Charli - Interview 28
More about me...
Charli is 23 and currently at home with her son who is four. Charli had her first seizure at 16, in a GCSE exam. This was treated as an isolated incident, thought to have been caused by her having stayed at a computer for a long time. She didn't have any tests until she had two more seizures a while later. At this point Charli had an MRI and was diagnosed with epilepsy.
When she got the diagnosis, Charli says she “cried for weeks” because she felt she “wasn't normal,” anymore and felt embarrassed, also because she had had a seizure in public. Charli says in the beginning she just "didn't care" and she didn't take her epilepsy medication for a while.
Soon after being diagnosed, Charli got pregnant with her son. Her pregnancy went really well and she had no problems with epilepsy. She was "blooming" and gave birth to a healthy baby boy. Having a newborn didn't stress her out and in fact she wasn't even thinking about her epilepsy. Now Charli's son is a little older and she has talked to him about her epilepsy and explained to him "in baby terms" what happens to mummy when she has a seizure.
Charli says epilepsy has changed her in that she has become more anxious and worried, mainly about the possibility of having a seizure. Charli says for her it is "mind over matter"; the more she worries about having a seizure, more anxious she gets and then more likely she is to have seizure. She keeps herself busy thinking and doing other things which helps. She says she also avoids crowded places because they make her anxious.
Charli's mum lives abroad but she has a good family network locally to support her and great neighbours and friends. Charli has many friends with small children so they go to the park and kids' clubs together. She also enjoys her own time, keeping fit and going to the gym most days of the week. She also enjoys going out with the girls and says she just hopes she won't have another seizure in public as she finds it really embarrassing. Charli's future plans include starting a course in midwifery and helping “deliver babies for the rest of her life”!
Charli's on lamotrigine and the combined contraceptive pill. Her doctor suggested increasing the...
Charli has had anxiety attacks only after her most recent, severe seizures.
Mm-mm, no way, even after I was diagnosed with epilepsy, up until the most recent fits last year, which were, they've been like the most scary ones, the most severe ones. I was fine, I'm so confident, I'm usually really confident, outgoing, bubbly, energetic, bouncing off the walls, like, so it has affected me I mean in that way because I don't think I'm as bubbly and confident anymore as what I used to be.
So you think it's affected your confidence a bit, or a lot?
Not a lot, a bit. I mean I'm still bubbly, when I forget about it, I'm fine and get on with my normal life and being myself and being bubbly and still being like that. But I dunno I think it has, obviously it's affected me a little bit. Because I'm worrying about it, and when I'm worrying about it obviously I'm not my bubbly self yeah I suppose so. It's a shame really, so I'm just always so lovely [laughs].
[Laughs] Part of the process I'm sure as well, like you were saying that you feel like you're getting better now?
Yeah, yeah I do, but then I have certain days when I feel, a bit weirder than the other, depending on how I'm feeling, if I'm a little bit stressed out. Like I said I'm a worrier, so the little things worry me, money, bills. Like I don't get a lot of money so I have to really scrimp and save and sort of make sure everything gets paid and so I am worrying a bit about money. But I try not to let myself get stressed out.
Charli enjoyed being pregnant and felt really healthy.
My epilepsy really wasn't a big problem when I was pregnant, really, really wasn't. I didn't even think about it, I was just so happy that I was pregnant, it never really came into it, I don't think at the time when I was pregnant I was on my lamotrigine monotherapy. I wasn't taking any medication at all for my epilepsy because, well I fell pregnant in 2002 and had my son in 2003, basically after I had been diagnosed that I fell pregnant. I think with all the kafuffle of being pregnant and everything else I didn't take my medication. I was pretty bad in the beginning actually I didn't think I needed it, until I had like a couple of major seizures. But yeah it was fine, I didn't have to take any precautions, like I wasn't told to take folic acid because it wasn't really mentioned then about my epilepsy and my pregnancy, do you know what I mean.
But it wasn't really a big thing, because it had just sort of been newly diagnosed and I hadn't had the fit, a fit for ages before I fell pregnant. But like I said now if I was to get pregnant again I've been advised all different things and I'm not looking to have another baby for a little while, don't worry about that [laughs]. But yeah I didn't really think about the implications of having a child and having epilepsy, because my fits were so irregular and not very frequent. I didn't really think it'd have a major impact at all and we was fine.
No I was okay actually during my pregnancy I didn't have morning sickness, I worked up until I was about eight months pregnant in the bank still. I enjoyed being pregnant, I bloomed when I was pregnant I did it really lovely, my nails were lovely and strong, my hair, I had a good time being pregnant actually [laughs]. Yeah but it wasn't affected by my epilepsy at all, and that didn't affect my epilepsy at all so, yeah. If anything I was probably more healthy during my pregnancy, I looked better, felt better, more relaxed and everything.
Charli gets stressed and anxious about the possibility of having a seizure.
Is it constantly thinking about it?
Yeah just, just worrying about it really. Just worrying that it's gonna happen, and who's 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.
If Charli drinks more than she should she feels like a seizure is coming on.
Charli describes how she explained to her 4-year-old son what epilepsy is and how 'mummy's brain...
He's good. I just worry about him worrying about me that's just one thing that I hate the thought that I'm putting worry on my four year old son about my health it makes me feel really guilty but he's alright I'm sure he's handling it.
Charli has a freedom pass which allows her to use all public transport for free. She doesn't mind...
Charli has had a shower put in her house and explains why she doesn't want to use radiator guards.
Not really, I mean I do sort of be aware of like, I've got sharp corners sticking out, and my radiators and stuff like that but, I live alone there's only so much you can do. I mean the radiator guards and all that, you can have that put on but, I dunno, and I don't want them on [laughs].
Yeah, why not?
Yeah it, they, they're not the most attractive things are they radiator guards and the little plastic things that go on the edges of the table. Like I couldn't go that far just [laughs] because I like my house being like it is but, yeah, I mean I have tried to make safety precautions. Before I had, before I actually had the, the shower I used to get someone to come round and just wait with me while I had a bath 'cos I was so scared about maybe having a seizure in the bath 'cos obviously, you've got no chance, you'd just drown, yeah but, that's it really, as, with my house. Sometimes is, there's someone with me, like I make sure, I'll make sure that I've got someone round here like.
Charli decided to resign from her job because she was too worried that she might have a seizure...
When first diagnosed, Charli said she didn't take the diagnosis seriously. She wouldn't start her...
Do you think you just wanted to deny the whole thing?
I think so yeah, yeah, probably, I didn't wanna admit the truth. I was kind of embarrassed I suppose.