They kept assuring me that I would feel better but I wasn’t convinced. And I remember going through treatment being absolutely petrified and, I remember being put to bed after treatment and I remember having a really, really bad headache.
What happened at [name of hospital] was that after your treatment you were wheeled back through a ward in front of everybody, after your treatment, but you would come in and you’d may be, be drooling, or you’d be I suppose you kind of looked as if somebody who had had a stroke or something and the knock on effect was that it really affected the other patients. So much so that one of the boys that I’d met there, he was actually a soldier who had been in the first Gulf, that he totally flipped out and thought that they’d harmed me somehow.

The headaches were like something that I’ve experienced, sort of before or since. It’s completely indescribable. The headaches that I had afterwards. I do think that ECT is given that there should be a way of getting the patient back into bed without have to trail them through in front of everybody. Because everybody is in hospital because they’re ill and it becomes really frightening for them, and it may be that one of these patients that are witnessing somebody coming back are going to need that treatment which is going to make it even scarier for them.

[Husband’s name] was always terribly disorientated after hed had his treatment to the extent that he didn’t even know that hed received his treatment. He would be taken into another room where he was given something to eat and drink by the nurses after, after I’d taken him home he would have no recollection at all of having eaten or drunk something. He would always come home and have a sleep for at least two or three hours. And that’s where as I mentioned earlier his short term memory is completely shot to pieces because if you were to ask him what happened in his life during those ECT treatments he would have no recollection of those. But some of his memory would come back if I reminded him of what had happened.

During the time that I was having it, a friend of mine would come down to the hospital and wed go running together and I certainly on some days ran with her after having ECT [laughs] and I certainly went at the school, because I’m quite, what’s the word? Competitive. And they had the school sports then. They had the mums race and I did quite well a couple of years before, so I ran in the Mum’s race having had ECT and almost won but I kind of tried to lunge myself over the finishing line so that I could beat the person next to me and fell over unsurprisingly, as I’d had ECT earlier in the day [laughs]. So I didn’t win. But it was incredible what I could manage to do afterwards. Because I think I was so dissociated from what was going on that I just kind of did whatever I liked.

But really to be very honest with you, apart from the effect on short term memory I think ECT is a treatment which is very, very effective and has very little in the way of side effects. I mean I did worry about whether theres any long lasting effects of ECT like maybe brain damage or dementia or something like that, but my consultant psychiatrist has strongly reassured me that there is absolutely no evidence whatsoever that ECT makes you more likely to develop either Alzheimers disease or dementia, and in actual fact, shes told me that’s theres actual medical evidence, and published evidence, that untreated episodes of severe depression are much more associated with dementia than treatment with ECT. So if you don’t get adequately treated and you have long periods of recurrent depression which is severe, you’re much more likely to develop dementia.

And how, how were you sort of feeling for the rest of the day then?

A bit sort of zonked out. And it, like I said earlier, it definitely does affect your short-term memory. You know, I’d struggle to remember what had happened, you know, that day or the day before. So that’s a bit scary.

Was it just sort of events that you struggled to remember or was it sort of names for things?

No, not names for things. I could remember that sort of thing. But it, more events, things that had happened in the last few days.

And what was the emotional effect of that?

Of, of having memory loss?

[mhm]

I don’t really remember, to be honest. I think I’ve felt more emotions about the long-term memory, memory problems that I’ve had, which I attribute to ECT, although doctors will tell you that’s not possible. Because, you know, big chunks of my life are now missing, some of which were probably important or worth remembering [laugh]. So I feel quite sad about that, you know, round when my son was born and, you know, theres big bits of it I don’t remember, you know. He was young and I don’t remember some of his milestones.

It’s quite an odd question to ask in a, a way. Sort of what, how do you know that you can’t remember as the whole?

Well, because people tell me things, people will talk about things and I’ll say, Well, I don’t remember that. You know, not disputing that it happened but just not remembering that it, either not remembering it at all or, well, yes, not remembering it at all as…

And were these sort of whole months at a time or just small events?

It would be weeks, weeks that I wouldn’t remember or, you know, certain events that happened. And I, and people would say, Oh, you remember so-and so? and I would say, and I don’t think it’s just because I’m getting older, because this was happening when I was in my 30s, you know, 30s, late 30s and, you know, dementia hadn’t set in then [laugh]. But, yes, so that does bring some sadness, to be honest, and a bit of frustration because, you know, you don’t like to forget things.

And when I, in 1970 they gave me ECT when I was depressed. I had psychotic symptoms. And it actually took away seven years of my memory which never came back. And I don’t remember my son being born, I don’t remember the 1960s and that was in 1970.

And I feel like an incomplete person because of it.

What impact has it had in your life, you were saying the memory loss?

Well it bothers me you know, because theres no one alive now that I could ask about it really. My parents I can’t ask them they’ve gone. And it’s rotten to not remember the sixties and my son’s birth and everything else.

But the one particular thing that’s hit me recently that my daughter has given me that picture of her Dedication and I can remember who her godparents were. I can remember the songs that were sung at the Dedication, but the picture, the building is completely alien to me, the posters on the wall, and I’m just so frustrated thinking Why can’t I get that memory back? And I blame that on the ECT. You know, my first daughter said before I became depressed, so it was a memory before the ECT, but I think well of course I don’t remember, I don’t know how much memory loss I’ve had because you can’t remember what you’ve lost [laughs].

And, you know, even now I go back to things and the memory is just gone, and personally I think ECT is awful. I think it’s barbaric. I don’t think they understand how it works. I know my GP, my current GP thinks it’s very good and it does work. But I just, to me personally it doesn’t, and go back to previous patient, you know, perhaps the time out is what actually does work.

I don’t know whether the ECT actually helped her or not. I mean they say it kick starts, re-kick starts the brain for them and it would take, it seemed to take too long and then to turn round and say it worked, I don’t think it did.

And I know you talked to me about the shock of finding that there was memory loss in the short term, what’s been the effect on memory, if any, in the longer term?

She still doesn’t know or can’t remember the things that shes done with the kids. I mean whether that is because of that I don’t know, she couldn’t remember, it’s easier for her to remember things prior to her illness even now than it is since. I’ll always have things repeated numerous times and it gets, to be told oh I’ve, I’ve seen such and such a body today and I’ve seen such, and you know full well that you’ve heard this story seven times today but it happened six months ago, that I just sit there now and say yes, yes [inaudible speech] yeah, yeah anything for a quiet life. But still she tells me things as if it happened just, but I know full well it was months ago, in some cases years ago.

I think it was a, it had some sort of buffering effect. I stumbled through those few months in a complete daze. And I was safer in a daze, I was less driven to do harm to myself, less driven to do impulsive things. But it, it meant probably that the challenge of self-belief and self-esteem was more difficult, because you couldn’t even, you couldn’t even make a cake, let alone do anything else, because everything was just in a bit of a sort of foggy mist really. So I don’t think I felt like a real person. And I would have said that although I felt less anguished, I didn’t shift very much from believing myself to be fairly, fairly convincingly a waste of space because I did nothing useful and I couldn’t function very well at all. But, but I, I think it would be difficult to know really quite how much of a part ECT played in that. I wouldn’t want to look as if I was blaming it for something that may have been a corollary of lots of losses at the time. So, but I think the thing it, it definitely did was made me less clear thinking and less coordinated. So I was less likely to throw myself off a motorway bridge or that sort of thing, because I just wouldn’t have been well enough organised to do those things, I don’t think.

All I remember is that I was kind of well. I mean he described it as being kind of high. Whatever, it had quite a beneficial effect that was very short-lived. And, so it was like being given a tantalising look into what it would be like to be better. And in a way that was very difficult to feel, it was very difficult to cope with, that when I then went downhill again, having reached the treatment of last resort, well, that was it, I was finished. And I probably became more suicidal than I’d been before. In fact I guess I’m quite lucky to be here really, yeah, I guess it was quite close to just finishing it.

But I did find out, from my consultant and my wife that during this latest episode of illness which is now into its eighth month, just over seven months, I had a total of 39 ECT treatments which is a fantastically huge amount of ECT and my last ECT treatment was given on New Year’s Eve, and I’ve been reasonably well since the beginning of this year. But in actual fact whether it’s due to the fact that I’ve had ECT or whether it’s due to the fact that I’m on two different anti-depressants in addition to the ECT I have actually been a little bit on the high side. In other words slightly hypomanic. And never severely, but it has actually caused a lot of problem, because my wife can cope with me, no matter how severely depressed I am, and even if I’m suicidal she can cope with me. But the one thing she finds very, very challenging and difficult to cope with, is when I’m hypomanic. Because that’s when you tend to be more argumentative, and all the rest of it.

Anyway even if I’m only very slightly hypomanic, she finds that really difficult. And in fact the clinical psychologist I’ve been seeing, weve got a scale for people with bipolar illness where you actually monitor your mood on a daily basis and you grade it on a scale of plus five to minus five, with a middle zero being when you are completely normal mood, neither high nor low. Minus 5 is when you are in the depths of depression and plus 5 is when you are not just hypomanic, you are actually manic. Plus 5 is a very severe illness which requires hospitalisation. And I think in my estimation, even the highest that I’ve actually been in the last month has been only plus one no more than that, although my wife thinks I’ve probably been a little bit more than plus one, perhaps something like plus one and a half.

And that is the main reason why I’m not actually back at work yet. Because had I been given the choice, I would have actually gone back to work at least a fortnight ago. But I have actually now finally got a fit to return to work note from both my general practitioner and my psychiatrist. So hopefully the people at work will not really stop me from going back.