Long term health conditions (young people)

Well, certainly having to take medication every day, every morning and every evening. And that is a big change. You know, it's not something that a normal teenager has to do. And it does make you feel a bit different. That if you have, if you go to a sleepover or if you stay at somebody's house, you know, you have to take these big tablets and nobody else does. Also the tablets had side effects and they, they made me put on a lot of weight. Which, when you're a teenage girl, is something you don't want at all. And I blew up like a balloon, you know, with a lot of weight. But that was something that was never discussed with my doctor.

They never told you or warned you that you might put on weight?

No, they never warned me it was a side effect. And I never spoke to them about it. I was really quite embarrassed about it. So it was the last thing I was going to discuss with my doctor, that, 'Hey, I'm really fat and I'm getting picked on because of it'. I know now that, you know, I should have told my doctor that it was making me unhappy and that we could have tried something else. And that's what I would do now. But as a teenager I didn't, I didn't feel like I was able to do that. So, so that affected me.

So the weight problem you had, that went on for quite a while?

Yes, that's right. Because I stayed on that treatment for a number of years. And again I didn't realise that, you know, I could have chosen a different tablet and the weight wouldn't have been an issue and, you know, I wouldn't have had to be unhappy for so many years because of it. So, yes, that went on for quite a while. And I do wish that I'd brought it up with my doctor and, you know, we could have changed the tablet and maybe not had those problems. So, yes, when, when I came off that tablet and chose another one, I lost a lot of that weight. And it really improved things. You know, I got a lot of self-esteem back. So that was a good time.

The reason I came off the tablet wasn't because of the side effects, it was just because it wasn't working. And when I was a child, often you'll see a paediatrician. So you won't see a specialist or even a neurologist. You know, you'll just see a standard paediatrician who doesn't really have the in-depth knowledge. And when I was 18, again I saw a general consultant. So somebody who didn't have the in-depth epilepsy knowledge. And so I just stayed on that treatment. They didn't really bring up the weight as an issue. And again because I felt embarrassed, I didn't bring it up either. So it was just when I found out, or when I found a specialist, they then realised that the tablet wasn't working, that there were other medications that they could try.

In which way, it wasn't working?

The aim of the tablets is to control the seizures completely. So to stop a person having seizures. And again that was something I didn't know. I didn't know that it was possible to stop these things completely. You know, I, I guess I just thought, 'People with epilepsy have seizures'. You know, none of the doctors ever said, 'We're going to get rid of these things' or, 'We want to get rid of these things completely'. So the aim of the tablets is to do that. And the medications that I were on weren't doing that. I wasn't having many seizures, I was maybe having like four a year, something like that. But it was four too many. So eventually my specialist took me off that medication and chose another one that, that made me have less seizures.

So it's improved, things have improved.

Things have improved, yes, yes.

Another issue when I was younger was the driving. Because having epilepsy, or having seizures prevents you from driving. You have to go for a year without having a seizure until you can get your licence. Now loads and loads of people with epilepsy are controlled with their medication and they do have their driving licence and they've been driving for years. But at a time that, you know, I wasn't controlled. So all of my friends were starting their driving lessons and they were passing their test and, you know, getting their cars. And, and I wasn't able to do that. So I did feel quite isolated actually. And having to rely on people, having to rely on my mum, you know, for many years. It's not nice to, to have to keep asking people to take you places. So I'd really given up hope to be honest of ever being able to drive and ever getting my epilepsy under control. But then I met my specialist and we tried a new medication and it actually stopped the seizures. And I was able to get my driving licence. And that was something that I never ever ever thought would happen.
 

I've only been a couple of times now but she does the peak flow measure and finds out where you are. And she just talks to you about your current medication. So I mean I was on Becotide and I was finding that it wasn't working as well as it had been so I was given Seretide, the purple inhalers [ha]. And I think, 'cause the first time I saw her I hadn't, I had, I did tell her that my, I didn't think my Becotide was working as well because I was taking it and I was still getting wheezy. 

And... I suppose at that point I thought it was ok to take my blue inhaler daily if I needed it. And apparently it's not because your symptoms should be more under control. And I think just because I was used to having to take it every day I thought that's what you were supposed to do. And no one had told me otherwise. So when I saw her and she said, 'Well you shouldn't be taking it daily. You should be taking it maybe when you're exercising and you know, when your triggers kick in  But you know just, you shouldn't wake up and have to take your inhaler every day' which is what I was doing at one point. So that was quite useful to talk about that and then for her to recommend a different inhaler. 

And then yeah we just talked about what my triggers were and so what I should stay away from. And then how my medication was working really.

What was her advice?

We also, we went through how to take your inhaler properly as well which I know it says on the leaflets but I hadn't, hadn't had anyone show me properly like that before. So I, I'll always remember that, the advice she gave me about how to take it properly 'cause I possibly wasn't getting the most from my, each dose anyway by the way I was taking it. 

Other advice? I think she said, she did say 'Take your inhaler an hour before you exercise rather than just before or as you're doing it because it takes that time to start working.' Yeah they were the main things that I remember.

Just because my, well I was given Becotide inhalers and I think my asthma was getting worse and so it wasn't working any more. But I just sort of, I don't know I just assumed that that meant I'd need to take my reliever more so I was just happy waking up taking my Ventolin and thinking that was the right thing to do.

Were you discussing this with your doctor or no?

No.

And this is why when I went to see the nurse this is what she talked to me about and that's when my dose changed. So I hadn't really spoken to my doctor about it. But he, he did know because I was ordering more inhalers he did know that my, I was taking it more than I used to. 

But he didn't raise the issue with you?

No, don't remember him doing, no.

And because I mean that's the thing when you're not. That's why it's useful for somebody to talk to you about it because if I hadn't seen the nurse. I mean I, you don't really know what the normal thing is and what you should be doing. So when you don't have that information you don't know whether you're doing things properly or not. So I just assumed that it was ok to be taking, waking up and taking my Ventolin because, you know I knew that I was able to take it up to six times a day. So I thought as long as I'm not overdosing I'm not doing anything wrong which I wasn't but I was just not handling it in the correct way [ha].