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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In Dependence

If there is one thing about me that close family and friends can affirm, it is that I am stubborn to the point of bloody-mindedness at times. We’re not just talking a little bit stubborn, we’re talking full on, cut-your-nose-off-to-spite-your-face levels of the stuff.

And one of the things I am stubborn about is not needing help.

Of course, there’s no escaping the fact that over the course of my life I have needed a lot of help, in a lot of different ways, but then, that’s one of the reasons I hate it. Because I am someone who hates relying on other people, who hates to be incapable of doing things.

And yet, here I am, edging out of the mid-twenties and into the late, and I still, regularly, am utterly incapable of doing some things for myself.

Driving. There’s one. I had my lovely pink license for all of ten months before it was taken away again with the promise that I could have it back if I was good and stopped having seizures. Well, here I am, eight years later and in that time the longest I’ve gone without a fit is one month. It was probably a February.

Baths are another one. Seems kinda silly perhaps, but if I want to have a bath, I need someone else around, to check on me. As a result, in the last year I have had one bath, and that was me taking a risk. In my flat there is only a shower, to avoid temptation.

Cooking, too, is an area in which I sometimes come unstuck. If a seizure strikes at 4pm the oven doesn’t even go one, and one of the emergency ready meals in my freezer acts as stand-in. I’ve thrown away unopened packets of meat because they went off the day after I had planned to eat them and on that day I was unable to cook them. Likewise, there’s always at least one onion in the bag when it gets slung out, because I buy as though I am capable of cooking them more often than I actually manage.

The elephant in the room of course, is what I turn into while I am having a seizure. Perhaps surprisingly, given the post history of this blog, it’s not something I talk about a lot on a day-to-day basis.  When I do, it tends towards evasion and sidestepping. “Oh, I manage,” or “The children are really good about it actually,” or “I just got used to it really.” We make do. We manage because we have to. I don’t need help.

Except, when the seizures start, when my knees buckle beneath me and I fall down, pretty much the only ability I retain is to more or less keep myself from spilling out of my clothes. (Seriously, the number one thought and motivation if I have a seizure in public is “I will not let anyone see my bra”. Any control I keep over my arms and legs gets spent on that. It mostly works.)
There is no walking, there is no talking. There isn’t always seeing. I am fully dependent on those around me to keep me safe, to protect me – usually from myself. It doesn’t matter that I am a fiercely stubborn person, the kind of person who will carry shopping so heavy that it wrenches my shoulders and refuse to let anyone help me. That I will sit and struggle with something alone rather than admit that I maybe don’t know what I’m doing and need advice. When I have a seizure, any and all agency is stripped away.
It would be poetic, perhaps, to say that my stubborn insistence on doing things myself came about as a result of that dependence. I mean, it would also be a lie, but it would be the kind which sounds good. In all honesty though, I am the student who rubbed out the pencil notes in her English GCSE set texts that had been left there by previous year groups, because I hadn’t written them, so using them would be cheating.  Where other people work together to solve problems, I hide myself away and refuse to talk about them until I have worked it out by myself, usually meaning that it takes me ten times longer.
This, then, is the true cost of epilepsy, of seizures. I don’t count it in bruises, or in hours lost (although they would also give a fairly impressive tally). I’ll talk all day about the physical toll with no worries in the world. I can handle that. I can fall down, and get up again and dust myself off and have a bit of a laugh. It’s an inconvenience, certainly. It bloody well hurts sometimes, too.
But a cost isn’t something you joke about. It isn’t the running gag. It’s the thing you hold close to your heart, safe from the sight of others, and also, incidentally, right where it can sit and sear through your emotional defences.  Epilepsy means something different to everyone. And for me, at its core, it means depencence. It means, on some level, I rely on other people to live, and there’s a good chance I always will. That’s the cost. I carry it with me everywhere. The knowledge is a ball of fire, and it burns.

Farewell, Brown Envelope…

That’s that then. On Friday I posted off my last DLA renewal. Here’s hoping, eh?

It took me the better part of a week and cost me about six or seven seizures, not counting the one I had on the way back from posting the damn thing. That last one turned a five minute walk into almost two hours, and cost me a few pounds in impulse purchases made when I wasn’t fully there. Having a seizure is like being drunk. You’re not fully in control of your body, even when you can walk and talk. And that side of things can last for a good hour or so either side.

In either case, Friday was a write off for me. I came home and I was out of it for most of the remainder. Had a nightmare that night as well. I guess I can’t prove causality on that one, but it’s an interesting coincidence.

I had a fairly large seizure yesterday too, and another this morning. Yesterday’s involved falling off my computer chair and landing head first on the floor. I jarred my left knee, and caught my right foot on one of the chair’s wheely-feet. Both still hurt this morning, along with various other ouches. And then in this morning’s seizure I’ve jarred my left shoulder.

For such a tiny mark, my foot still hurts
one heck of a lot 

In essence, everything hurts, to a greater or lesser degree.

Is this my life anyway? Well, kinda. But the severity of the seizures and how close together they are (three “big ‘uns” in three consecutive days, plus auras on the side) is striking. And that’s *after* the form sat on my worktop for three days, complete and envelope’d, just waiting until I had a chance to post it.

It was demeaning, and horrifying, to list in detail all the things I can’t do. All the dangers I can pose to myself and to O&M. All the measures I put in place to protect my family seem so frail at times. I can “manage” (at the cost of regularly injuring myself), but I take for granted having that extra money there to buy takeaway when it’s not safe for me to cook and I’ve already used my “emergency ready meal” from the freezer. Or if I have no food because I couldn’t get out to buy it.

I try to cover up the fact that there are times I will lie on the floor in the kitchen and my children will come and stand watching me for a minute before they get bored and go and play. I downplay it to friends: “Oh, I’m fine; the children are as good as gold, they know what to do.”

I don’t think they really know what to do at all. It’s normal for them, they aren’t scared. But they do poke me, or climb on me, or fail to realise I’m having a seizure. They tell me to get up, ask me why I’m lying on the floor. (Sometimes they get rather cross that I won’t fetch them drinks etc.)

I gloss over those aspects on a day-to-day basis. One of the other mums has authority to collect my son from school if I don’t turn up, so seizures at pick-up time can be resolved, but other than that I do all I can to not make concessions. I’m a fighter. Well. You have to be, and I’m lucky enough to come from a family of women who are stubborn as all hell anyway. I still hold that faint hope somewhere that one day I’ll get my driving license back, and if that’s not a faint hope in reality, I don’t know what else is.

I’m a writer, I make up worlds, so my most common coping mechanism is to pretend there’s nothing wrong with me all the time I can. I take risks. Last week I went to London for the evening. I spent the next day exhausted and had seizures as a result, but at least I had my fun night out.

And then, there I was, confronted with that God-forsaken form and an instruction to list, in detail, all the things I can’t do. All the inhibitions on my life, all the ways that epilepsy gives me the finger on a regular basis. There’s quite a few. Of the many sections, I think there were four or five, maybe six, that I could leave blank. I probably could have said more. I certainly would have said more, had I lots of consultation notes to hand in, but as it happens there’s no access to specialist support here, so I don’t have any. I did at least get to point that one out.

And now the wait. Fingers crossed I “pass”, eh? Because I still need that DLA. Whether I meet the increasingly stringent criteria or not won’t change the fact that most days, the longest I spend out of the house is an hour. In term time. Taking my son to school and picking him up.

And now that M is 3, I somehow have to start volunteering when term starts. Good old ESA, tailor-made to stretch me to the limit. Let’s just hope it doesn’t make my seizures worse, eh? Maybe double up on those crossed fingers. I might need the extra luck.

In the Way

I often feel awkward when I know I am going to have a seizure. On the one hand, it’s better by far than dropping in the middle of a group of people and having to deal with the possibility I’ve been flashing people while thrashing about (yes, the convulsive seizures have come back – I still don’t get to see anyone until September 24th though). On the other hand, usually what happens is that W tells me to go and lie down while I still can, and I stagger up the stairs and then lie on my bed feeling sheepish, sheepish, and then just a bit more sheepish before the seizure kicks in and I get a bit preoccupied. the biggest emotion I have on coming out of a seizure is usually embarrassment.

This gets worse when my aura deviates from the more conventional “spaced” form. So, for example, yesterday, when I was holding M and suddenly got a fit of the giggles which I couldn’t explain. It didn’t stop, and between chuckles I told W that it was a bit unusual, whereupon I gave M back and laughed my way up the stairs. I honestly felt fine, apart from everything being hilarious, but obviously I wasn’t. People don’t just randomly start feeling like they want to chuckle at everything for no good reason.

I made it to the bed, and lay there, sniggering for a minute or two, before I found myself waving my legs and arms in the air, like I was riding an imaginary bicycle. A small part of my brain was working well enough to acknowledge that yes, this was a deeply peculiar thing to do, but by then I could feel myself sinking away into that sort of third-person view I have during a seizure, where I can see or hear what’s going on (depending on whether my eyes are open or not), but am not really in charge of it. It got a bit blurry from there, but when I came round, I then had to go back downstairs, knowing full well I had been acting like an utter prat when I left. Obviously I know W understands, but I still feel incredibly self-conscious. I don’t like losing control of things, and I don’t like embarrassing myself. In fact, I’ve had to work very hard over the last few years to get past what was essentially a phobia about people and their opinions of me. I used to work myself into a frenzy at the thought I might commit a faux pas, and people I cared about would think less of me, so you can imagine how it felt when  I started having shaking fits and some of my co-workers thought I was making it up.

I have mostly overcome that now, but the last of it lingers as a nagging fear that I am simply in the way when I have a seizure, and that people are just cross with me for it. No matter how many times other people tell me it isn’t my fault, I can’t quite let go of the nagging fear that people around me are, one day, going to tell me that maybe I should just sit over in the corner where I won’t bother anyone any more. I have grown complacent about the fits themselves, and the occasional bump on the head doesn’t worry me too much, but what is arguably a trivial fallout from having seizures is, for me, one of the worst aspects of my health; I still fear people judging me for something I am unaware of or unable to control.

6 Bad Places to Have a Seizure

Obviously, there isn’t really a “good” place to have a seizure, but some are definitely worse than others. I don’t think it is shouted from the rooftops enough just how vulnerable people with uncontrolled epilepsy can be at times, and one of the biggest dangers is having a seizure in a hazardous or unpleasant place. Even some seemingly innocuous locations can have hidden hazards, so I have provided a few of my own bad places to give a flavour. The fact that this fits into a handy “top X of Y” trendwagon is just a happy coincidence.

Please feel free to add any of your own experiences, direct or indirect, in the comments section.

1) An armchair. I know, this one sounds particularly silly, but the fact is, when you have no control over your limbs and you’re thrashing around a bit, an armchair really isn’t the haven you might think. Just a short while before I wrote this, I had a seizure in an armchair and not only banged my head quite hard on the arm, but then managed to throw myself out onto the floor and hit my head on that, too. Not great.

2) At the shops. First of all, shop floors are cold. They are not at all comfortable. Secondly, if you are at the shops, the chances are that you have shopping, either paid for or awaiting payment, which, even if you don’t injure yourself on shelves or other common hazards found in shops, gets complicated when a Concerned Citizen calls an ambulance*.

3) At work. Aside from the potential fallout from your employers (not such a risk if you work for a large or reputable company, but it does still happen sometimes), seizures at work can be really dangerous. In an office, there are desks and electrical items to get tangled with, not to mention swivel chairs, and in non-office work environments, it can get even worse. I used to work in retail and had many a seizure out in the stockroom, surrounded by big, heavy boxes and merchandising displays. Not fun, and that’s leaving aside the other, more invisible problem which is co-workers. Again, this is not a universal problem, but I encountered a lot of negative reactions from colleagues when I started having seizures. People basically didn’t want to be anywhere near me, because that made them responsible for me if I had a fit. It made life, even in between seizures, very uncomfortable indeed. Few people look at you the same way when they’ve seen you thrashing around on the floor with your eyes rolling all over the show.

4) The Bathroom. The most apparent danger here is the bath, and general advice for people with epilepsy is either to have showers instead, (preferably) or to constantly make some sort of noise while in the bath to let people know you are okay. Locking the bathroom door is an obvious no. I haven’t had a seizure in the bath, but I have had one in the shower, and I can tell you it’s not a great experience. I’ve also had seizures on the bathroom floor, and that too is a cold, unfriendly place. Any water on the floor can be a slipping risk, too.

5) The Kitchen. I shouldn’t have to go into too much detail on this one. Kitchens=danger, especially if you have a habit of keeling over or suddenly acting very erratically. Knives and ovens are the obvious hazards, but to be honest, most of the things you find in an ordinary kitchen can be dangerous if you have a seizure. Cupboard handles, crockery, cutlery, pots and pans, all can be fallen on or over. I used to work with ovens, and obviously, that job is now completely out of the question.

6) Stairs. I have had seizures on flights of stairs, and in-between flights of stairs. The fact that I can honestly tell you they are some of the most frightening seizures I’v had is actually a good thing. The thread of consciousness I kept onto stopped me falling down the dratted things. One of them, I locked up going down, and clung to the balustrade for all I was worth. I think I had to be pried off, before I clung to it so hard I fell over the side. The other time, the time I was on the landing, in-between two flights of stairs, I managed to keep pushing myself back from the edge, despite getting ever nearer about three or four times.

So as to not end on a note of doom and gloom, and me nearly falling down concrete stairs, I thought I would point out that while these places are dangerous for people at times, and there are precious few “good” places to have a seizure (I can list “in the middle of a big bed”, “during a long-awaited EEG” and “during the flipping ATOS interview” off the top of my head and then pretty much run out), when you’ve had epilepsy a while, you either get used to working out when a seizure is imminent, or you have a carer who can tell you/keep you safe, or a combination of the two. There are lots of strategies for minimising risks, but while you can (mostly) make your own home pretty safe, being safe when you are out and about often relies on other people, and what they know. If the people around you know what to do, the danger becomes a heck of a lot less.

*My position on people calling an ambulance is, as I have explained before, a complicated one. People with epilepsy often get frustrated with ambulances being called while they are having a seizure, since most of the time there is nothing that the paramedics can actually do, and it costs a lot of time and money being sent to A&E. On the other hand: I would ALWAYS recommend calling an ambulance if you encounter someone having what looks like a seizure and you either: a) can’t find a card/medical jewellery saying they have epilepsy; b) think the seizure has gone on for more than 5 minutes, or they have had a second seizure without recovering from the first; c) think they have injured themselves.

Who’s there?

I have often said that I do not lose consciousness when I have a seizure. I say this because I can remember them afterwards – some clearly, some less so – and because I can respond to things while they are happening, occasionally by talking, but mostly by flexing my fingers a little. Once I even managed to stop myself falling down a flight of stairs.

But, as much as I often find myself thinking “Hello! I’m still here,” when people talk over me as I lie prostrate on the floor (usually this is paramedics or the general public. Family and friends know the drill by now it seems), I sometimes wonder who “I” really am at these times. When I am having a seizure, my awareness of what’s going on is often really skewed, and my priorities and behaviour is so different that I could almost be someone else entirely.

I’ve caught myself thinking, before now: “It’s all in your head. If you weren’t such a failure you’d brush yourself down and move. MOVE, damn it, stop lying there hardly breathing and scaring people.” I’ve dared myself to move an arm, a leg, something. I can feel it there, it’s not numb, I should be able to move it. Open your eyes, close them. Stop pretending.

Me having a seizure is certainly angry. Especially since, most of the time, it turns out that actually I can’t move, or talk, or get up and say “ha, fooled you!” because, well, I’m having a seizure. And if I can move, it’s because I’m having an aura instead, and I’m still a danger to everyone, because I’m completely shot away. I’ve been known to giggle hysterically for no reason at all until I hyperventilate, or start walking around in circles, or sing loudly and tunelessly. I’m certainly not fit to be looking after children, or crossing roads or shopping in that state.

I had a fairly severe seizure earlier. I’d say it’s the worst I’ve had in…months. Maybe all year. I thrashed around so much that I felt sick. My eyes were open, then closed. I had some control over limbs, then I had none, and by the end I felt exhausted, headachey and nauseous all at the same time. And then, I got this wave of anger, out of nowhere. All of a sudden, I was absolutely nutting furious at… everything. Epilepsy, doctors, people. Life, basically, had shafted me, and I was sick of it. The adrenaline kicked in and I was going to do something. March, write letters, chain myself to railings, that sort of thing.

As my white-hot rage began to subside, plain exhaustion took over, clouding my memories of the seizure so that now, just a couple of hours later all I have left of an hour and a half are a few hazy snatches, a moment thrashing here, a minute or so staring blankly at the ceiling there, my son briefly popping into my field of vision to say goodbye before he departed on his hastily arranged visit to W’s parents, and then an unknown period of time lying pretty still and feeling crap. Some of it is put together retrospectively. W says I was shaking violently for about three or four minutes, so I know most of the time was me recovering. I tell myself that, and memories of lying in bed start to reform, growing from stumps to fill in the blanks. My brain has always been fairly good at this – for years I was convinced I attended my grandfather’s funeral aged 4 and had to sit in the car the whole time, and it turns out I was actually 200 miles away with my other grandparents. Nonetheless this memory was detailed enough to have me convinced, mainly because I was young enough not to find it odd that I’d be left alone in a car during a funeral in the middle of the Welsh countryside.

I have begun to question that self-loathing which appears during my seizures. Is it a by-product of adrenaline, the fight or flight process trying to kick-start my body into actually doing something? Or is it more complicated than that? (Probably.) When I was first diagnosed, I worked in retail, for a large chain. The company supported me, and took account of what the doctors were saying. HR didn’t care, the company was far bigger than me, and there were procedures which took care of everything. As long as I had my doctors notes, there was no problem.

The people who worked in the store with me were another story. Some were sympathetic, and helped me – it was one of my colleagues who was the first to suggest that I may have epilepsy, based on a first aid course she had just completed. But others doubted me, a lot, and gave me the impression that I must be faking. There were a lot of looks which said “Oh, that’s convenient for you”, and a lot of studiously avoiding me so that if anything happened they wouldn’t have to look after me. The early days of my coming to terms with the fact I had epilepsy were also riddled with self-doubt. I was nineteen, still lived with a parent, and had very little confidence. I noticed that I had more seizures at work than at home, so I began to get paranoid that somehow maybe this was all in my head and there was really nothing wrong with me at all. The fact that I had had an EEG which showed brain activity pretty classical of epilepsy bypassed me. I hated myself for ruining my own life.

Eventually I got over it, and realised that no, I was not making it up. After I was signed off sick indefinitely, and was away from those people calling names, I realised that what I was experiencing was bullying, plain and simple, and with the help of W (who I met a few months after being diagnosed) I got some confidence in myself back. But to this day, I sometimes wonder if a legacy of those experiences, of knowing full well that the people around me thought I was attention seeking and making it up, has given me this angry alter ego who just hates me. If it’s all the deep fears and insecurities, attacking me at my most vulnerable, grown from the ignorance of those who didn’t understand why I was having seizures out of the blue and assumed that I was simply skiving off.

2.5 Seizures and Counting.

I feel tense now, as though I have been wound tight. I can feel the itchy, fidgety sensation across my shoulders and down my spine; on the backs of my arms and calves; across my brow. I’m on a hair trigger, waiting for the seizure to out or dissipate. Hopefully sleep will do the latter to it.

The worst part is the waiting. Knowing that it’s coming, that it’s only a matter of time and there’s nothing anyone can do about it. Day after day, it’s always there, and it makes everything worse. I tense up because I am scared I’ll have a seizure, and the seizures come because I am tense. Now that I’ve entered this spiral where seizures are happening every day it’s just feeding itself.

I’m too exhausted, both physically and mentally, to do much about it. My neurology appointment isn’t until September, and my appointment with the epilepsy nurse has been cancelled until further notice. No one can help me until they can see me, and what I really need – more tests – are long waiting lists away even then. There is no overnight fix, just a long, dim corridor that has the hope of brightening again some day.

After my second seizure today, I had planned to call my local branch of PALS and see if there was anything they could do.  But there isn’t, surely? They can’t magic an appointment out of thin air, and they can’t make my epilepsy go away. Sure, they could help me complain and I could get a nice letter of apology for being so sincerely screwed over by the lack of epilepsy care in the UK, but how does that help me and my family? How does it help when I’m lying on the floor, twitching and shaking all over, and when my son comes over and pronounces solemnly that I shouldn’t sleep on the floor but on the sofa. (He was corrected, at which point he said: “You don’t have seizures on the floor, you should have them on the sofa!” Fair point, O. Fair point. It’s a lot more comfortable to be sure.)

I shouldn’t feel trapped in my own home by epilepsy. W shouldn’t feel constantly exhausted and worried because he cares for me 24/7, constantly on the watch for odd behaviour that could be a warning sign. O and M shouldn’t have to have a mother who vanishes for parts of the day and is barely fit for purpose at others. I have moments where I just want to scream with frustration. But screaming doesn’t help either. And when I calm down, I just remind myself that it could be worse. After all, I’ve never severely injured myself during a seizure. I’m not in pain. As a nurse said to me before my gall bladder operation, apart from the epilepsy I’m in remarkably good health.

It makes you wonder just how badly the people who aren’t as fit as me are being let down.

Eek, was that me?

Okay, I’ll own up, it was…sort of.

You know that feeling when you’ve had a bit too much to drink the night before, and you wake up and think “Oh, god, did that really happen?” Well, I’ve had a moment a little reminiscent of that.

Firstly, the seizure doesn’t appear to have done me any harm, although after posting that really quite incoherent blog I did go very out of it for a while, and then slept for over an hour.

Now that I’m sensible again (well, as sensible as I’m ever likely to be) I have wondered what on earth possessed me to lie there, on my side, with the netbook propped open against a pillow, and type my thoughts as I had a bad aura which subsequently turned into an eyes-rolling-limbs-spasming seizure, during which there was a moment where my chest locked up and I couldn’t seem to breathe. I can only put it down to the fact that I was more than half out of my mind at the time, and having gone upstairs to lie down, finding the netbook lying in the middle of the bed was all the encouragement I needed. I must remember to stop leaving it anywhere I might find it while having a crazy moment.

Anyway, apologies to anyone I might have freaked out, and to any readers I have already scared off. I’ll try not to post something so scatty again. Although, in the cold light of day, it does strike me as a good example of how weird a seizure or aura can make you feel.If you ever see anyone wandering around muttering to themselves, or staggering along like they’re about to fall down, please don’t automatically assume they’ve had too much to drink (unless it’s closing time, of course!). They could be having a seizure. I’m not saying to go up to people on the street and accost them, but if you see someone clearly acting in a strange way and they look confused and vulnerable, it could be that they need medical help, not shuffling away from. I’ve had several occasions where I’ve ended up staggering along a path like I’m falling down drunk when actually I’ve been about to have a seizure.

Medication Chaos.

So, I started taking Clonazepam the other day. Hooray, I thought, finally I get to do something positive to help myself.

Well, so far I have had two (perhaps three, my memory is failing me worse than usual at the moment) major seizures, and am experiencing a lot of anxiety, erratic behaviour and cravings for cake, chocolate, sweets, sugar, and food in general. Now, the latter part could be to make up for the energy I am expending having my seizures, which have gone back to being quite violent and forceful, and far longer in duration than they have been.

I have also been much drowsier than usual, and apathetic about a lot of activities which usually would hold my interest. Now, I appreciate that taking a new medication for epilepsy is different to taking a paracetamol. You have to give it a few days or even weeks for it to get properly into your system and have its proper effect. They have a long-term effect, so you can’t really expect results overnight. But, so far, I think its safe to say that my reaction to this particular drug has been a somewhat negative one. W agrees, and wants me to stop taking it.

Did I mention hat despite it making me drowsy, I am finding it hard to go to sleep at night? Last night I sat up jotting down ideas for a story because I couldn’t switch off when I lay down to go to sleep.

I feel tense, too. Jittery and on edge, and wanting to do things right away if I have to do them at all. I want to lie down under the bedcovers and not come out, but in the same breath I could u on a pair of shoes and go for a walk and not stop and not turn around and as I type I can feel by brain working faster and faster and faster. Hence the long sentences. It is notoriously hard to convey how it feels to have a seizure if you have never experienced it four yourself, and I am finding even harder to convey the sense of duality that I have right now. I find myself being influenced by everything around me – I am very suggestible. My MP3 player is playing music of a slower tempo now, and I can feel myself slowing down slightly – I no longer want to go out and run and run. However, I am aware that if I were to listen to something with a fast tempo I would be sat here drumming my fingers or tapping my feet and gettting irritable and impatient at all the people holding me back from my true potential, which is to walk and walk and not stop going until I fall down and go to sleep, wherever I am by that point.

DOes this convey something of the chaos that mind-altering prescription drugs can have on a person, and how utterly disruptive it is for a person with epilepsy, (or depression, anxiety or any other brain-centric condition for that matter ) to change or amend their medication? Could more people read this, and understand the dread I have right now about both taking and stopping this medication, about telling my doctor who will prescribe more drugs, and about the long, long wait I will inevitably have to get any progress which helps as opposes to hinders me? Because I don’t think people do understand to be honest. You say “epilepsy” and people go “Oh, that’s seizures, right?” And they assume that either you have seizures a lot, which is bad, or that you “take tablets for it” and magically everything has gotten better.

It doesn’t work that way. Here I am. I have epilepsy, I take tablets for it, they don’t work very well, and now that they are trying new tablets, they are making me feel a whole lot worse, and a whole lot more nervous about going out of the house, and the prospect of having to carry on each day this way and somehow raise two normal children is, at this precise moment in time, terrifying me. It won’t scare me later. I know that, because there is still a core part of me that, for some ridiculous reason, has this unending hope that somehow everything will turn out okay, because it always has in the past. I’m one of life’s optimists, I guess. That’s probably just as well, if I’m honest. It keeps me going through the bad times, and makes me, frankly, damned irritating when I’m having a good day. Still, W apparently loves me all the same, and he’s been giving me lots of hugs in the wake of my seizures. I may update a little erratically for the next few days, depending upon how I feel.

Cracks in the Walls

It’s stressful, you know. At the moment, my seizure frequency is higher than it has been at any point since…well, since my diagnosis about five years ago. I had two seizures yesterday while visiting W’s parents, and actually considered it a small victory that I managed to get safely home again on the bus without further incident.

Today, I should have taken M to a parent and toddler group and then a breastfeeding group this afternoon, but due to a poor night – an occasional fact of life if you have small children – both W and I were worried about me leaving the house without him. And then, about half an hour before we were all due to go out as a family, I got that funny feeling I get sometimes, and had to crawl upstairs and drag myself onto the bed. I felt my arms and legs going as I entered the bedroom. When I came back to normal I checked my watch and only about five or ten minutes had passed, but I can only remember a minute or so and then I have a blank. When I’m alone like that and there are no events for me to mark time by, I might as well have blacked out for all I can remember. I just get to a point where I am suddenly aware that I am lying in a rather uncomfortable heap on the bed, or on the floor, and I know how and why I got that way, but still have the disorienting sensation of “coming to” which makes me wonder more and more: “did I pass out this time? Will I pass out next time?”

Needless to say, I haven’t left the house at all today. I can feel myself getting more and more hermit like, and the stress is telling on W. He does a hero’s job putting up with me and my seizures, sometimes listening to him and lying down when instructed, sometimes loopy enough to insist firmly that I am perfectly okay right up until the point where I keel over. But it is relentless for him, and the more seizures that I have, the greater that burden of stress I put on him. I can’t go with him to the shops, but he’s worried to leave me behind. I can’t just sit around the house all the time (I go stir crazy, and that makes me worse), but going out is fraught with worries of its own. Even when I am at toddler groups and O and M are able to be watched by other people, during the few hours a week that W doesn’t have to worry about me, well, of course he does! You can’t just switch that off. He doesn’t get a holiday. And okay, neither do I. I always have to live with the fact that I could have a seizure at more or less any point. But while I’m actually having a fit, I’m too out of it to really care. It’s W who has to pick up the pieces, and watch both me and our children while it happens. And we both have to then explain to O why we were unable to go and meet up with Grandpa, or why we aren’t going to playgroup, and he’s still young enough to not understand. The other day he cried out “but I’m missing all the fun!” and it broke my heart. He does miss out sometimes, and it just isn’t fair.

How long will I be like this? How long will it take someone to find the right combination of drugs to keep this at bay? When will I get back to “normal”, if it even exists?