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Epilepsy and Society – Mutually exclusive??

Hell no!!

I am a fully paid up member of society and I’m an epileptic. I work hard, I pay taxes, I travel, I go to the gym (note I didn’t say I work hard at the gym!), I swim, I socialise at the cinema, pub, restaurants… I made a conscious decision to make sure that I acknowledge epilepsy as a part of my life, but to try not to let it be my life. It’s but a piece of my jigsaw.

So, there was this time when I was at the pub with family members and I had a fit. Did not see that one coming at all! That was way before I learned to recognise the signs. I still miss the pointers, but I’m getting better. I don’t get a strange aura, I don’t smell strange smells and I don’t get a strange taste in my mouth. These are all warning signs for some who suffer with epilepsy, but not me. The signals for me are too easily confused with the normal feelings of fatigue and even the onset of a simple cold. I don’t see the fits coming a lot of the time. And headaches? Well headaches terrify me. So, back to the pub. I remember being at the pub. I don’t remember the episode itself. What I do know is that fitting, whilst sat in a wooden chair at a wooden table surrounded by glasses and strangers is not the most comfortable place to be putting on the moves…Not for me, not for my family and not for the punters and staff. This was the first fit some of my family members had seen. I know that for sure. This was the first fit that 99% of the punters and staff had seen, only an educated suspicion. I think there was a lot of brandy sold that night although my family, the ones who didn’t go to the hospital with me, got free drinks….

I suffer with Grand Mal seizures or, as they’re more commonly known these days, Tonic Clonic fits. These are the type most people think about when the word fit or seizure is used. There is the fall, the shaking and with me, generally, a great deal of swearing! Some people appear to foam at the mouth and some people have toilet-type accidents. The potential for humiliation and injury is huge. To be honest, I’m not scared of the physical side, what I fear most is the emotional anguish that follows an episode. For those who witness my fits, it’s all about the physical. They see the pain I’m in, they see the damage being done to my face and body and they know they can’t prevent it.

For me, epilepsy is viewed in a very similar way, by society, to depression; if you can’t see it and touch it then it doesn’t exist. There isn’t a bandage or a scar or a cast that you can point a finger at and say “that’s what’s wrong”. It’s silent and it creeps up, but it’s no different to breaking a bone. And, for the person living with it, it is very very real. I’m one of the lucky ones. Where I work, most of the people are exceptionally supportive. They may not understand, but they try. Most of them don’t change their behaviours towards me and the ones who do, well if my epilepsy is a problem for them, then that’s exactly what it is – their problem. I know in my heart that some people treat me differently after they’ve witnessed me fitting because they don’t know what to say, they don’t know how I’ll react, they don’t know whether to mention anything at all for fear of upsetting me. It’s got nothing to do with whether they care or not. It’s the same with depression and, as I’ve said before, my epileptic episodes are always followed by a bout of depression. So what starts out with subtle changes in my personality and actions, so subtle they are often missed, that’s followed by a few minutes of shaking, can take months for me to get over. I try to act normally after a fit because it makes other people feel better, feel reassured that everything is ok. It’s a lie. I’m struggling massively with the internal turmoil. My life stands out to me in its stark reality. I feel like I’ve failed in a million different ways. I feel scared and lonely, yet I don’t want to see people. I know that I should see people, because those who are close to me love me, care about me and want the best for me. I need to be surrounded by these people, but I push them away. I retreat into a darkness that is all encompassing. My confidence is non-existent. When I slowly start to emerge, one or two more people have fallen out of my life. I don’t blame them. I don’t make it easy. But for those who are still there, be it in person because we live in the same city, at the end of a phone or just a like on a FB comment, I hold them all the more dearly. I probably don’t tell them enough. Everyone has their demons and over the years (decades) I’ve tried not to judge. My life is all about me, but your life is all about you. I sometimes fail in my desire to be non-judgemental, but I’m significantly less so, than I used to be. I’m a good person at heart, but I’m sure not a saint!

So, does suffering from epilepsy mean that you can’t be a fully functioning member of society? Does it mean you can’t go out and follow your dreams and goals? Absolutely not. It’s a choice though and each epileptic has to make the decision to live life or let epilepsy live it for them. I do realise that there are different types of epilepsy and differing degrees of severity, again, I’m lucky, I don’t suffer hundreds of fits a day, I don’t have to wear head-protection, I don’t have to be constantly supervised. I’m grateful for that. I’ve jumped out of an aeroplane at 12’000ft, I’ve done a cage-dive with great white sharks, I’ve discovered that quad-biking is not my forte, I enjoy watersports, I’ve trekked in a tropical jungle, I’ve travelled fairly extensively actually, both with others and alone, I have a responsible job, I own a home, I own a pet. I’m not allowed to drive, but I do have a disabled-persons train card! I have epilepsy. I am a member of society.

When we were kids, my brother broke a snooker cue over my head. I found out relatively recently, that he blamed himself for causing my epilepsy. I don’t think he does anymore, but we’ve never talked about it, so I can’t be sure. But, if you are happening to read this blog, you didn’t cause it. It’s a little quirk of nature that makes me super-special. But, brother dearest, you really shouldn’t have hit me with the snooker cue…..

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A first time for everything…

This is about my epilepsy and me. (Genetically pre-disposed, with a potential triggering via a skiing accident – I guess I’ll get to that). I didn’t think I would ever get around to writing this, but a very dear friend encouraged me suggesting it could be cathartic for me and perhaps helpful for others….so here we are. I will apologise in advance for grammatical and spelling errors, but these words are from the heart, not an English language book….

Just before Christmas 2013 I had a couple of fits at work. It has happened there before, but this time felt different. It’s hard to describe, but I’ll try. I knew I didn’t feel right, but I kept telling myself I was just tired. Even when it was suggested to me that I go home, I still maintained that I was perfectly ok, just a bit tired. I hadn’t slept well the night before. The feeling is more than tired though. I knew it. I was excited to give my colleague her birthday present, I’ve known her for 12 years and we’ve become good friends, always exchanging birthday and Christmas gifts and have gone on the odd girly weekend together. Only fly in the ointment… it was not her birthday no matter how much I insisted to her it was. Everything is happening just a fraction too slowly. Every word spoken to me is taking just a fraction too long to register with me. When I try to speak the words are forming in my mouth but I can’t make the sounds. Like when there is a lag on a movie or tv show. The mouth moves but the sound is out of sync. I notice the concerned looks and I try to smile. I know if I can make it to lunch time, then I’ll be proved right, it is just tiredness. Only problem is, noon is 5 hours away.

The feeling. When you know you haven’t slept well and there’s that lethargy, mild headache and slight feeling of nausea. Exhausted, I guess. That was washing all over me and coming in waves in my stomach. So desperate to be wrong. Fighting hard to suppress the feeling and act normally. Knowing on some level that it’s just a charade. Trying not to show my fear and trying not to make others worry. The feeling rises from my stomach to my chest and I wonder how much is fear, how much is tiredness, how much is panic and how I’m going to make it to lunch. Then the coldness comes. Followed by the sweats. I’m clinging on though. Coffee will help I tell myself. The café opens in an hour and that kick of caffeine will jolt me back to an even keel.

The feeling I’ve described happens every time. The difference this time was my awareness of it. On previous occasions, I’ve known I haven’t felt quite right, but never been able to remember so vividly the hours leading up to a fit. I remember the team meeting and I remember it being over. Apparently, I laughed in all the right places. I don’t remember that. I do remember rolling my eyes at a friend, aware that I was in an ambulance chair and that I was being wheeled away. On some level, I knew what had happened. I don’t remember falling face-first onto my desk and then face-first onto the floor. I don’t remember biting off a part of the side of my tongue. I don’t remember my glasses gouging into the bridge of my nose and breaking. I don’t remember blacking my eyes. I don’t remember my teeth breaking. I don’t remember the paramedics, I don’t remember what I said, I don’t remember what I did. I don’t remember feeling the pain. The next thing I know, I’m in hospital. Again.

My face was in a bit of a mess, but it healed not too badly at all (coconut oil – best thing ever!). My tongue took an age to heal though and, if I’m going to be totally honest, that was the most painful part of the whole episode, which isn’t bad considering work had to replace the carpet tiles around my desk because of the blood stains! The state of my tongue made eating, drinking and talking extremely difficult to do, but never one to shy away from a challenge, I didn’t let that stop me! I tend to go on little wanders when I’m under the influence of epilepsy and during this particular episode I apparently took myself down to cardiology to see if I could “help” there. Remember of course, that I’m clothed only in a vanity gown and we all know that the person who designed the vanity gown was either a slut or a comedian! I’ve never understood why they call them vanity gowns. The last thing they do is preserve any modesty what-so-ever! Anyway…the nursing staff attempted to curtail my excursions by fitting me with a wander alert. This is the medical profession’s equivalent of the electronic tag. I have a hospital ASBO! This is humiliating in the extreme (apparently I find having a medical asbo much more disturbing than wandering the wards with my ass hanging out the back of a hospital gown…*shudders*…),so I took the only course of action available to me – I went into the bathroom, prised the tag off (presumably with my broken teeth) and left it down the back of the toilet… You can take my clothes, but you’ll never take my freedom!

This time has been different emotionally for me. I had a pretty serious bout of depression and that’s a normal part of the process for me. The sheer exhaustion took weeks to shake. It is hard to describe the level of tiredness that comes after my fits. I know there are people out there who suffer with a seizure and can physically just get right back up and get on with their day. I’m not one of those people. The fatigue is immense. That doesn’t help the state of depression. I can normally shake it after about a month, this time it took over 2 months and it’s still lingering a little 12 weeks after the episode. The emotional side, for me, is the hardest part. I don’t deal well with my emotions at the best of times, after a fit it’s always worse and after this set of fits, it has been a very dark place to be journeying. There is saying that if it wasn’t for the dark, there wouldn’t be the light. There have been some flashes of light and clarity on the road.

I’ve been thinking how life is like a 5,000-piece jigsaw. You need every single piece to make a full jigsaw, but you don’t know where every single piece goes until your jigsaw is almost finished (unless you’ve done the jigsaw before and that deserves a whole other day of thought). Every single piece fits into the jigsaw somewhere. You probably have a vague sense of what your jigsaw is going to look like, but some elements will be surprising. Some parts are very simple, and some parts are very hard. Some pieces are very similar and you might spend a bit too long trying to make the wrong piece fit into a certain place. It’s frustrating, but makes it all the more rewarding when the right piece slots home. Every piece does, eventually, fit together and you sometimes have to wait to be able to use a certain piece at a certain point in your jigsaw. But, you can be building different parts of the big picture simultaneously and when it all comes together, the satisfaction is immense. Life has corner-pieces, just as a jigsaw does. Once you have your corner-pieces, be they values, places, people; you can put the straight edges into your life. That’s not to say the straight edges are the boring parts; no, they are the foundations. You need to have straight, solid foundations. Same as a jigsaw, life doesn’t come with the straight edges and corner pieces all pulled out ready for you to use. No, you have to find them. You have to put them in place. From there you can start to experiment with your jigsaw pieces. Your jigsaw, is your jigsaw. There might be a million of the same jigsaw out there, but no two jigsaws will be built in an identical manner. You make your jigsaw your own.

The last cluster of fits damaged me physically and have made me try re-evaluate mentally. I know who the people who care about and love me are, people I thought of as mere acquaintances have proved themselves to be angels in disguise, and I know who the friends are that haven’t given me a second thought. And, you know what, that’s ok. We are all living our lives the best way we know how and we don’t always know the demons that others have, and god knows we don’t always know how to fight our own battles! I’m grateful to all the people I have or have had in my life, their place in my jigsaw was to help me see the right place for other people/pieces. For those that I haven’t given a passing thought for when perhaps I should have, I hope that you can see me as a piece in your own puzzle. That can only be a good thing.