Epilepsy Week 2k16

So, it’s Epilepsy Week once again, and you know what that means! Time for some good old-fashioned awareness! 

I try not to repeat myself too much with this blog. I mean, I know I generally repeat myself anyway, but, along with my growing addictions to Twitter and Tumblr, this is one of the reasons I hold back from posting here all that often. I want to have something to say. To make a statement, rather than babble at a screen so often that the meaning of what I’m writing gets lost.

And I feel this is one of the problems with raising awareness. I see it with so many things. I want people to know, and to understand, but how do you do that? Awareness runs a risk of being: “Hey, there’s this thing called epilepsy, and it’s kind of a pain so it’d be great if you could all just, well, know about it, okay?”

…I mean, I’d rather that people know about it than not know, but ultimately, just knowing that it exists doesn’t really achieve much. And to educate people on what epilepsy actually is, and what impact it has? How do you do that in short enough chunks that people don’t get bored?

I recorded a ten-minute interview about epilepsy this morning, which will broadcast on BBC Radio Kent this week. Ten minutes, to talk and explain. Ten minutes of awareness. At one point, I was asked what impact it has had on my life.

How do you answer that question? Where do you even begin?

The truth is, I don’t know. I didn’t then, and I still don’t, but the best I can do is to start by saying I have had epilepsy my whole adult life, so I really don’t have a “before” and “after” to hold up and point at saying: “There. There’s the difference epilepsy made.”

30 days' worth of anti-convulsants in one not-so-convenient box

Let’s be honest though, taking two of these a day is part of it.

Sometimes I look back at my life, and I wonder to myself what it would have been like if I hadn’t developed epilepsy. Because, there’s no doubt in my mind that things would have played out very differently.

If I had never developed epilepsy, I would have stayed working full-time, and plodded along with my books alongside that. Maybe I’d have finished something by now, maybe I wouldn’t.

If I had never developed epilepsy, I would have kept my driving license, and done all my writing sessions up at Bluewater, meaning I would never have met my ex-husband, and my children wouldn’t be here.

If I had never developed epilepsy, I would have been an independent woman in my twenties, in full control of her life and with plenty to be confident about. I wouldn’t have had the twin bombs of losing my mobility and losing my ability to be out and about and feel safe dropped on me at the age of 18.

If I had never developed epilepsy, there’s a whole different life which would have rolled out in front of me, ripe with its own opportunities and pitfalls. Would it have been better? I don’t know. I never got to live that life. I never got to see where it would lead me. 

Yes. The perks of epilepsy for me include "an excuse for wearing awesome wigs"

I think it’s fair to say it would have featured fewer purple wigs though, which would have been a shame.

Now, I’m not in any way bitter about how things played out, for the most part. While I have my regrets (who doesn’t?) I have a lot to be happy about in fact. Some things just can’t be helped or predicted, and epilepsy is one of them. But you know, I don’t think that’s really what the question was about. I don’t think it meant “how has epilepsy changed your life?” so much as “how has society’s way of dealing with epilepsy changed your life?”

Because I’ll be honest, on a day-to-day basis, when left to my own devices I’m lucky enough that sometimes I forget I have epilepsy at all. Even on days when I have a seizure, when it’s all over and I’ve dusted myself off, I just get on with things. I’m so used to it at this point that during NaNo, I keeled over amid a sprint, and then got back up and started writing again where I’d left off halfway through the next sprint.

The biggest problems epilepsy has caused haven’t been because of the seizures themselves – they’ve been because of the people and structures in place around me.

When I started having seizures, several of my then-colleagues went out of their way to avoid me in case they had to “deal with it”. Others went so far as to accuse me of faking, because they didn’t know epilepsy can start out of the blue later in life.

I also lost my ability to drive, and there was no sufficient public transport in place to get me to my place of work. I had to leave my job at the time because my commute was as long as my shift. Travelling anywhere is fraught with expense and inconvenience and severely limited my independence.

Then, too, I became duty-bound to inform potential employers about my condition – at first because mandatory health questionnaires were still a thing, and then because if you want accommodations such as flexible working to be made for you, you have to explain why. It’s quite astonishing how many people can’t make those accommodations, or turn out to be looking for someone “with more experience” when you tell them this. Small wonder that a majority of people with epilepsy would rather conceal it from their employers if possible. (I didn’t have that option because my seizures were so frequent that there was no use hiding it, but you can bet I would have kept quiet if they were under control.)

I worry about having seizures while I’m out, not so much because I might injure myself – although I have done in the past – but because it’s an absolute lottery as to how the people around me will react. Is someone going to freak out and try to pin me down, causing me to spasm and hit my head? (Check. A well-meaning PCSO did that one a couple of years back.) Or will I get the well-meaning person who is determined to try and call an ambulance even if I have someone with me who explains that it isn’t necessary? (Check. People who know me well have had to insist that I’m fine on multiple occasions.) Will I get worried stares and parents hurrying their children away from me? (Also check. The irony here is that of everyone I’ve met over the years, children really do panic the least. They haven’t learnt to be scared of it yet, so generally they take it in their stride.)

Will people I have known for years suddenly freak out and not want to be around me any more? It’s happened before, and there’s a good chance it will happen again. I’m upfront about my condition because I’d rather not have people suddenly reveal their true colours further down the line, but how people say they feel, and how they turn out to feel when put to the test are two different things, sometimes.

And finally, just getting a diagnosis in the first place took two years. Two whole years of my life without knowing what was wrong with me, because my GP at the time took one look at my age and assumed I was just having panic attacks. Because the person responsible for my health decided that the results of a blood test ruled out the need to conduct a full investigation into the fact I was having seizures, and I knew so little about epilepsy and how it presents that I didn’t even question it.

When I look back, if there was one thing I could change about everything, it wouldn’t necessarily be to not have had epilepsy. It’s a bugger, sure, and I know my opinion would be different if I were having a seizure right now – they’re the exact opposite of fun, and they’re responsible for most of the bruises and minor injuries I’ve had in the last ten years.

But epilepsy itself is something I can live with. It’s something I do live with, and I’m so used to it now that I’m not really sure how I would feel if someone told me they could wave a wand and scrub it out of my life.

Frankly, if I were given the choice between not having had epilepsy, and the world just getting on and not freaking out so much that I (and millions of other people) do, it wouldn’t even be a difficult decision.

For good or ill, epilepsy is a part of my life. And it’s a part of the lives of people who know me. And it sucks, and I rail against it at times, but the biggest problem is not the seizures. When I’m at home, or around family, I have seizures and really it’s no big deal. A nuisance, sure, we’re all used to it by now. We get on with it. The problem is that so many people don’t seem to know what to do about it. So many people freak out and assume the worst, or write people off before getting to know them based on one word. And changing that doesn’t require a magic wand.

We just need some awareness.

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Epilepsy Week!

Yep, Epilepsy week is now underway – what, you hadn’t heard? Yes, it is one of the slightly less well advertised awareness weeks. Still, here it is, and the underlying theme this year is information.

Well, although I haven’t exactly done my bit and absolved myself, that is at least a small contribution to the cause.

You know, I did appear in the local paper once for Epilepsy week a few years ago. The theme that year was employment, and I was slightly downplaying the workplace ostracism I was on the receiving end of, seeing as it was colleagues and not the management, and I didn’t want to lose my job.

As far as relevant epilepsy information goes, I think I’ve already covered a few of the basic points, so I wanted to use what remaining energy I have to go into specifics about treatment and diagnosis.

In order to get a diagnosis of epilepsy, you need an appointment with a Neurologist. Now, an epilepsy nurse (which I am lucky to have access to – not everyone does) once told me that here in the UK there is a drastic shortage of Neurologists; it’s too broad a field, requiring too many differing specialisations. It’s why you get really long waiting lists, and many of them work privately too. When you eventually reach your neurologist, s/he will probably refer you for an EEG – another long wait to get to one of the fewer locations where EEG tests can be carried out. For me, this meant a three month wait. Then you have to wait for the results to be analysed. Remember that epilepsy can only be directly identified if you have a seizure while strapped to the machine, so a lot of diagnosis has to be based on patient history as well. (I was “lucky” and has some spike and wave activity picked up on during my initial test.)

This means follow up appointments with the neurologist, and, where available, a forwarding to the Epilepsy nurse, who won’t also be dealing with head pain, tumours, strokes, parkinsons – all the other things that Neurology covers as well as epilepsy. For this reason, the chances of having a Neurologist who has a real interest in epilepsy are smaller than you think. Mine have tended to specialise in pain and migraines. My last neurologist (currently off sick which means I haven’t seen him in 18 months) didn’t really seem to know that much about the subject at all.

Anyway. Diagnosis. After you get a diagnosis, the long, drawn-out process of treatment begins. If you’re lucky, you’ll get on with the first medication they put you on, and the dose will be tinkered until your seizures dramatically reduce in frequency or halt altogether. If your epilepsy relates to brain trauma (I had an MRI as well as an EEG because seizures can also be symptoms of tumours) then surgery might be an option.

However, not everyone has such a simple solution. I’m currently taking my second type of medication, as I reacted badly to my first, my seizures still occur as frequently as daily (last one this morning; I’ve been going through a cluster), and I consider myself not badly off. Some people go through seemingly all the types of medication, and the side effects from some of them are really not great. In fact, on the leaflet, most anti-epileptic-drugs will warn you that side effects can include convulsions. The fact that this is an improvement for some people should say quite enough about epilepsy as a whole that I can safely sign off for now.

And again, Happy Epilepsy Week! Happy Information!