This year hasn’t been great – quite ungreat, actually. Lots of depression, lots of horrible treatment, some irritable and elevated mood and some shorter times of feeling reasonably normal. The problem with feeling better, though, is that it hasn’t lasted, and it’s all very hard to predict. Here I am having ECT again. I thought that after last winter I would be able to wave goodbye to it for good, but not so. Things aren’t as bad as they were then, but I can’t work just now, and I don’t know what will happen next.
It could all be worse. On this occasion I’m having unilateral ECT in the hope that my memory won’t be as badly affected, and I think it is better. The problem is that I can’t actually remember what I’ve forgotten, so it might not be as good as I think, but my ever tolerant husband thinks that it is a lot better. What I’m hoping is that if I need to have maintenance ECT, even for a while, then that will be less often, and I might actually get back to work, but who knows? I have quite a lot of worries – that I may not recover enough, that I’ll recover too much, that my illness is generally becoming worse, and I can expect less stability – but I’m hopefully overthinking things. And I know I’m a lot luckier than many.
I do think ECT helps me. I know there are others who would not agree – who don’t consider that it has helped their symptoms, and, worse, that the side effects, largely affecting memory and cognition, are intolerable. They deserve to be listened to, just as much as I do. But for me, being denied ECT would potentially deny me the chance of getting better. I’m also taking medication, which I hope will keep me well, although for me, the side effects of the drugs are generally worse.
Side effects are always interesting – as clinicians, we must ask about them. And in my view we must ask specifically, as well as starting with open questions. There are side effects that some find hard to mention – for example effects on libido, and also on weight. The latter could be obvious, but not necessarily, and people may feel ashamed or even unattractive as a result of both of these, which isn’t always easy to admit to. Obesity, to some degree or other, is fairly common on antipsychotics, and it’s very hard to shed. One of my other pet hates has been the effect on oral health, probably down to dry mouth, and possibly also craving sweet things. My teeth are hanging on – by the skin of their teeth! – but much has been invested in keeping them there. A lot of effort also goes into trying not to eat too much, but I challenge anyone on a healthy dose of quetiapine to maintain an elegant silhouette. I suppose it does send you off into a lovely sleep, but getting out of bed is considerably harder. I always like to boast that lithium not only seems to work well for me, but has no side effects at all – but there’s always my kidneys simmering away at the back of my mind, waiting to cause problems. Hopefully not.
I don’t think I can write much more. I’m trying to think, and I can’t think properly, but this morning’s ECT is probably to blame. I wish staff wore big badges in the ECT suite. In the bad old days, especially when treatment was in the old building, I was hard pushed to learn or remember anyone’s name. This year has been the first time that I’ve been able to keep my contact lenses in, and that does make a massive difference, but I still don’t recognise most of the staff, or remember their names. Today was easier, as I saw someone I knew from work – bizarrely it was comforting, as I knew who they were. I will persevere. It’s difficult, having an illness and treatment that people view in different ways, and about which they have a multitude of beliefs. I first became ill some decades ago, and it’s been very hard to accept. I have thought and written about it, and that has helped, but there will always be some doubt expressed by others, and sometimes even by myself. And in 500 years’ time, what will people think about our mental illnesses and their treatments? But perhaps this doesn’t matter. Perhaps the most important thing is to share and understand to the best of our ability, and if things get better in the future, to celebrate this. In the meantime, we must just do as well as we can, both for others and ourselves.
Hope you feel better soonest 🙂
Thanks for sharing this – I am cheering you on !
Thanks for sharing Rebecca! I’m cheering you on from Canada as a fellow healthcare provider (a nurse) who has had similar experiences with ECT. I’ve been fortunate of late in that I haven’t needed any ECT, my last round being back in spring of 2021. It’s always with mixed feelings that I turn to it. I did find unilateral to be a bit easier on my brain in general, shorter recovery time and less impact on memory and function. Meds and therapy (very frequent therapy sessions!) have been keeping me pretty stable. Like you, I find it reassuring to know that ECT is my backup plan should these things fail and I would be anxious if it were taken from me. Wishing you all the best for your treatment and hoping you’re back in the game soon!!
Thank you!
So brave to write when you are feeling bad. So many are supporting you. Hoping you are feeling better soon.