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.

4 thoughts on “A first time for everything…

  1. Hey K 🙂
    When I first read this blog post I was taken aback, to be honest. Of course I know that you suffer epilepsy, but I had no idea how badly it affected you… I know you sometimes hurt yourself, but the emotional pain you go through – I totally hadn’t grasped that. And those feelings you described before the fit comes on… that must be so hard to deal with… and the loss of control…
    I also had no idea that it takes you so long to recover after a fit, the fatigue you suffer. My heart hurts for all you go through 😦
    I know you might sometimes feel that people don’t care about you… but I, for one, simply had no understanding of how tough the condition is for you. I think your blog is a fantastic way of raising awareness… one post at a time… for you and so many others with epilepsy. Keep writing 🙂
    One last thing – you will always be a piece of my puzzle, my friend… you know who I am 🙂
    Take good care of yourself xoxoxo

    Liked by 1 person

  2. Hi,
    I’ve had epilepsy for nearly 20yrs and always felt like I was the only one who felt like I was on some dodgy film where everything seems out of sync, I’ve tried to explain to people but just end getting a blank look and the feeling they think I’m making it up. During one of my first fits (I suffer from both grand mal and petite mal) I fell off a chair whilst getting blood taken, knocked my kneecap out of place (and it stayed out of place during the whole fit!) and as a result still have a lot of pain in my knee, I have also broken my nose, nearly fractured my cheekbone, chipped numerous teeth, black eyes, chipped bones in my hand, and taken god knows how many chunks out of my tongue, and as for the bruises…..well I’ve had a few interesting ones.
    I’ve felt the depression taking over after a fit, and struggled to get through it but my family have always been there thankfully to help me up, make me laugh about it rather than cry. but I have lost a few people who I thought were friends because it scared them, which left me feeling alone but I got back up eventually and made new friends who although scared did stand by me.
    it’s hard but there’s always a way through the darkness when you have someone to help guide you

    Liked by 1 person

    • Hi Hazel
      Thank you for your comments. It’s always easy to think you’re the only one feeling the way you do, and the reaction of others as sometimes made me question if I am just making it all up! But no, they just have no way if being able to understand it.
      It sounds like you have some good people around you and that’s a blessing.
      Take care

      Like

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