I was having these anxiety attacks and I went to see a psychologist and she talked me through it and ways of me calming down. They’re so similar to auras, it’s difficult to tell them apart and sometimes I think they are one and the same, maybe I’m having the anxiety attacks when I’m having an aura, and my brain knows I’m having an aura, so it’s just overload, and I start to panic. It’s very hard to kind of go well it’s because of epilepsy because I think it’s part of epilepsy almost. It’s just part of, it’s one of the side-effects of epilepsy that it happens to manifest itself in my life because of my circumstances. And because I’ve been sometimes like slightly depressed, it’s part of that as well, it’s all intertwined and I find it very difficult to kind of pick apart and go, well I have anxiety because of epilepsy, because I don’t think that’s the case really. I think it’s all just different factors that come together to make me and I’ve had anxiety attacks but they’re a lot better now. I’ve never lost control in a long time really since I’ve had like these classes, the breathing exercises. And part of it is that I breathe up here and you’re meant to breathe down here, and that’s part of epilepsy as well and when I have my auras my breathing goes very shallow and goes right up here. And then I have seizures and I’ve no idea what my breathing is like when I have seizures, but I imagine it’s quite tight and quite fast and quite shallow because I wake up knackered and really out of breath.

It’s just stress really, like I mean I’ve had a couple of stressful patches over the last year and like stressful patches relationship-wise when I stopped eating and really didn’t look after myself very well. But the stress can make you feel very anxious and it’s not nice, ‘cos you just feel on edge all the time and you feel like ‘oh am I gonna have a seizure? I don’t wanna go out because I might have a fit’, like on the street. There’s been times when I’ve been walking in like department stores looking at clothes and it’s all just got too much for me. And I started feeling strange and I just had to get out but I really need to start sort of not thinking about it as much because even now I still think about it a lot, like a few times a day. But I need to start to forget about it, I might go and see my, we have an Epilepsy Nurse at the hospital which I go to, and he’s really lovely, he’s a really nice bloke. And if I do have any problems I can always ring him, or go and see him, so I think I might go and have a chat with him soon. Book myself an appointment and go and have a chat with him about the anxiety, and whether he can suggest anything. Because it’s not a nice feeling when you feel like you’re gonna have a fit, and you’re worried about it and but it’s just, ah it’s a strange one.

Is it constantly thinking about it?

Yeah just, just worrying about it really. Just worrying that it’s gonna happen, and whos gonna be around? Is there anyone gonna be around and when you have it to help you. But I worry for nothing, I’m a bit of a worrier anyway so I think I’m really worrying for nothing but I need to get my head round it is nothing and I’m just worrying unnecessarily. So he might be able to help me with that and I think it’s just taking your mind off of it. I think if my mind’s occupied with stuff, I’ll be alright but it’s when I’m not doing anything and my head’s reeling thinking about things, yeah.

To what extent do you feel that epilepsy diagnosis and everything that came with it, was the cause of depression or do you think it was only that? Do you think that was the cause of your depression?

That’s a very good question. And one that in my own case I can’t really extract the causes of it. I would say that in my years before I was diagnosed, it seems so so simple looking back what is it, as a teenager, at that time’ No I did feel life very deeply and things affected me and I know that before the evidence of my epilepsy ever arose I was inclined that way, towards a depressive nature. But certainly I say again the psychological blow that the epilepsy brought whereas life had been open to me before I was very much one of will, and I was going out to get the world and I was going to do it, I was able, I was able and active, in the mind and in the spirit, and it just felt as though this diagnosis had, again something I didn’t admit to myself, that it had killed something in me [laugh]. Which is why I say it’s only now that I’m able to find that there’s a new life to be had. I’ve been reborn [laugh].

What do you think has helped you to get through it?

Time. Time quite largely. I should’ve made more of support. I did attend an epilepsy support group once this past spring, very late, well I had been enduring all of this very much alone, very much alone because I don’t have much family support, much friends support. I’m a solitary soul, and yes this is why I throw myself into depression, I suppose.

I’m certain as well that a large part of it has to do with my own imbalanced psyche. It’s, it gets very very dark indeed. I crawl into a little hole, a very slippery hole [laugh] and I can’t get out. I’ve turned very reclusive, I can’t cope with life outside, it’s all outside of me, or people. I can just barely cope with basic life activities, just stay alive, sleep, eat, breathe, it came to that by this, this past spring, it was very bad indeed.

And to try to be sustaining a degree at the same time, yes it made things very difficult. My studies were very much affected, and I wasn’t able to paint. Tragic, tragic indeed. I was late on some written work, and actually that, that has been an issue. As I say, oh, yes of course’ As I say clarity of thought, exactly that, that is the issue, that was the issue, it’s slowly coming back, would you believe it.

I had to adapt to sort of life afterwards you know, without it, which, it has taken me a year and I’m finally now seeing the light at the end of the tunnel. And through all my bad times I had over the last year, I’ve always said that having the surgery was the best thing I ever did. It was the hardest thing I’ve ever done, the actual process of it. The physical healing was nothing, it was the mental healing that I struggled with, the mental side of it, not the physical side of it, because physical pain goes away easier than what mental and emotional. See it’s 25, 26 years worth of pain built up and it’s all just poof, it’s all sort of come to an end. It’s great, but it’s not been easy, it’s really really been so difficult because you know it’s just been such a part of my life for a lot of years.

I really struggled after, I had a CPN [community psychiatric nurse] for a little while and then I just saw a counsellor on a weekly basis. And then before Christmas I was really poorly again and now I’m under a psychiatric nurse, which, you know she’s helped me a lot, I’m picking myself up a lot. Again I’ve always found that with epilepsy you’re not allowed to be depressed. Because of my anti-epilepsy drugs, they’ve always been a bit, ‘Oh, you know don’t, we don’t want to mess about,’ but I’d come to the stage where somebody had to give me something to help me, there had to be something that I could take that wouldn’t upset my system and my tablets, and there was. I’ve been taking them for, I don’t know well since January I think. And although now I feel I’m ready to come off them, the consultant psychiatrist says you can’t run a marathon with your shoe laces tied. That’s her saying, she’s lovely.

Went to college, and I was still having seizures then, and they were still just like they were, they weren’t as bad as school really. But I had to quit early ‘cos I had depression at the end of the first college year because it was really getting to me, and other issues as well. So I went into hospital with depression , came out of there after three months to go into hospital to have the operation and spent a few days in there after the operation. But then come back out and after about a day or so, went back down with major depression, one of the side effects of it. Went back into hospital, three more months. come out, I still weren’t a hundred percent there was still a chance of me going back into hospital, but I didn’t in the end.

I was having a pseudo-seizures I think they’re called, where you just, it’s like a epileptic seizure, it’s what you get when you’re, like really depressed, you just kind of lose control and you just don’t know what you’re doing. That’s what they said I was having ‘cos I was like really, really down. I did actually attempt suicide a couple of times but ‘ nothing, nothing major.

At what point was that, before you went to hospital or?

Yeah one was before I went to hospital and, like, once in hospital as well. But nothing much really. I think they were just more cries for help.

Do you think that’s what it was for you?

Yeah.

Did you feel like that at the time or is it different now looking back on it now sort of a couple of years later?

Different now I look back on it. At the time I, you know, probably felt like I wanted to die but, now I look back on it, it’s probably they were just cries for help.

The psychiatrist that I saw for the anxiety was more general, and she just talked me through ways of dealing with it, other than about epilepsy in particular. She knew that I had it, and she touched on it, but it was more about I need to calm down and it’s all about kind of perception as well, and getting a better perception of what’s important and what’s not. ‘Cos I would have attacks over silly sort of things that I really didn’t have to be so panicky about, and I would do the little things to avoid doing the big things, and the big things would get bigger and bigger because I kept putting them off. And so she was like, ‘You just need to get a bit or order and rationale to your life, when you have that you’ll be fine.”

And that’s what helped?

Yeah, yeah, I think it helped a lot yeah. I think that all epileptics when you get diagnosed should go to, I think it’s clinical psychologist is what they’re called, I’m not quite sure, I think everyone should go and see. Because I mean, I remember I was quite young, I must’ve been 16 or 17, something like that, and I only got to see him a few times. And we played like board games and I drew pictures for him and we played ball games. We threw a ball to each other, he wrote notes while I was doing it, and at the time it seemed very obscure, and very kind of out there, and then he wrote it all down and I just thought yeah, that is, that is what I’m like. And he kind of pinpointed it so fantastically that I felt, ‘God that was so useful and I really was so thankful that I got to see him.

It was all quite sudden really. It kind of dragged on I mean, I did feel quite miserable for a while but not depressed. And then, one day I just went really down and, cutting myself and then mum and dad found out and I went into hospital and just felt really bad. And I just got fed up with life, and then like, as normal people do with depression, you just hate life and all of that. You know, you feel like you’re the only one with depression and epilepsy and, you feel like you’re the only one that’s having bad things happening to you.

How soon did your parents find out that you were self-harming?

In about a day or two, you know. They could see all the cuts on my arms and stuff. So, it weren’t that long.

And did you go then straight to the hospital?

Yeah. I didn’t go straight into proper care. I went into NHS care first and then, went into a proper hospital, yeah. It wasn’t nice.

Do you wanna say anything more about that? You don’t have to if you don’t want to, what was it like in hospital?

Not much to say it just, it just wasn’t nice really.

So you were then sixteen?

Yeah.

What sort of treatment did you have, did you have counselling?

Yeah.

And you got to talk about epilepsy and was that helpful for you at all?

Not really. It’s just the same as talking to anyone else about it. I didn’t really find it that useful.

Where you ever on antidepressants before you got diagnosed with epilepsy?

Oh yes. I’ve been on antidepressants three times [laughs]. I’ve only ever taken them for a week because all of those times one of my friends found out or saw them. Because I didn’t see any need to tell people about it. In fact I saw depression as something to be extremely ashamed of, most people do. And when my friends found them or when I told someone, you know just mentioned it, they made me throw them away because it was Prozac and you know there is a lot about Prozac. One of my relatives got very much addicted to it and it ruined years of her life, she had to go into rehab and things and it’s a very strong drug. I took it once for a week and the whole week that I took it I was fine and then I came off it, and I wasn’t on a strong dose, I was just building up and stuff, and the week afterwards I don’t remember at all. I just cannot remember it at all. Apparently I just floated around wearing really bizarre clothes and saying things that didn’t make sense. I think I was quite happy but I don’t remember it and that’s probably not a good thing [laughs]. So I mean antidepressants and me, not a good relationship and I don’t think. I know they help a lot of people but I don’t think they are necessarily a good thing to take and I think that there are things that can help you deal with depression better, like having supportive family and seeing professionals, talking about how you feel, having counselling and hot chocolate, lots of hot chocolate and books [laughs].

I had quite bad depression and they wanted to put me on antidepressants, and I said to them, ‘well okay that’s fair enough, but obviously you have to be careful because I’m on antiepileptic drugs. And the doctor said to me, ‘Are you?’ I was like, ‘Yeah. Yeah I am, yeah. See my notes in front of you? Yeah, that’ll be an epileptic patient you’ve got there. And [laughs], this was the first time I’d seen this particular doctor and he said, actually what he said to me, this was, this is great, he said, ‘I want to prescribe these antidepressants for you. And I said to him, ‘Right, but how will they, are they compatible with my antiepileptic drugs?’ And he said, ‘I’m not sure, take them and see. That’s actually what he said to me, ‘Take them and see what happens. And I said, ‘No, I’m not going to do that [laughs], I don’t think that’s particularly a good idea. So I didn’t take those, that wasn’t a good idea. But when I moved back down to [town name] I had a much better doctor and, she was much better, and worked out different kind of tablets and stuff. But from that point of view a lot of the time it has been a case of finding things out for myself, just because, I don’t know whether it’s just because doctors aren’t specifically trained in any particular field, I mean doctors, GPs have to cover everything don’t they. But then at the same time I’m seeing an epilepsy specialist, or a neurologist and even he had to think; even he had to flick through a medical dictionary so I don’t know. Yeah, a lot of the time it’s been a case of finding things out for myself.

‘Take them and see. It’s just something that you don’t expect a doctor to say. It’s like what about if they’ ‘Take them and see. What about if I. I mean what if I’d taken them and they’d completely clashed with my medication and I’d had a seizure and fallen off a building somewhere you know? It’s crazy.