Lottie

Age at interview: 37

Brief Outline:

Lottie was hospitalised following an epileptic seizure when aged 15. She has tried 9 epilepsy medicines, none of which have worked and her suitability for surgery is being assessed. She also has diabetes type 1 and depression and has tried to commit suicide.

Background:

Lottie is married with one child aged 8. She used to work as a personal assistant but is currently unemployed due to ill health. Ethnic Background: White.

More about me...

Lottie started with absence seizures at 15 immediately before she was due to sit her A Level exams at boarding school and then progressed to tonic-clonic ones. Being away at boarding school caused problems as doctors in different locations were “somewhat reluctant to share notes.” 

“We saw numerous different consultants all over the place, all who had a completely different opinion on what it was and kind of linked the two together [epilepsy and panic attacks] and said they were the same, despite my mum’s best efforts to try and say that they were completely different.” 

Lottie was aware of the possibility of inherited high cholesterol, for which she was screened in her twenties, found to be positive, and put on more medicines. She also developed “severe depression” around this time and tried to commit suicide. She had planned to get pregnant, at which point she came off her epilepsy drugs and was found out to be diabetic as part of a routine test. After initial confusion, this was found to be “slow onset type 1 diabetes.” Having diabetes has seriously complicated her epilepsy.

Seizures have led to many accidents resulting in burns, falling down the stairs and a serious head injury that required an emergency brain operation. Following this, her seizures “increased quite dramatically” which resulted in further depressive episodes and three attempts to take her own life.

Lottie wonders, “How much of my life has been defined by having these illnesses?” She has a very poor memory as a result of the epilepsy. She spent a large proportion of last year “in a mental hospital with severe depression.” Her daughter acts as a young carer in emergencies.

Through involvement with the charity Epilepsy Action, people persuaded her to seek out an expert epilepsy consultant, although she has to travel over one hundred miles to see him. She has experienced a lack of care continuity with Community Psychiatric Nurses. Lottie feels her GP is honest with her, listens well and “does the best he can do”; making appropriate referrals when more specialised expertise is needed. 

Lottie thought it unfair that she inherited her father’s high cholesterol on top of having epilepsy.

The high cholesterol thing, although it hasn’t had an impact as such on my life, other than it’s just another drug tapped into the list, I think the, it, what felt very unfair was there was a fifty fifty chance that it would either be me or my brother, who had inherited it. My gran had it. My dad had it spectacularly. His cholesterol reading was twenty seven.

And his doctor had to do the test five times because he felt he should really be dead with a cholesterol level that high. And I think, when I did the test, I kind of already knew it was going to be me, as opposed to my brother, but it just it just felt very unfair. And I obviously don’t wish my brother any ill at all, but it kind of felt there were times when it was just, you know, I’ve got enough to deal with. Could you not just, could he not just have had it as opposed to me, you know? Why have I just got to have all these things? So yeah, I think the mentally, it is very draining and you do question a lot of the time, and it’s very difficult not to ask the questions that you know are unanswerable. And I suppose, in a way, that that’s the other thing is my husband has, when he was thirteen, had he got hit on the head with a surf board and somewhat, ironically, on the opposite side of my head, got hit on the left side of his head, had a blood clot removed. 

And for a short while had seizures, but his were explainable. He knew why he had had them because he’d had the bang on the head. Mine just appeared out of nowhere for no apparent reason, and there’s all the questions you would normally ask, generally being why? Nobody can answer and nobody will ever be able to answer and it’s very hard, if you’re having a bad day, for those questions not to continue, just keep appearing and just kind of nag at you and niggle at you, even though the kind of rational part of you knows it can’t be answered, just stop asking them, they will continually surface and just niggle at you.

Lottie refers to the invisible nature of her conditions and wonders what she might have achieved without them. Memory problems mean that she can’t recall key events in her life.

I think one of the hardest things is just constantly having to take medication to the fact that your life kind of you can’t be spontaneous, because you’ve got to suddenly think, “Ooh, we, you know, do I need to take this with me? Do I need to have this with me?” Or you can’t just kind of go off. Daft things, we, when we went on holiday last year, I think we probably spent more time trying to sort out travel insurance, letters confirming that I did need needles, the insulin, the drugs and all of that and it’s just, it weighs you down. You kind of think, I just, it would just be so nice just to walk out of the door and just go and do whatever.

And you feel very, very tired and I think it becomes, I mean currently I’m not able to work. I was due to start a new job last year and they went through the contact contract, when they found out of my, the kind of extent, I suppose, of my illnesses and to a degree, there was a discrimination but, unfortunately, at the time, I was not in the right state of mind or health to pursue it any further. But I think the problem, when you have illnesses like diabetes, like epilepsy, that because they’re not clearly visible on a day to day basis, there is this kind of people looking at you as if to say, “Well, why aren’t you working? Why aren’t you doing this? Why aren’t you doing that?” And it does become slightly frustrating that you think, “Well, actually, I have got this to contend with and, you know, at any moment I could just keel over.” And it does become very frustrating that you feel you have to justify yourself all the time. And it does define, I suppose, especially having had the epilepsy since I was mid-teens, you question sometimes what would I have done if I hadn’t have had this?

What would, where would I be? Would, you know, what could I have done with my life had this not been there?  How much of my life has been defined by having these illnesses? And it’s, you know, I pick up my prescriptions now and there’s just this huge great big bag of pills and you just, it gets, it can be very hard and you think, “Do you know what, I just don’t want to take them.” I’ve got to take them but it would just be so nice not to, not to have to remember. And that’s another problem that comes with the epilepsy, is memory. And my epilepsy.

Is centred on the front temporal lobe, which is to do with mood and memory. My memory is appalling. I have to have reminders everywhere, notes everywhere, I can never remember people’s names. There’s an awful lot, my wedding day, for example, is now becoming remembered only purely by the photographs. I don’t actually remember it, and I suppose it gets highlighted how bad my memory is, because my husband sucks up information and can remember everything from what he was wearing on our first date, which I have absolutely no recollection of. I’ve got about three years at college where I don’t remember at all. So it’s just impacted and you do sit and wonder how much of you is defined by the conditions and not you as a person, and it becomes very frustrating. 

Lottie talks about having a succession of different Community Psychiatric Nurses (CPN) of variable quality. Her latest one is very good.

The help that I have had in the last eighteen months to two years, has been great. I can’t fault it really other than, and this I think is happening across the NHS as a broad, in my particular area I wish they would stop rearranging everybody and changing the areas in which CPNs [Community Psychiatric Nurses] work. Because you form a relationship with a CPN and they do become a friend. None of none of the ones I’ve been with have crossed any boundaries but they’ve be, you form that relationship and you start to trust that person and be able to talk to them and open up to them and then, all of a sudden, they’re moved and you’ve got to start again. 

That is my only criticism of it. I had a CPN that, the first CPN I ever was allocated was, she never told me what her job role was. She continually, she turned up for every single meeting we had, she was always about half an hour late. When I was admitted into hospital I said that I had no idea what she was supposed to be doing and what, why she was there. They then changed her and I had a really lovely chap, who I was forming a really good relationship with. They then changed, moved everybody around. I was given a new one, who thankfully has stuck with me. She did warn me though that, potentially, by the end of this year, she could have been moved onto a different position but they were still waiting to hear about that. But she had been, she’s been very good.

Lottie finds managing medicines for her conditions has reduced spontaneity in her life. She wonders what life what would be like if she were not weighed down in this way.

I think one of the hardest things is just constantly having to take medication to the fact that your life kind of you can’t be spontaneous, because you’ve got to suddenly think, “Ooh, we, you know, do I need to take this with me? Do I need to have this with me?” Or you can’t just kind of go off. Daft things, we, when we went on holiday last year, I think we probably spent more time trying to sort out travel insurance, letters confirming that I did need needles, the insulin, the drugs and all of that and it’s just, it weighs you down. You kind of think, I just, it would just be so nice just to walk out of the door and just go and do whatever.

Lottie feels that the new generation of doctors are better at listening to patients’ concerns about side effects. Having conducted her own research she feels better able to question her doctors about side effects.

I appreciate I’m asking you lots of questions [laughs].

No, I think quality of life is starting to slowly, especially in, this is going to make me sound like a right old fart, in the newer generation of doctors. I think they are appreciating that sometimes it’s better or that patients are allowed to have the choice.

And, when you go and you say, “You’ve put me on this new drug and I feel like absolutely rubbish.” They will listen and talk to you. Still some of the old school are like, “Well, just keep, you know, bashing on it. We need, you need to have been on it for at least x number of months before we can make a judgement.” 

And that can be frustrating. But again, I think now that with the sort of research I’ve done, I will question why and will say, “I’m not, I’m not taking this because it’s not making me feel good.”

Because, at the end of the day, nobody knows what’s really the effects of these drugs for a lot of them, the long term effect, and I think people should be allowed the right to question why and what it is they’re taking.

Lottie’s epilepsy has a bigger impact on her life than diabetes does because she can control the diabetes but not her epilepsy.

And in terms of your conditions, how do you decide what to do first? So I mean if you had to make a decision about what to address first or something like that, how would you go about that and what would take priority?

I think, do you mean with regards sort of because I mean if my epilepsy at the moment, is my priority to try and get under control.

Has more of an impact currently on my life and I suppose because I, it’s something I can’t control. The diabetes I know is controllable and I know what the consequences are if I don’t look after myself.

So it’s, at the moment anyway, because it’s not a sort of, it’s not complicated in that I do just take the same amount of insulin every morning and every night, and I take the metformin every morning and every night, it’s I can control, as I say, at the moment, I can control it and it’s stable. The epilepsy, you know, if somebody was to grant me one wish, it’s just that they could take away so at the moment, that is my priority.

And that’s, I suppose when I take the insulin and when I take the metformin, I know that it’s doing something, so it’s.

I think the difficulty is, I take the tablets for the epilepsy and I just think is it is it making any difference whatsoever, or am I just shoving more drugs into my body for no apparent reason?

Lottie feels that having to take medication everywhere has removed spontaneity from her life. Her family are on constant alert around her risk of seizures, which causes anxieties.

I think one of the hardest things is just constantly having to take medication to the fact that your life kind of you can’t be spontaneous, because you’ve got to suddenly think, “Ooh, we, you know, do I need to take this with me? Do I need to have this with me?” Or you can’t just kind of go off. Daft things, we, when we went on holiday last year, I think we probably spent more time trying to sort out travel insurance, letters confirming that I did need needles, the insulin, the drugs and all of that and it’s just, it weighs you down. You kind of think, I just, it would just be so nice just to walk out of the door and just go and do whatever.

And get some sort of calm because I think the problem is now, I mean, I can be in the kitchen making a cup of tea and if I drop something, you know, my daughter is in there like a shot, my husband is in there like a shot and everybody, it’s not just, it doesn’t just affect me.

You know, my husband says he’s on a knife edge every time the phone rings, if his mobile goes off he says his heart start racing, you know. I dropped something or bumped into something doing the hoovering and my daughter has an absolutely panic attack. So it’s it isn’t it isn’t it isn’t just about me, it’s the condition kind of, up until three years ago, I’d never seen a seizure, both my husband, my daughter, my mum, my dad, brother, you know, and numerous friends had all witnessed them and I’d never, ever seen one. And it wasn’t until I went to into the epilepsy hospital for the ambulatory EEG, I saw my first seizure.

And, you know, like, whilst it’s me that has the seizures, I have no recollection of them and I, as soon as it’s over, I need to sleep and I will sleep for a day.

Lottie was inspired by a member of Epilepsy Action to be more questioning of consultants and assertive in her demands for specialist epilepsy input.

My neurologist, I’ve felt, has always been fairly dismissive. For many, many years, I have four types of epilepsy. I have full tonic-clonic seizures.

I have absence seizures, I have auras, I also have non-epileptic attack disorder. He has always been fairly dismissive and always believed that my seizures were non-epileptic and brought on by psychological problems. He then changed his mind and thought that some of the them were epileptic, some of them non-epileptic but has, I suppose, what, one of the one of the chaps that I suppose I suppose has got me spurred on to kind of constantly question and badger consultants has been from the from the Epilepsy Action group.

He’s, I suppose I’ve been trusting of what he’s got to say because he lost a son to epilepsy, and his youngest has epilepsy and he also works for Epilepsy Action, so he does actually know what he’s talking about. And that’s kind of, you know, he’s, and it was him that got me kind of actually questioning and be able to feel that I was allowed to question what my consultant was doing. And that’s only really happened in the last couple of years.

I think, up until then, there, I was very much of the belief that these, that you didn’t question, you didn’t ask questions, you just did as you were told, that they knew what they were talking about, so just go with what they were saying and do what they told you to do. Only recently have I felt I was able to actually question why and the consultant that I had been referred to, the epilepsy specialist, at one point, because I was, I was completely unaware that brain surgery was even an option.

Lottie asks health workers to speak clearly and slowly without using long medical words. She wants doctors to be honest with patients and also consider their quality of life.

If you could give any messages to medical professionals about how they could improve your care or care for somebody else who might be living with your conditions, for example, what might you say? What might you tell them?

Listen. Talk very clearly, very slowly, don’t use great long medical terminology that somebody is not going to understand. Consider somebody’s quality of life as opposed to just simply curing the problem. Be honest and, regardless of whether it means you’ve got to fill out umpteen forms, if there is specialist care available to that patient, refer them to it… and don’t just use that person as a drug testing bay.

Lottie advises people to get advice from specialist web sites and be open in asking questions and expressing feelings about treatment to doctors.

If I could ask you now if you have any messages for any other people who might be living with more than one condition, what advice might you give to them, what messages?

Do some research, use the internet, obviously, be wary of which sites you’re on. You know, use Epilepsy Action, the Epilepsy Society websites for information. Don’t be afraid to say to your consultant or to your GP how you’re feeling. Don’t be afraid just to ask questions and if you’re not happy with what is being done, don’t be afraid to tell them that.

And keep pushing and keep asking until you get the answers that you’re happy with.

At the end of the day, it’s your body and your life. You are in control, control is not quite the right word because you’re not, but you do, you have a say, you are entitled to have a say in in what treatments and to be happy about those treatments.