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Donna - Interview 15

Age at interview: 28
Age at diagnosis: 3
Brief Outline: Donna was diagnosed with temporal lobe epilepsy when she was 3. She had very severe and frequent seizures for years. She had neurosurgery two years before the interview and has been seizure-free since.
Background: Donna is 28, a housewife and lives with her husband and four-year-old daughter. Ethnic background / nationality' White British.

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Donna is 28 and a full-time mum to her 4-year-old-daughter. Donna was diagnosed with temporal lobe epilepsy when she was 3. Two years before the interview Donna had neurosurgery to treat her epilepsy and she has been seizure-free since. At the time of the interview she was coming to the end of the surgery programme and was due to stop all epilepsy medication within the next few months.

She says school was hard for her as she wasn't allowed to do things she loved, like swimming and trampolining. After leaving school, she did a training course and worked with children with disabilities for a while. Then she moved onto doing other jobs but Donna says epilepsy stopped her keeping employment as her seizures were so frequent. At worst, Donna was having 40-50 seizures per month. She hasn't been able to work for 12 years. She has however been doing voluntary work and after her surgery programme can again do more of that.

Donna always knew she wanted to have a child and at 23 she and her husband decided to go ahead. She was on Epilim (sodium valproate) at the time. She had to come off it and start taking folic acid before trying for a baby. She said being pregnant was a really worrying time for her as she was having seizures and once she fell down the stairs. Happily, she gave birth to a healthy baby and she says having her daughter was the best thing she has done.

When she was 25, Donna' doctor suggested the option of neurosurgery; the medication wasn't working and her seizures were out of control. Her epilepsy was caused by a localised scar in the brain which made her a potential candidate for surgery. The surgery was preceded by two years of tests and Donna had her surgery in June 2005. She says the mental and emotional recovery from the surgery has been extremely hard; “learning to live without epilepsy” has been one of the hardest things she has had to do. She says after surgery she tried to "put right 25 years of her life in 6 months," and wore herself out. As a result, she has suffered with depression and is only now starting to come through it all. Despite the bad times Donna says she doesnt' regret having the surgery and she is now seizure-free!

Donna's journey with epilepsy has been long and hard - she says it's her own character that has pulled her through, as well as trying to focus on “things that I have got, not what I haven't got”.

 

Donna wanted an antidepressant to help with her moods, including anger, but she was just given...

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Donna wanted an antidepressant to help with her moods, including anger, but she was just given...

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I think it was winter time [when depression first started]. I was looking at some of my notes and I think I went to see the psychologist in October and I filled a one of their questionnaires in, and it says that I was suffering from significant levels of anxiety and depression and that was October last year. 'Again 'cos of my epilepsy nobody gave me any tablets so it just got worse and worse and worse. I wasn't prescribed anything, until January of this year, till I just got to the point where I just, oh I couldn't cope anymore. They'd been giving me sleeping tablets for a little while, and I said, 'But I don't want sleeping tablets. I want something to help my mood.' I was like a kettle boiling. I'd be okay one minute, I was very angry, very bitter and obviously my husband got it because he was the one that was here, I was just very, just angry with the world, I just felt angry.

 

Donna describes the various tests she had to find out if surgery might help her. The type of...

Donna describes the various tests she had to find out if surgery might help her. The type of...

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I've got a basic standard programme, surgery for epilepsy frequently asked questions, I was given just the basic leaflet, which is sort of what the procedures are, what you have to have done. Out of these procedures I had them all done, I had the video telemetry done, which is the EEG machine sat in hospital. I had the neuro psychology tests which test your memory, language and the effect epilepsy has on your quality of life and your emotional wellbeing. And I had the Wada test, the side of your brain is anaesthetised for a few minutes, and then they do simple memory and language tests. And then they do the other side. I had that done.

The next step would be to have the inter-cranial, the electrodes, have that done because I presume it's more to the core, you know more focussed to the point. I sat in hospital again for three weeks, waiting for it to happen again, and it did eventually, happened in the last week that I was there, I had some seizures. Then I think it was about six months after that they wrote to me and said that they'd found what they want, they could see where it was coming from, it's very localised. That's when they said that I could have the surgery, then I started having the neuro psycho-pyschology tests. That was like being at school. Ooh, that was awful. Having to sit in a room and it was very educational, you know seeing what I could remember and what I could retain and what I couldn't remember. Faces and that sort of, them sort of tests. Asking me could I put a name to the face, and so that was quite difficult. And after I'd had all the neuro psychology tests done, they said there wasn't enough information from the written side, and that's when they told me I'd have to have the Wada, and that's where they put one side of the brain to sleep. It goes straight through your vein I think, it's a bit gruesome really isn't it. Straight through your vein into your brain, they put one side to sleep for a minute I think, or something like that, or a few seconds, I don't know. Ask me what day of the week is it, and who's the prime minister, only very basic questions, and then they did the other side.

The neuro psychologist said I was one of the best candidates that they've ever had. She said, 'You was very calm, very, very relaxed' and she said the results was very good, very positive. I always remember her saying, she said, 'It shows what a perfect candidate for surgery you are.' So, that was really positive, the Wada test 'cos it just showed that what they was gonna do was gonna be good. It was going to benefit me. She said a lot of people get stressed about it, but I'd got past the point of being stressed, after I had the electrodes, now if you can have that done you can have anything done. 'Cos that was blooming awful. The pain was horrendous afterwards, you know coming out, and it was so uncomfortable, for three weeks having these things in, in the surface of your skull. That was really uncomfortable so I thought well, I've had that done so you know bring it on, I don't mind any more. I did get to that stage through the programme where I thought well now I've had the electrodes done I think I can cope with anything. In fact, I felt less pain after I had had the main surgery that what I did when I had the electrodes. I was in more pain when I come out of the surgery with them in, than what I did when I'd had the main surgery.

 

Donna's consultant suggested brain surgery because none of the AEDS had controlled her seizures...

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Donna's consultant suggested brain surgery because none of the AEDS had controlled her seizures...

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I was under a consultant, you know here, went to the consultant like I did every six months or so. He said I, he said I don't really know what I can do with you anymore Donna. He said, 'I'm a bit stuck' he said, 'We've tried this, we've tried that, we've tried such and such,' he said, 'I think you'd be a good candidate for surgery, and I'm going to pass you onto one of my colleagues.' 'Oh, okay.' So I was a bit shocked really. My daughter was only about six months old, and, as I say, and we just took it from there., went to see another consultant to another hospital where I had the surgery, and obviously he had all my notes and all my background and such like and he told me what it involved and then I met the surgery programme co-ordinator, and she gave me you know one of their leaflets and said what's what, and it just sort of went from there.

 

Donna describes the first few days on the ward after her surgery. Back at home, she didn't want...

Donna describes the first few days on the ward after her surgery. Back at home, she didn't want...

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I remember going back onto the ward. And obviously being a bit groggy for a few hours, but must have took me by the next, I was sat up. I knew what had happened, 'cos I remember the surgeon coming to see me, I think, the day after, and I remember him saying to me, 'God you look well considering what we've just done to you!' 'Cheers, thanks.' And he said, 'You look really well.' I was sat up in bed and I was chatting away. I remember my husband and my mum coming to pick me up, I had the surgery on the Monday, went in on the Thursday. I remember mum and my husband coming to pick me up, and they walked, they'd just walked in as the nurse was changing my dressing, and I saw my mum's face and I saw my husband's face and I went, 'What? Is it that bad?' And I thought, well I've got to have a look because I saw the shock on their faces, so I went to have a look, oh it was awful! They'd put metal clips in, obviously I had no hair this side, it was all shaved off, and I must have had about 25 stitches from here to here, ooh it looked awful. But it just looked awful, because of the staples. The staples are just not very nice. So poor old, poor old mum and my husband walked into that, my mum's face and my husband's face, that thought, well I've got to have a look, and it weren't very nice. I think because of where it was, whatever went through their mind, the thought of it, and seeing the scar and the staples. 

They come out within a week, they did, and I was walking about on the street. I wasn't ashamed of it, I didn't walk around with a hat or anything on. I don't do hats! My mum brought me a hat; I said I'm not going to wear that. And the mother of my husband's two daughters said, 'God you're so brave, walking about and doing your normal,' but that's just me. I should've been in bed but I was walking about doing my normal stuff and doing my shopping the following week. But I wasn't ashamed of what, 'cos I couldn't help it. It was one of those things you know I couldn't sort of stay in the house until my hair grew back, it took about 7- 8 weeks until it grew till so it covered it. I mean it's took a year, this side it's still a bit thinner than that side, but 'cos I've got thick hair, it don't matter does it. I said to my hairdresser this is the only time in my life I've been grateful to have thick hair. Cos it's covered it all up.

A lot of people wouldn't have gone out of the house, but I wasn't ashamed. I remember going shopping and you know what kids are like, I remember seeing this little boy staring, I said to [husband's name] I bet he's wondering, 'What on earth's happened to her?' But, because I'm not a vain person anyway and I don't do hats, mum said, 'Are you sure you don't want a hat?' I said, 'No, I don't, I don't like hats.' And I just carried on doing my daily stuff. Well it gave people something to look at didn't it?

 

Donna fell down the stairs when she had a seizure during her pregnancy but the baby was fine.

Donna fell down the stairs when she had a seizure during her pregnancy but the baby was fine.

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I can't really specifically remember having the fit, but at the time I lived in a maisonette which is like a flat with stairs. I remember obviously not feeling too good, and then the next thing I knew I was at the bottom of the stairs and my husband was saying, 'Oh look we're going to the hospital to make sure you're alright, make sure the baby's alright.' Obviously I was worried, I think I remember panicking and I mean for a while I was a bit, 'Oh I'll be alright, I'll be alright.' You know like you are as you're coming out of a fit, it takes a while to sort of realise what's happened. But I remember I think once I get up to the hospital and sort of recover from the seizure, I obviously I very worried. I was thinking, 'God I hope everything's okay. Hope...' and obviously they give, did a scan and they said that she'd not moved. The baby'd not moved. My husband always says, 'Well she's a hard, she's a little hard nut isn't she?' She didn't, the baby had not moved from the position from when I'd had a scan three weeks ago. So obviously you know the bump couldn't have been that bad. Maybe was for me but not for her to move.

 

When Donna's epilepsy was really bad, she became dependent on her husband. Their relationship ...

When Donna's epilepsy was really bad, she became dependent on her husband. Their relationship ...

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It [brain surgery and being seizure-free] affected my relationship with my husband, very very dramatically.

In what way?

Because he was my carer, and he'd done that for sort of six, seven years, I'd have this done and he thought that I no longer needed him. I was trying to come to terms with my emotions, and obviously he was trying to come to terms with his. It's been a rocky sort of year for us both. At one point we nearly just gave up. And, again that's really all through how he's dealt with it. Again that's something else that people don't seem to understand. It's the ones around you; they've got to deal with it with you. And if you've got no support, and no back up you know, you're a little bit on your own aren't you? And again, this is something else that I'd been told by specialist that it does happen, and this certain person said, 'I feel that we should be doing something more for the families,' she said, 'Because again so many times we get this come back, you know we get this sort of, oh my husband hasn't coped with it, or my parents haven't coped with it.'

The way I see it now, if I don't know how to deal with it, how could I expect him to know how to deal with it. If I couldn't get it right in my head, how could he get it right. Hopefully we'll be stronger for it. You know we've only been married two years and again, we've been through a lot. Most things that me and my husband have been through in two years a lot of people don't go through in twenty years. And it's been difficult you know a lot of the times. We've both just thought about chucking the towel in and thinking oh well just let's start again. But then it would be for the wrong reasons at the wrong time. Because like say I'm not a different person, I'm still me but I am a different person 'cos everything about me is different. I'm so much sharper you know I'm so much more independent. I think he feels just a little bit, well like I said he feels like he's not needed anymore. He was needed so much before and I'm very independent. I've always been independent but I'm doing things off my own back more.

 

When Donna and her husband started to plan for pregnancy, Donna had to gradually come off Epilim ...

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When Donna and her husband started to plan for pregnancy, Donna had to gradually come off Epilim ...

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I always said that I wanted children, I only wanted one, and my epilepsy was not gonna stop me doing it, and I did that. It stopped me from doing so many things, and I always said it's not gonna stop me doing the most natural thing in the world, and that's being a mum. So I was looked after really well by my GP. Went, trotted off, went to the doctors, they told me that I had to come off my Epilim (sodium valproate), that's the tablet I was taking at the time, 'cos it causes spina bifida in babies. I had to wait I think it was probably a year at least before I could start trying for her, because time my contraception had come out of my system and time the Epilim had come out of my system.

 

Donna says her pregnancy was a constant worry and she had many seizures. She was well cared for...

Donna says her pregnancy was a constant worry and she had many seizures. She was well cared for...

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There was nothing nice about being pregnant at all for me cos it was just a worry, because of the epilepsy. Although my dad says he can remember when I was pregnant I had less seizures. I can't remember, but my dad said you actually had less seizures. We talked about it a few weeks ago, and he said that you did actually, so whether that's a hormone thing or, he said I actually had less seizures. Although when I was six months pregnant I fell down some stairs, had a fit, fell down some stairs. I didn't know, again I was oblivious to it all. My husband said, 'Come on, we're going to the hospital.' But she was fine anyway. She bounced out a healthy 8lbs 10. So yes she was absolutely fine, but that was quite difficult. But I did it. I was really well, I was really well looked after by you know my hospital, I had a lot of scans, you know, they was really good, I can't fault the national health service there, they really looked after me really well. So I think anybody that was thinking about having a child, it's not awful, you've just got to go and get the right help, and say, this is what I want to do, you know, then they'll guide you, well I was lucky I was you know guided in the right way, and I got all the right help.

But it was such a worry, it was such a worry, oh it was a horrible nine months, it was such a worry. I just wanted it to be over. Not the pregnancy itself, but the epilepsy with the pregnancy. Then when I fell down the stairs when I was six months pregnant that was a bit of a. but like I say she was fine, healthy. I wanted a girl cos I knew I don't want any more, and I had a girl so, that was great. So it's not all bad.

 

Donna was 'over the moon' when she had a healthy baby. She felt she missed out on a lot with her...

Donna was 'over the moon' when she had a healthy baby. She felt she missed out on a lot with her...

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I was over the moon. I didn't know, I wanted to know whether I was having a boy or a girl, like a lot of people do, but 'cos she was laid in funny positions all the way through I never knew. So she was awkward from the start. Just like her mum, and then when, when they said oh I'd had a girl I was so happy, I really was, I thought, 'Oh it's all been worth it.' You know all the worrying all the way through and falling down the stairs at six months pregnant, but it was very difficult after as well. Because I've always been, somebody who has needed my sleep and as you know you don't get sleep when you've got babies.

So getting up and down in the night was difficult. Because again because of my tablets I've always been a good sleeper, I've always been ready for bed at a reasonable time. So that was quite difficult afterwards getting up and down in the night. I mean my husband was good. For nine weeks I was that sore anyway cos of the caesarean but my husband was really good, he you know he did a lot of the getting up and down, but that was difficult as well. I mean I feel that really [daughter's name] has only, she's just turned four, and she's only really getting, just getting my full attention now.

I feel that again the epilepsy sort of took the first, the most important years of her life away from me because I couldn't be as responsible with her as what another mother could. But now I've got my chance to make that up to her, so I mean I do feel that the epilepsy's took them years away because again everything was focussed around my health and my illness. But again it can only be the better for both of us. I mean I took her, about a fortnight ago I took her on a bus on my own in town, and we had lunch in a pub. She thought it was absolutely fantastic, 'I've been to the pub dad I've had, no it was breakfast actually, and I've had breakfast with mummy', but things like that I could never do before.

Because of the tablets I'm tired. So that means I ain't got no patience. And you need patience with children. Having the epilepsy meant that I couldn't take responsibility for her, because I couldn't take responsibility for myself so how could I take responsibility for somebody else. So that was a big issue in itself, not being able to take her to the park, again it goes back just to doing the normal things that parent's should be able to do. Taking her to the park to feed the ducks, taking her to the shops, you know yeah I can do all them things now, but when she was a baby I couldn't. Not on my own. Because I would be worried. You know I'd worry about just going to. Like I say, I haven't being going to the doctor's without having a fit, you know it's just so, epilepsy is very unpredictable, you know you can be all right one minute and then you're on the floor the next. And that's where again you live your life on the knife edge, so I found it difficult to be relaxed I suppose. I'm more relaxed now. But that took a while to just be relaxed. You're gonna be okay you can walk out the door and just do normal things so like now when I do things with [daughter's name] it's great. Because I can just do them and I can just do normal things you know like taking her in town and you know taking her to, I'd be no good before taking her to the park because if I had a fit I'd be in the lake you know. And where, where would she be'So my husband did a lot really the first two three years. You know he sort of took a lot of the responsibility, because you know he didn't have epilepsy and I did.

 

At her worst, Donna had fifty complex partial seizures a month and injured herself many times.

At her worst, Donna had fifty complex partial seizures a month and injured herself many times.

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I wrote it all down in here and some months I had you know 40, 50 fits in one month. I was told I've got temporal lobe epilepsy, which is very quick, you don't get any warning as such. One minute you're alright, and the next minute I could be, if I was stood up, I'd be on the floor. I didn't know who was around me, what I was saying, what I was doing, very dangerous really I mean, I've fell against things, I've fell against windows, at one stage I was going to the doctors to pick up a prescription, the next thing I knew my husband was coming to pick me up. 'Cos they'd phoned him, and I'd fell outside the pub, which is quite funny really, 'cos they maybe just thought I was drunk, but I wasn't. I've got a big scar down my back from where I fell onto a corner unit, I was only upstairs, my husband was downstairs, and all he heard was 'clunk' and I fell right, right down, and I've got a big, big scar on my back. 

But through all the years of having it, 25 years, I never did myself any serious damage, which is good. I could've done. I always say, it might sound daft, but I always say I think somebody, something or somebody was protecting me, it's like's your body just knows, it's strange. I mean again I've never been really drunk but when you're drunk you don't feel things, when you have a fit, I didn't feel anything, didn't feel no pain, until afterwards. I come round, and it took me half an hour or so to just think, 'Where am I?' sort of thing, and then my husband, or my parents would say, 'Oh, this is what's happened, that's what's happened.'

 

Donna finds it harder to get back into work the longer she's been out of it. She's now looking...

Donna finds it harder to get back into work the longer she's been out of it. She's now looking...

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Yeah, I'm hoping to be going back to work next year. I'm looking into going back to work next year. 

You said you've had quite bad experiences with employers.

Yeah, I mean it's gonna be difficult because I'm gonna have to tell people why I haven't been employed for such a long time. I have thought about that. But I can only sort of just be upfront and say well look this is why I haven't worked for 12 years because I suffered with a long term condition, but since I've been better and I've done this that and the other. I've done several courses, I'm you know doing my voluntary work. I've got no qualifications as such, but I've got hands-on experience and this is why I've got to keep up with my voluntary work, until I know that I'm well. At the minute I know I'm not well enough to go back to work part time, but I've gotta be doing something. So it looks good for me, when I do decide to go back to work, probably next year now. Part time maybe to start off with, and then just build it up from there. Again I'm lucky that I'm still young enough to start again. I'm not over the hill yet [laughs].

No absolutely.

Not yet. I'm doing a course, at the end of this month on mental health. So I'm just sort of getting all the free education in where I can, 'cos there's plenty of adult education centres and things now. And the work that I want to do anyway, a lot of the times you do get training with it. Because care work is not something that everybody wants. You've gotta be a special person to do it I think. You've gotta be dedicated to do it, and I am. I've got, I think one of my gifts is I'm good with people. You know, again through the years of having epilepsy when I have done work it's been with disabled children, it's been in care homes, it's voluntary work I did for about a year with adults with learning difficulties. So I'm looking to go into the care sort of work, that's what I definitely want to do.

 

Donna couldn't go out or drink when she was younger because her seizures were really bad. She...

Donna couldn't go out or drink when she was younger because her seizures were really bad. She...

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The epilepsy has always been like my main, it's been the main thing in my life. It's ruled everything. You know, I never had a social life as I was growing up really, you know I never had sort of, from sort of 15 to 19 where my friends was all going out drinking and clubbing, I never did any of that, 'cos for one, it wasn't really a good idea to drink when you're on medication, it don't really go, and for two, I didn't want to be going out and having a fit when all my friends were out enjoying, enjoying themselves, I didn't want to be a burden on them. You know, I had good friends, but I just didn't want, you know I didn't want to be out in, and see again the flashing lights and the heat, I couldn't cope with any of it. Cause of it, cause of my epilepsy. Not that it particularly the flashing lights set it off, but I just didn't want to be in that enclosed environment. I was frightened of having a fit.

 

Donna has been seizure-free since her surgery. Her memory and concentration are much better and...

Donna has been seizure-free since her surgery. Her memory and concentration are much better and...

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My concentration is better, I'm getting sharper. I'm so much sharper I can retain information more, what people say to me I can remember. I can remember numbers, I could never remember things before. The information that I'm learning now each day I can remember and that's great. I can see myself the improvement, whereas people used to tell me bank numbers, or any sort of number, a phone number, I couldn't remember. I couldn't remember what I did yesterday, what I remembered yesterday with the epilepsy. Now my brain is so much sharper, that just to me shows what the epilepsy has done, through the years. It's slow, it definitely does slow your brain down, your memory, your concentration, everything. I have improved so much in a year it's unbelievable, I mean I've had the neuropsychology tests done five months after my surgery, and there was a slight improvement in all my memory functions. My numbers was better, everything was better, so that's great. So that is good. I know that the epilepsy's just slowed me down you know, but now things that my friends, things that I wanted to do when I left school, and I couldn't I'm still young enough to do.

I'm hoping to go to college at some point. I want to work with people with disabilities. I'm very good with people anyway, that's just something that comes natural to me. I've lived with a disability myself all my life, I've been working voluntary with adults with learning difficulties, and that's great, yeah. So yeah, like I say, I've got to tell people the bad bits but I've also got to tell them the good bits because you know, it really is good. I can sit here now and say yeah it's great. The twenty five years that I lived with the illness wasn't great at all, I can't really say there was anything nice about it. Epilepsy is not nice, it's like any chronic illness it just puts everything on hold.

 

Donna found it difficult to adapt to a seizure-free life. After 25 years, she felt epilepsy was a...

Donna found it difficult to adapt to a seizure-free life. After 25 years, she felt epilepsy was a...

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It [epilepsy] becomes such, it becomes such a part of me, it was me. I had it from three to the age of 26, 27, so when I lost the epilepsy I felt like I'd lost part of me. So it's like I went through a grieving process, it's very difficult to understand see. When I said about my surgery I thought I was gonna come out and I thought I would be on the top of the world and I'd be feeling great, and everything would be fine. For one I did too much too quick, I was told I should've paced myself and I didn't. And for two I just thought, 'Oh, well what am I gonna do now?' It was, it's been so strange, I went through the stage where I thought Oh, well this isn't happening, I'm gonna have a fit soon, because I'd got, my life was so used to having the epilepsy. I've struggled to sort of come to terms without it. I spoke to various people from the hospital where I had my treatment, and, they said that anybody that's had the sort of epilepsy that you've had for a lot of years does, will go through this process after the surgery. She said it's not unusual for people to' I was very, very depressed, I was really really depressed, and she said it's not unusual at all, she said you're not an unusual candidate. She said, 'I have a lot of people coming back to me,' this is the neuro psychologist, 'Coming back to me saying that they can't cope, they're tired, you know they're depressed.' 

I'm coming through that now, I'm still taking tablets for the depression but I'm coming through it. But it is all just how my life's been I think. It's the lifestyle I've led. And I didn't think I'd ever come to this stage whereas somebody would take the epilepsy away from me, I didn't think I'd ever be in this position. I mean it's great; don't get me wrong, it's great. I'm so much more independent than what I used to be, I am independent anyway, 'cos the epilepsy has made me strong, strong minded and independent. But just getting on a bus, and not having to worry about having a fit, those sort of things I appreciate more now. I can go the shops, just do the normal, I can just do the normal things, without worrying. I used to live my life on a knife edge, worrying when's it gonna come next? When's it gonna come next? You know where am I gonna be, what, am I gonna end up in the middle of the road, and like just going upstairs. My husband could be down here and I'd be upstairs and that's it. I can't walk around with somebody joined to my hip all the time. I had to have some independence. That was always quite difficult. So I had to adapt to sort of life afterwards you know, without it, which has taken me a year and I'm finally now seeing the light at the end of the tunnel.

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, 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. 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. And now I can, I mean, like I say it's all good now, but it's taken me a year to find that good.

 

Donna says surgery was 'the hardest but the best' thing she did. She advises others to pace...

Donna says surgery was 'the hardest but the best' thing she did. She advises others to pace...

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I was out of hospital within a couple of days of having it done cos I was ready to come home and everything had gone fine. And I just found it very difficult to pace myself. I've got a young daughter, you know I've got family so, I just found it difficult. Physically I thought I was okay. But I wasn't, I'd gone through a big major surgery, two year programme and then I had the surgery at the end of it. I was told just to pace myself, do a little bit of this, a little bit of that, but of course, me being me, well that's a women thing isn't it. You think you can just do everything, and I just did too much, too soon. I wanted to put right 25 years in six months. If that makes any sense.

I just wanted to do everything that I hadn't had a chance to do, straight away, that's what it was. I wanted to go out and do this, go out and do that, not thinking that of course I've got the rest of my life ahead of me. I wanted to do 25 years in six months, that's what my dad said to me. He said you can't do 25 years in six months, and that's what I wanted to do. And that's where I struggled, I was going out doing voluntary work, far too soon. I was looking after [daughter's name], looking after the house, although my husband was trying to say you know just rest, take it easy, I wouldn't. Because I needed to keep myself busy I think to keep my mind off it. To keep my mind focused off from what I'd had done. Through all that, going through all the bad, I can see the good now.

After I had my surgery I was all over the place, I didn't know whether I wanted to go to college, I was phoning up for different courses. I went and started doing my voluntary work only seven weeks after I had my surgery, which was probably far too soon. I was, doing stuff, silly obsessional things like cleaning the kitchen from top to bottom. I must've just been trying to focus away from feeling so poorly, so you know I was walking for miles and miles, and taking the dog for miles and miles, because I just felt so, so low, and I just felt so poorly continuously for weeks and weeks and weeks and weeks and weeks. Just to be, everyday I thought I'm gonna get up and I'm gonna feel better tomorrow. And I didn't.

I think that brought the depression on as well. The actual recovery from the surgery, the headaches and everything, I was trying to sort of black it out by going off and doing my voluntary work, doing my voluntary work at the charity shop, I'd started doing that. then I was coming home, like as I say I was cleaning the house top to bottom and I was taking on too much, at the time I think, you know I was trying to sort this place out. I was filling forms in to try and get a move, which was ridiculous really. Now thinking about it, I must've filled about ten council forms in. This is where all the strain came from and this is where I got all the depression because mentally I was wearing myself out, mentally and physically I was doing too much. I can see it now, but at the time I couldn't, instead of just relaxing, my brain was just so active and it was all over the place, trying to do this, trying to do that. Trying to sort this problem out, trying to sort that problem out. When really I should've been just putting my feet up and taking it easy, and saying, 'Just sit back Donna and think God what, what have you been through, just take your time.'
 
 

School was very difficult for Donna. Because of her medication, she often felt tired, couldn't...

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School was very difficult for Donna. Because of her medication, she often felt tired, couldn't...

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School was always very difficult, I always found school very difficult because of the tablets. Most of the time I was tired and drowsy, my concentration was terrible. As I got into High School, I just couldn't concentrate I really, really struggled. I mean at one point I used to lose the control of my bladder which wasn't very nice. Especially when you're fourteen, fifteen, at school, that was awful. Things were taken away from me like swimming, they wouldn't allow me to swim, at school because of my epilepsy and that. I loved swimming so that was quite difficult, 'cos I'm not a very competitive sporting person, I like to do things on my own like running, swimming, so I found that quite hard. Couldn't do trampolining and I really wanted to have a go, so I weren't very happy about that, watching all my friends jump up and down, so anyway I plodded along.

 

Donna had severe depression after brain surgery. Counselling, antidepressants and time helped her.

Donna had severe depression after brain surgery. Counselling, antidepressants and time helped her.

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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.
 
 

The Expert Patients Programme helped Donna learn more about managing chronic conditions and share...

The Expert Patients Programme helped Donna learn more about managing chronic conditions and share...

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It [Expert Patient Programme] was all about how to manage our health conditions better, it showed us different relaxation techniques, it was about meeting and talking to other people with chronic illnesses, I met again most of the people were older than me, but one of the tutors, she was only about twenty three I think and she'd had rheumatoid arthritis for about ten years. So I mean I, the only reason I sort of did the course was to go and really make myself feel better, and just to mix with other people that'd had health conditions and talk to them about my health condition, and them talk to me about their health condition so, it was a really good programme, I did get a lot out of it. I've got a manual upstairs that I can always revert back to, but again I didn't, I just feel like it's probably just a little bit too late for me now. But I went on it anyway just to see what it was, you know what people got out of it. And I've kept in contact with some of the people that I met and we met up again last week and then we're gonna meet up again in eight weeks from that so, we're gonna try and, there was eight of us I think, so we're gonna try and keep, keep in contact with each other. I mean there was one lady from, [town name] I think in Yorkshire, and I love Yorkshire people, they're great. And obviously she'd had, again various illnesses, she'd had a stroke and different things, but she's you know, she's really nice and we went to her house about eight weeks, sorry, about two, three weeks ago, and she was, then again she was talking about the, getting on a bus and that sort of thing and how people don't understand and getting on a train. I said, 'Well I do, I said, I do understand what it's like not to be able to do these sort of things and, and panic. You know she said, 'I just can't get on a train, I'm too frightened, in case I have, another stroke or something.' I said, 'That's it.' I said but I could put, sort of put my boot, put my boot on the other foot now, and say look I, you know, I know what it was like, but look I can do it now and it's great.' So I do know how she feels, and that's when she said, 'Oh well, yeah I suppose you do know.' I said, 'I do know, yeah.' I said, 'Just cos I can do it now, I can do it now, but you know all them years I couldn't do it,' so I do, so it is very good, it is a very good programme and it's nation, you know it's national, well I think I think, it's all, I think it started in America. It's all, it's worldwide now. So it's a very good programme for anyone with a chronic, a chronic condition.

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