moods and beliefs are quite muddled, whereas my husband copes with my illness – if that is what it is – by seeing it in a very black and white way. Either I’m well, or I’m ill. I think this can make it difficult for both of us, in that he is very caring when I’m ill, but finds the transition challenging. He remembers the last couple of years as periods of severe illness, which were treated with ECT, interspersed with periods when I was better, and back at work. For me, it’s much more murky, and remains so, maybe because I’m still having maintenance ECT. Neither of us can know if this works, but both of us fear the consequences if it does, and I stop it.
Work has also been difficult, which may be partly my own fault. Throughout my career, I’ve been determined to continue working, unless I really couldn’t, and reluctant to do less than others. I have worked less that fulltime, but then so would lots of people who had three children, and I’ve always tended to try to do extra. I’ve realised in the last couple of years that this may not be sensible, but I’m not very good at explaining my illness and its difficulties – largely because I’ve always wanted to hide it, or prove I was just as good as others without such potentially stigmatising labels.
I don’t expect any answers to all this; the more I think about it, the more confused I get. It’s not like I’m ever going to remember the definitive version, but that doesn’t mean my thoughts don’t count. No-one can be sure they’re right, not my husband or any of the psychiatrists I’ve seen; and none of us can ever claim that their memories trump those of everyone else.
Meanwhile, I am making a new effort, one that I’ve always avoided where possible. Exercise is probably good for me, and, despite my dubious memories, I’m fairly confident that I haven’t done much over the years. A brief foray into running left me with sciatica, but – so far – the indoor exercise bike is proving a success. Probably because you don’t have to go anywhere and it doesn’t take much time.
And ultimately, whatever my opinions and my memories tell me, I need to do things to keep well, and I am making that effort – exercise, music, literature, sensible diet – and even work. And if these are insufficient, then I must swallow my pride and listen to the views of others, however unpalatable they may seem.
I admire you SO, so much — you are amazing. Your book? Nothing short of brilliant!
So I’m forcing myself to write this as I hope you don’t despise me for being an annoying squaky wheel…
Please consider trying a strict ketogenic diet specifically for bipolar disorder/depression.
I would not advise you to do this on your own. I strongly recommend Dr. Erin Bellamy of IKRT (Integrative Ketogenic Research Therapies) for one-to-one coaching; I took her group program as I already knew the basics before I joined IKRT.
Like you, I’ve had many ECT sessions, meds galore, numerous psych unit stays. I thought exercise would help; I’m a former A.C.E.-certified personal trainer; I knew what to do – it didn’t do much for my mood.
I’m still taking bipolar medication (lithium & tranylcypromine) but doing a medical ketogenic diet has helped me enormously in addition to my medication.
I don’t mean to sound like a Metabolic Psychiatry “cult member” – a well-formulated medical ketogenic diet for bipolar disorder CANNOT eradicate my intense grief over the loss of Lucy, but it has been one of the best modalities for me apart from the lifesaving ECT I had and medication.
Dr. Bellamy is wonderful (like you!) and I think her guidance and this approach is worth a try.
Sending you my very best across the pond,
Dyane
Thank you so much for this – I have been more interested in the ketogenic approach – I’m just not sure whether I could do it completely. But it’s very compelling. I had asked my psychiatrist about it, but have since found myself with a new psychiatrist, rather sooner than I expected. In a good way, I think, and may be an opportunity to think differently.
I’m finding exercise is making a real difference to me – I was quite a couch potato!! But life has been a bit challenging recently, although I will manage.
Do you think that one has to embrace the ketogenic diet completely, or can a partial attempt help? I cut right down on eating bread a year ago – largely to avoid gaining weight due to psychotropics, and I think it’s made a difference.
And you have all my sympathy for Lucy – we lost our Lola last weekend, and it seems so empty without her – so very sad.
Take care, Rebecca Xx
Rebecca! I’m so sorry I wasn’t notified of your kind reply so I’m glad I hopped on here by chance. That is fantastic you’re exercising, especially since you were a couch potato like I used to be, LOL !I’m very proud of you!
To answer your question about the medical ketogenic diet, yes, one has to commit to it 100%. Cutting down on bread it an enormous first step. I live in a house where bread is bought on a daily basis. I used to eat heaps of it at every opportunity! The bizarre thing is……I’m never tempted by it anymore, but if you told me that at the get-go of medical keto, I would’ve thought you were bonkers.
It seems like going all-in to this new regime would be a pain in the derriere, and at first it’s not a walk in the park, BUT I believe this lifestyle is absolutely worth trying out. You can always stop doing it after giving it a proper go (3-4 months.)
So please think about doing this: visit Metabolic Mind’s website where they have a PDF you can download to share with your new psychiatrist; just go to the link below, scroll all the way down to “How to Talk to Your Doctor”
https://www.metabolicmind.org/peers-families/get-started/
And thanks so much for what you wrote about Lucy; my heart goes out to you about Lola. “Empty” is the perfect word to describe my heart and our home atmosphere. Three years into doing medical keto for bipolar, I’ve found that it helps bipolar and perimenopause/menopause/post-menopause in a myriad of significant ways, but it does not magically eradicate one’s grief journey.
There are many “smug keto” folks out there who imply that keto “fixes” everything; ignore them! 😉 I don’t consider the ketogenic diet a cure for my bipolar disorder but others do and we’re all different.
If you have any questions down the line, please don’t hesitate to email me. dyaneleshinharwood@gmail.com
I check email the most. 🙂
Take good care; I hope this reply is even a teeny bit helpful.
XOXOX
Dyane
Thank you for all this! I’m looking into it; if I’m honest, still not sure, but want to understand it more for patients as well as myself, so this is so helpful! I’m still getting used to change in psychiatrist – funny that it makes such a difference, but I’ve been very lucky. With love Rebecca XX
p.s. please forgive my egregious typos – I’m writing this without my specs.
Alas, my ketogenic diet has not helped my eyesight! 😉
Memory is such a fickle thing. I know bipolar disorder is associated with poor memory particularly in hypomanic/manic states. My wife thinks I use it as an excuse for previous poor behaviour but I really don’t. To add ECT to that worries me greatly. Yet, occasionally a specific memory will come to me vividly clear and I think, accurate. But did I make it up??
Most of my memory is visual, pictures without a narrative, so “unlabelled” and impossible to get in the right order, like all those holidays in France with the children, just one event spanning several years. Whereas, my wife remembers the words, dates, with apparent undeniable precision. At least, that’s what she says…
Wonderful piece of writing, Rebecca xoxo
Thank you so much!x
I think knowing and acknowledging that one’s memories may not be accurate is the first step to something! I’m not quite sure what, mind!