AAW 2016

Well, you know what time it is, folks!

…Or rather you don’t, because honestly, Asexual Awareness Week is a pretty non-major event as far as most people are concerned. Hell, it’s something which slips under my radar at times and I am asexual, so I can’t even blame anyone if I’m honest.

But why? Why is it such a small deal in the wider world? Hell, why do we even bother? After all, there’s coming out day, and pride week, and all that other MOGII/LGBT+ stuff we could take part in. Why do we need our own special snowflake week, yeah?

Well, here’s the thing. I’m pretty sure that everyone’s heard of being gay by now. Much as there are a whole class of bigots who deny that that’s a thing, more or less everyone has heard of being bisexual as well. And yet it seems that, whenever I come out to someone, chances are that my not-so-startling (if you know me) revelation is followed by a question along the lines of:

“What’s that then?”

And I’m not gonna lie, getting that question is always preferable to its cousin: “What, like a plant?” Firstly, it displays a fundamental lack of biology which is frankly annoying. (I mean, come on. Most plants reproduce sexually. There’s this stuff called ‘pollen’ – you may have heard of it, and it’s kinda sorta plant sperm. Yeah. You sniff that flower. Get nice and close. What’s not to love about plant genitalia, right?)

Things are getting a little steamy in here, clearly

Ooo-er…

And secondly, it’s just another way to other asexuality. Like somehow I’m less of a human because I really don’t understand how that whole sexual attraction thing works. I mean, there are many ways in which I consider myself a less than perfect specimen of humanity (I have a faulty brain, dodgy blood pressure, and I was down one organ before I hit 25, for starters), but the fact that I can’t get my head around how the thought of a person with no clothes on means “SEX” really doesn’t seem a big deal to me.

You know what is a big deal? The fact that I spent most of my life having never even heard of asexuality. The fact that I was able to go all the way through my teens, reach adulthood, have kids, get married, and not once have come across it. This, despite the fact that it was no secret among my friends that I was singularly disinterested in the whole concept of dating (seriously, what was the point? All people ever did was stand next to what I saw as a random boy and smoosh faces with them where everyone could see, presumably for the sake of saying you’d reached X rung on the sliding scale of “who is the most arbitrarily attractive/popular boy I can attain” ladder. Having shared interests or doing anything other than stand in public and Be Together was something I saw no evidence of whatsoever), and that I thought the idea of kissing someone was kinda gross. I still think it looks pretty weird, to be honest.

And this, neatly enough, brings me back around to Asexuality Awareness Week. Which exists not only for Ace Pride, but also to let the world know that, hey. We actually exist, yeah? And it’d be great if people could stop with the dehumanising jokes, or the assumptions that it’s some sort of mental illness, or that it comes with a predefined set of personality elements which come as a job lot.

We’re not Borg. As much as I’ve described my asexuality in this and other posts – my experiences, my attitudes to attraction and sex – not everyone who is asexual will identify with those feelings. So it’s a shame that the little representation asexuality tends to get is along the non-sexual robot lines.

It’s alienating again. It’s lumping everyone together, and making an assumption that a lack of sexual attraction – or even a lack of interest in sex altogether – means an absence of any emotions at all, or an inability to understand them in other people.

I can go weeks or even months without especially feeling any strong need to have sex. It’s a nice thing, but it’s not essential to my life. And is there anyone out there who could seriously claim that I’m emotionless? Frankly, the idea is laughable. We’re in a world which is finally (and, granted, slowly in places) moving away from stereotyping all gay men as being camp, or of assuming that all lesbians are butch. Why do we have to replace those pointless stereotypes with new ones?

Because the most amazing thing I learnt when I became part of the asexual community is that there’s no right or wrong way to be ace. Moreso than any other community I’ve personally interacted with, the asexual community has a spotlight focus on validation and the fact that we all experience things differently. And if there’s one thing I want to make people aware of this week, it’s that. We’re not cold, we’re not inhuman, we’re not robotic. Asexuality is an orientation, not a personality – and as such, it’s about time people knew a bit more about it, yeah?

The Asexual Flag

Plus, our flag’s so pretty!

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.

AAW Words of Wisdom (I hope!)

So! It’s the second day of Asexual Awareness Week, and the theme for today is Words of Wisdom. I’m not an artist so I was a little hesitant for yesterday’s theme of art, but I am a writer. If I can’t come up with some at least passable Wise Words then clearly I am a bigger slacker than I’d previously given myself credit for.

Well. Wise words on the subject of Asexuality. It’s tricky really, because a large part of me is keen to stress that it’s no big deal, that hey, I’m not trying to intrude on anyone or be an attention seeker, or invalidate other Queer people by claiming a space for myself in the MOGII (Marginalised Orientations, Gender Identities and Intersex)/LGBTQIAP+ community.

But really, isn’t that part of it? Part of the problem? Asexuality is the new kid on the block, orientation-wise. It’s only just been recognised as an orientation and not a condition (and about time!), and frankly, most people haven’t even heard of it. So, much as I don’t want to stand up and claim to be some sort of special snowflake, another part of me feels that I have something of a duty to be Out and proud, simply so that another teenager out there maybe escapes the teenagedom I had.

I’ve probably mentioned before that I had a pretty sheltered childhood. I never did get out much – mostly I stayed at home reading books, playing computer games, and writing.

Boy, that writing though. I’ve never been a poet, but teenage me was blissfully ignorant of that fact, and wrote heaps of the damn things. Heaps of kinda rubbish stories, too. And you know what? A whole bunch of them might have been about being lonely, or death, or being different, but oddly enough, love and crushes weren’t a feature. It was a running gag among my friends that I’d skip over any scenes like that in books. I felt (and still feel) distinctly uncomfortable even watching people kiss.

And yet, for all that, I knew that I wanted a family (naturally, wanting children has nothing to do with orientation, and neither does someone’s fitness to be a parent). Which meant that I knew that someday I’d end up with a man, even if for a long time I was adamant that I could still adopt, and avoid the whole icky kissing-and-more thing. The thought that maybe I didn’t have to? That it wasn’t an inevitability? That wasn’t on the table. I went to an exceedingly hetero-normative school, and in those pre-internet days, there was no one to tell me that what I was feeling was normal, or that there were others like me.

For years I was the odd one out; the only one who really didn’t understand the point of boy bands (I still don’t understand the fascination with manufactured pop groups, btw), or who didn’t have a crush on an actor. Instead, I told myself that clearly this crush or infatuation stage was just something I’d skipped somehow, and boy, wasn’t I lucky? After all, adults didn’t go all gooey over boys or men (or women) the way my classmates did, right?

Yeah, wrong. I think I managed to miss the fact that I was deluding myself by reading over and over accounts of people who fell in love through adversity, or over time. I wanted a partner – and in my head, I always made that distinction of “partner” over “boyfriend” – and that was just what fantasy novels offered. Relationships built on friendship and trust, with any physical affection nudged to the background or off-page. When I finally entered a relationship, I had no idea that I wasn’t experiencing sexual attraction because I had no idea what it even was. It’s not as though we live in a world which encourages women to be open and honest about their sexuality, after all.

The first time I encountered the term “asexual” was in the webcomic Girls With Slingshots. I was…perhaps 25? It didn’t register, because the asexual character in the comic did not engage in sexual activities, whereas I fluctuate between indifferent and favourable. (For those unfamiliar with the terminology, this describes my willingness to engage in sexual activities myself, and not my view of sex in general. I am also sex-positive, in that I believe people should have as much – or little – sex as they want, without being shamed by anyone.) I had been surrounded by a hetero-normative society for so long that I was unable to divorce the concept of sexual attraction (and acting on it) from love. It has taken me the last two years to unpack that, and to grow into a space where I feel comfortable to state that I am Asexual, with a capital A. I arrived via the label of Demisexual, because for a while I was unable to accept that the attraction I feel/have felt (to only a very few people throughout my life, it has to be said) was romantic and sensual, not sexual. It was a huge shift to really think about what I was experiencing, and not try and make myself conform to what society told me I should feel.

Nowadays, the more I look back on my teenage self, the more obvious it is. I start to wonder how I ever missed it; from writing a fantasy series about a reproductively asexual race of people (so I didn’t have to include romance, because that inevitably led to kissing); to my conviction that I wanted someone to sit quietly with and talk to for a partner; to my squishes on classmates which I knew couldn’t be crushes because I never wanted to kiss anyone; to my utter blindness to anyone flirting with me up to and including the point where I went on a date without realising that the other person wanted to kiss me until they actually kissed me.

And the common thread through all of it, the one single, solitary thing I wish I had known through it all? That hey, it was okay. There was nothing wrong with not wanting to have a relationship, and I didn’t need an excuse like “I’m too busy writing”, or “I’m just awkward”. I’m not awkward at all. I’m just not sexually attracted to people, and after almost a lifetime of teaching myself to pass as straight so that I didn’t seem so odd, I’m a little muddled up inside still. For example, I have a tendency to point out innuendos all the time simply because for years I never saw them and was the butt of jokes in that regard. Now I over-compensate.

Another, less healthy example, is the fact that I had huge self-worth issues as a teen because guys only seemed to notice my breasts, and people would compliment my hair, and I didn’t see the purpose of either of these types of comment. I have moderately large breasts – did that mean people were only interested in those, and my value in their eyes derived from my appearance? I have shiny, thick hair – did that mean other women would judge me based on how my hair looked? I had no measure of what was “attractive”. I still don’t, really. I judge my appearance based on how society tells me a woman should look, because I had to learn what “sexy” meant from books and television. I don’t have a metric for what attractive is. I look at myself and I see….a body. I look at other people and I see…also bodies. It’s something humanity as a whole has in common; isn’t that great! But beyond that? Nope, not a clue.

I’m rambling now, because frankly, there is so much I could say on this subject that I’m pretty sure I could write a book. Honestly though, the one thing I come back to time and again is the wish, the passionate wish, that somehow I had learnt about all this sooner. That I hadn’t spent my entire teens and a chunk of my adult life feeling that I must be strange or weird because there was something out there which other people all seemed to understand and which I didn’t. And now, here’s a week about awareness, and I can take a step to make that wish come true for someone else. I can be visible for another teenager who feels kinda weird and different and out of the loop with all the kissing nonsense going on around them. I can stand up and say “THIS IS REAL. YOU ARE NOT BROKEN.”

I am not broken. I am not wrong. I’m just asexual. And I’m not alone, either.

Concussions, and other fun things

There are few things in life which I value quite as much as the ability to think clearly. Food, family, and somewhere to live are all up there, of course, but aside from the basic necessities of living, what do you actually have if you can’t think?

I don’t mean thinking as in contemplating the deeper mysteries of life and all that (although I am the sort who enjoys that too, now and then), just… thinking. Being able to sit and know where you are, know how you’re feeling. Anticipate the finer things, such as how you’re going to get up, go into the kitchen, and put that kettle on for a cuppa. And then being able to get up, and not stop and think “Um, I’m in the kitchen. What was I about to do?”

A handy mug of tea

This, Jemma. It’s called tea, and it rules your life.

Last Friday, I had a pretty bad seizure and, although I don’t really remember doing so, hit my head kinda hard. I know this, because there’s a nice, handy bruise on the back of my head to remind me every time I lie down the wrong way. Now, this is a good opportunity for me to get sidetracked and point out that this wouldn’t have happened had the people around actually known what to do when someone has a seizure, and believe me, I will, another time. But today, the focus is the aftermath. The why, as it were.

Continue reading

Purple and Me

I’ve always quite liked purple as a colour. It’s rich, and varied – almost more so than any other colour. It varies from lilac to aubergine, merging with pink in fushias, and touching on blues at the other end.

I wonder if that is something which subconsciously occurs to people who choose it as a colour to represent them. Today is Purple Day, a day started by Cassidy Megan in Canada to raise awareness of epilepsy that is well on its way to going worldwide. It’s an amazing feat for anyone, let alone someone so young.

Purple Day Logo

And it’s a day designed to bring people together, to spread knowledge, and increase understanding. It brings many disparate people together for that purpose, under a purple banner. Every year more countries recognise it, and Cassidy’s message spreads a little further. It’s an inspiring thing to behold, and I am proud to do my part, in whatever way.

This year, admittedly, that part is just wearing a lot of purple (and coercing The Girl into doing the same.) Next year I hope to be brave enough to go the whole hog and dye my hair purple and raise some money. But that’s the future.

Purple has more than one meaning for me, though. The asexual flag is not a rainbow, it is a gradient. Black, which represents asexuality. Grey, which represents grey-asexuality and demisexuality. White, for non-asexual (or ‘allosexual’) partners and allies. And finally, an anchor below them all; the purple stripe, for community.  Belonging.

The Asexual Flag

 

It’s a rich colour, a bold colour. It comes and goes in popularity but it never really goes out of fashion. I love it. I love it for its varied hues, for how there seems to be a shade to go with pretty much everything. I have purple clothes, cushions, jewellery, and notebooks. I even have a purple left-hand-friendly vegetable peeler, although that was more happenstance than intent.

It struck me this morning, how serendipitous it is that one of my favourite colours should also happen to represent me so well, no so many levels. Oh, certainly I think we all favour colours which reflect us on some level. But Purple Day started after my purple obsession began, and I’ve been on the road of grey-ace self discovery for less than a year.

So chance plays its part. But I think a lot of people are drawn to the colour for the same reason I am. There’s a shade of purple for every mood, every occasion, bold and pale, warming and cool. And it’s often seen as a non-conformist colour, too. As the poem goes: “When I am old, I shall wear purple.”

I don’t feel like waiting until I’m old. I’ll wear my purple now. Gothic days, modern days, conforming and contrary. For epilepsy, for community, and for identity. Loud and proud.

 

ESAendgame and Me.

So, I’m hauling myself back from the shadowy realms of the dead blog god’s domain. Not just for epilepsy this time either, though that is why I started this little space. Today though, I want to talk about a bigger issue.  A wider one which affects hundreds of thousands of people up and down the country and has led to hardship, despair, fear and even death. I’m going to be as impartial as I can in this blog despite that though, and lay out just what the system is that people are protesting.

For a long time now, I have been a recipient of Employment and Support Allowance, or ESA as I will refer to it from now on. This is the benefit that replaced the old Incapacity Benefit, and is a benefit for people who are too sick or disabled to go on Jobseekers Allowance.

That point is worth repeating. This is a benefit for people whose health prevents them from working as an able-bodied or fit person can. Obviously, this is a wide ranging bracket, so ESA is split into two groups. The “Support Group” is for people who are incapable of any kind of work, and who are highly unlikely to ever be able to. The other group is the “Work Related Activity Group” (WRAG), for people who probably could work, or whose health condition may not be permanent, but still, they’re not fit or able-bodied enough to look for a conventional job as would be required by Jobseekers Allowance claimants.

People in the WRAG (such as myself) are encouraged to participate in “work related activity” such as training programmes, voluntary work or work focused interviews – some of which are mandatory unless you are a lone parent with younger children.

By far the biggest hurdle people face, however, is getting placed into a group and then staying there. Claiming ESA is easy enough, at first. You go into the assessment phase and have to provide notes from your GP stating that you are not fit to work. And if your GP is willing to state that, then chances are, you aren’t. Because a doctor that knows you and your medical history (and all the back and forth between any specialists you see) can make that judgement, and is hardly going to lie. I see my GP a lot and he recognises me when I come in, but I can’t for the life of me imagine him or any other GP committing fraud on mine or anyone else’s behalf.*

However. When you apply for ESA, it’s not just a matter of providing doctor’s notes. You also get put on the list for a “Work Capability Assessment” or WCA. This is an interview process outsourced to a company called ATOS, wherein a “doctor” who has never met you before over the course of one interview decides whether or not you are as sick as you (and your GP) say you are. This would be problematic enough on its own, but ATOS has a track record for getting the decision wrong. (Note: that article is two years old and yet ATOS are still in charge of WCAs)

Terminally ill cancer patients have been found fit to work. People with severe epileptic seizures have been found fit to work only to die a few months later from those same seizures. Profoundly sick and disabled people have been left destitute, forced to appeal decisions which took away their only income, and 40% of those appeals against ATOS are being upheld. 16% of ATOS’s decisions overall are being found to be incorrect.

The principle behind ESA – to support the sick and disabled who cannot work, and provide the correct assistance to those who can work to help them find employment – is one that few disagree with. People want to work. I want to work. But I also don’t want to go through the stress and fear of waiting for a letter to arrive on the doorstep telling me that a stranger I have never met has decided that I don’t need that extra support.

WCAs are repeated. The “brown envelope” that comes through the door periodically can re-summon you to display your incapacities, or demand that you fill out an exceedingly long form with tickbox options to display how you are sick or disabled. This side of things is the other problem with ESA. Sickness and disability does not fall into neat little tickboxes. Yes, some people are demonstrably disabled or sick. Blindness, cancer, use of a wheelchair, the lack of motor control to pick up small items, these are all tangible ways in which some people can “prove” they are disabled.

What, then, about those with learning difficulties – those who spend their lives trying to appear normal, only to be forced to tell a stranger all the cannot do; those with autism or aspergers who are severely traumatised by having to talk to a person they have never met; those with mental health issues whose health rapidly deteriorates from the stress and fear of having to prove themselves and the prospect of losing everything if they can’t; those with conditions which vary, such as ME or fibromyalgia, with few “tickbox-worthy” symptoms but whose lives are dominated by these problems?

The answer is that many of them are found “fit to work” and shunted onto Jobseeker’s Allowance – only to be told by the jobcentre that they are too sick to work and therefore cannot claim that benefit either.

This is a system which is deeply and inherently flawed. It was flawed from the outset, too, because it was designed to save money, to reduce the welfare bill. Let me direct you to my asterix point below, and that 0.5% fraud rate. The only way to reduce the cost when there is a remarkably low fraud rate on a particular benefit is to take said benefit away from people who are entitled to it. This is what has happened. ESA has been taken away from deserving people so as to reduce the welfare bill. And as a direct result, people have died.

This is where the ESAendgame campaign is coming in. Such a system, which knowingly lets down society’s most vulnerable people, has to change. Has to be replaced with a system which supports and works with them, instead of against them. And to do that, we need everyone to work together, to stand up and make themselves heard, to say “Not In My Name”, and demand that change comes. Now.

*As it happens, the proportion of ESA and DLA claims which are fraudulent is around 0.5%

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.

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.

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!