Having had epilepsy since the age of 11, and been on most AEDs (and had my local neurologist give up on me), the aim of this blog is to give support to those with epilepsy and to provide support to the families of people who have epilepsy. I’m now 28 and my epilepsy still isn’t fully controlled, so I think I’m in a pretty good position to say what’s good, what’s bad, and the side effects of the meds.
I kind of glossed over the fact I was a teenage girl in the paragraph above… but yes, I faced all the normal quandries of being a teen girl AND having epilepsy. As I’ve grown up, I’ve found that the problems I’ve faced have changed. Some boys were put off when I said I had epilepsy (their loss, hey?) and at university I went out drinking anyway because I didn’t realise it may affect my epilepsy. I now hardly ever drink and go to bed at half 10 most nights.
However, now the problems I’m facing are different. I have found the jobs I can do very limiting, I find interview situations harder than most as I tend to have absences in them, forget words for objects and also slur my words a little (which making getting a job even harder!), so, despite leaving schools with top grades, I do not have a permanent job. I have found some employers more supportive than others, and when I was temping, I found some agencies terrible. I’ve found it very important to have a job with an employer that understands epilepsy, provides support and is aware of my needs. I’m definitely prioritising my health after bad experiences!
I also find that I do still have social problems. Being 28, I’m at that age where some friends are still going out drinking late and others are settled down with families. Some don’t understand why I can’t go drinking late at night, but those with families do understand (and don’t ask me if I’m pregnant when I don’t drink – which is nice!).
There’s also the driving thing. I do an hour commute each way to work. Although I have a free bus pass, this is only valid after 9:30 am, which means I have to pay £24.50 a month to travel to work (it outrages me to pay that). I don’t choose not to drive. I am unable to drive due to a medical condition, so surely if I am able to work it should be valid 24/7?
Life with epilepsy IS hard, and I don’t think you can quite appreciate how hard unless you have lived with it. I usually get absences before I have a tonic clonic, but just because I have absences doesn’t mean I’ll have a tonic clonic. I can’t always tell if I have an absence, it’s only usually if I’m having a conversation. As for tonic clonics… I wake up from them and for days, every muscle will hurt. I will have the worst headache imaginable for hours. And I will go straight to sleep, no matter where I am. I will also be confused, and will not necessarily recognise anyone (which can be quite scary).
But even when I don’t have seizures, I always have the side effects of the meds and the epilepsy. I had to put ON weight for my wedding (how many brides can say that?) and come off my tablets because they were making me too thin. My memory is terrible – I forget words for things all the time and I am always having to get my husband to recall conversations. Certain meds have slurred my speech too, making me sound drunk or sleepy – this does me no favours in a professional environment. And you feel down quite a lot. But life goes on and we have to do the best with what we’ve got.
Remember: I am not an epileptic, I am just me with epilepsy.