Annabelle was diagnosed with epilepsy last year. She shares the challenges she has faced whilst studying at college, the support she has received from her lecturers and how she feels about going to university in September.
What type of seizures do you have, and how do they affect you?
I have tonic-clonic and focal aware seizures. So obviously the tonic-clonic seizures are much more impacting on your daily life.
The last one that I had was when I was crossing a busy road. And you know buses are going around about you because you’re lying on the road.
The medication is now, I think starting to control the bigger seizures, which is good and I haven’t had a tonic clonic seizure for a couple of months.
But you know, who knows when that’s next around the corner but the focal aware seizures are much easier to deal with. They don’t last very long.
So yeah, that’s my types of epilepsy and it depends what type of seizure I have and how much it affects me.
I always feel that with any of the seizures, it’s actually worse for the people that are watching or that are with you.
In particular, the tonic clonic seizures because obviously, I don’t know anything about them, but other people can see it and that’s quite a worry for other people really.
What sort of challenges have you faced whilst studying at college and managing your epilepsy as well?
So first of all, I would say that the college have been very supportive and it’s a very supportive learning environment and they’re very keen to help you and your studies.
However, there’s a limit, obviously, to what they can do.
The challenges have been having to stop driving and that’s had a huge impact on my life, so even just getting to college and back.
Also, I run a business as well, so trying to kind of just manage all that on public transport or taxis has been quite challenging.
The medication particularly, I have found quite difficult. So, this is me on my fifth medication and in amongst that I’ve had a couple of other health challenges. So, I’ve had meningitis as well and that infection.
I think infection lowers your seizure threshold, so I’ve had quite a number of seizures following the meningitis as well and trying to keep up with your studies when you are unwell.
Stopping driving, the huge life change and trying to just come to terms with that, it’s a lot when you’re then trying to obviously achieve something academically as well.
What kind of support have you received from lecturers and the college as a whole?
As I said, they’ve been really good. They’ve given me extra time to complete assessments and things like that.
I’ve still had to do them and catch up where I’ve missed the work and I’ve maybe missed an assessment; I’ve had extra time to do it.
When I’m studying normally, I am definitely finding it harder to focus having to take breaks in between when I’m studying, sometimes in an exam.
I would maybe have the opportunity to, if I said I needed to take five minutes, just to regroup, they would allow that.
The guidance tutor for my class has been amazing. Anything that I’ve needed or that I’ve just needed to even chat through without needing actual support. Just needing a conversation to help get me to the next stage, which is to university.
I’ve been saying maybe I can’t do this and feel a bit overwhelmed; they are saying you can do it, I’m here, I’m not going to let that happen. I’m going to help you all. It’s been a really good learning environment.
How do you feel going from college to university?
I think there’s always a level of anxiety going on to something new. But most of all I would say I’m quite excited.
I’m 48 and I’m going to university and I think it’s maybe a wee bit hard to say, I’m quite proud of myself for achieving this not only just achieving it because that would probably be enough to be proud of yourself for.
But achieving it, particularly in the face of the diagnosis of epilepsy, the meningitis which just knocked me off my feet, the medications, the suicide ideations and the allergies.
I think making it to this point and going to university in September in the face of all of those things in a short space of time. Yeah, I mean, I think I should be proud.
What do you feel colleges and universities can do more to support people with epilepsy?
I think my experience is that they have been very good, but they may be just some more education on what’s required when somebody has a seizure.
So generally speaking, I don’t need an ambulance unless obviously there’s been some additional injury or it’s been for a length of time having a seizure.
But I’ve had to kind of present that to my fellow students and say, look, OK, this is the situation. If this happens, can you do this? I don’t require this, so maybe it’s just some education for the lecturers or maybe a couple of people that are first aiders.
I’m doing a medical course, so some of the lecturers are nurses.
They’re currently working and they’ve been good because they actually have a medical background, but I would imagine for some of the other courses where I don’t know, maybe somebody’s doing English or drama or whatever, you know, it’s not a medical thing, just maybe a bit more information about what to what to actually do if somebody has a seizure.
But the support overall is good, and once you generally inform somebody. They’re fine. You know, they. Just want to know what to do.
If you would like to share your experiences of living with epilepsy, please email David Coates our Communications Officer at dcoates@epilepsyscotland.org.uk or call 0141 427 4911.