2013: What will your focus be?

2012 has been a weird year. It's been phenomenally good in parts, but has also left me feeling a lot less confident, sparky, strong and independent than I did at the start of the year. Now, that's not to say that I'm weak and boring and shy - I'm pretty fucking strong and positive all things considered. I'm just not quite the super strong badass that I know I can be. Which has got me thinking about what I want next year to be.

I learnt a long time ago that having a list of new year's resolutions that I decide whilst half-baked on New Year's Eve is never going to hold, so instead I've been thinking about the idea of my focus for the year. A broad theme that I want to be inspired and motivated by. And three words come into my head over and over again:

Strength. Challenge. Adventure.

So that's what my 2013 is going to be. I have lots of ideas buzzing around my head about what that's going to look like, and I'm currently in the process of writing down plans and dreams and projects that I think might be awesome. I can tell you now that the phrase Super Strong Badass is pretty much going to be my mantra for the year (and I'll probably be encouraging everyone I know to make it theirs too).

What is your focus for 2013 going to be?

Time skips and the whowhatwherewhatwhys?

For the most part, I'm quiet on this blog at the moment. My passions have changed, my life has changed - a lot of the things I want to blog about don't really fit this blog. So I leave it here and spend my time talking about wishing I wrote more and attempting to come up with a snappy title for a new blog, where I'll write about the things that are dear to me. But here's where I come back to when I just need to write it all out. This is more for me I suppose, although it may be interesting to read if you've found my other blogs on Non Epileptics Seizures interesting (there's a link at the bottom to the first one if you want to read it)

My seizures had, for the most part, gone. I was having the odd very small one (and the very occasional large one) for the best part of a couple of months, which was nice. Then I had a three fairly stressful weeks, and somewhere in amongst the stress, my brain opened up whatever shitty door it is, and my seizures crept back out. In general, it's been easier this time. They're nowhere near as unrelenting, their general tone has been calmer and I've been in a much stronger place to deal with them, both mentally and physically.

Yesterday was different though. Yesterday I had a seizure which, including the run up and the aftershocks, lasted from 8.30am to 3pm. It's difficult to explain quite what my seizures are like, but often, they're not like you'd think they are. For the bulk of this one, I was sat in Starbucks, on a chair in the corner, shaking uncontrollably. From the way people looked at me, I clearly looked like I'd decided to get over the Monday blues with a handful of class As or a few bottles of gin. Either that, or I looked like a crazy person, which I suppose in many ways is right. My seizures can be classed as a dissociative disorder and even when they're not, they come under that gloriously under-funded umbrella we like to call "Mental Health".

The thing about this seizure that made it quite so scary is the loss of knowledge of who I was, where I was and what the hell I was meant to be doing. I'd pick up my cup of tea, raise it to my lips and then pause, looking at the cup with what I imagine was confusion, as I attempted to understand why that cup was near my lips in the first place. I thanked my brain for the gift of auto-pilot as I crossed the road from my bus stop with no real idea of where I was, and managed to find myself in a Starbucks. I took the few minutes of lucidity to text Jed and let him know where I was and what was happening. I felt lost, alone and disoriented. And yet all people did was sit and stare at the shaking girl. I should know by now not to expect better, merely to be pleasantly surprised and thankful when people do offer to help, but when you feel that lost and confused, having people stare doesn't help you feel less vulnerable.

It's not the first time this has happened - I have whole patches of my summer that I genuinely can't recall. I couldn't put events that happened between the end of March (when I first started having seizures) and the end of August (when they cooled down) in chronological order if I tried. I'm aware of the fact that I find it harder to recall and retain facts than I did before I started having seizures, and I get patches where I don't know what I'm saying or doing.

These are the bits that upset me the most I think. The shaking and the aching and the exhausted, wobbly feelings that fill my body are frustrating but fine. I can deal. The loss of control of my words and thoughts though - that side cuts deep. I see the fear and the worry in the eyes of people who love me, and I wish desperately that I could make it stop, that I could remember who I am and where I am and remove the look of terror and desperation from my face.

And I will. I will overcome these. I reflect back on the progress I've made, and I feel nothing but pride for what a badass I've become. And for what a badass Jed is. Some of you reading this might know him, a lot of you won't, but seriously, that man is incredible. He's pretty much single handedly cared for me the whole time, and that's a pretty exhausting, frustrating task. I'll shush now because he'll probably tell me off for gushing over him, but if you know him, and you know I'm having seizures, he's probably appreciate the hugs. And I'll stop here, because I'm teary with gratitude and exhausted by frustration, but to write this out has helped. If you've read this far, thank you.

(I'm going to put a link here to my first post on life with Non-Epileptic Seizures because it explains what they are and all that jazz)

Making progress (and dancing irreverently)

So, there's an exciting thing happening today (although not the exciting thing that I keep saying I can't talk about.... there's a post coming about that later).

Today, I'm starting Grade 1 Ballet with Irreverent Dance. Now, partially this is massively exciting because I'm learning ballet with a bunch of awesome people in a safe and encouraging environment. It's a place where I can be myself, and not feel the pressure of trying to fit into the Ballet stereotype. I know for a fact (from the people who raved about last term) that I'm going to have fun and make some amazing new friends. And the classes won't be *too* serious.

But the thing that makes me most excited is that I'm well enough to go this time around. I registered for last term, hoping to have got my seizures under control enough to deal with something like a ballet class and all the things that come with it (travelling into London, concentrating on learning a new thing etc), but the week before I was due to start, my seizures kicked off with a fearsome vengeance. It was a pretty hard knock to my confidence and my happiness. At the time, it felt like seizures were blocked me from just doing the normal things I wanted to do (and the reason it felt like that was because they really were, in a horrible, boring way).

It's only really in the last couple of weeks that I've started to see my confidence eeking back, my happiness raising a little and my body feeling up for the challenge of exercise and activity. I've been spinning poi daily, and spinning a little hula hoop here and there too. I span fire poi on a beach a few weeks ago. And on Friday, I went for my first run in about 5 months. It was nothing special, just 2 laps around a fairly small park, maybe 10 minutes of running in total, if that, but it was something. A run has genuinely never felt as good as that one. Seeing my body able to do the thing I've missed so dearly. It felt like a significant moment. A symbol of freedom being given back.

It's weird - I'm not completely better - I still have a blacklist of cafes that I know will trigger seizures within 10 minutes of entering, I still take my giant (awesome) headphones and a bottle of diazepam everywhere with me, just in case. I still leave parties early if they get too loud and have odd patches where I space out and forget entire conversations. I still see the looks of concern on my best friend's face if I'm staring into the middle distance for no apparent reason, and I still have days where I end up collapsed in a shaking heap on the bed, biting back tears of frustration. But I feel better, stronger, more in control. A seizure or a patch of spaceyness doesn't throw me as much as it did. I'm not as angry at my body. I don't feel so sad or so alone. I actually spend a lot of my time feeling lucky and appreciative that things are getting better and that I'm surrounded by so many wonderful people who've done and given so much.

For me, starting a Ballet class today isn't just another exciting event on a sometimes too busy calendar. It's a symbolic marker in my journey towards normal life again. And that, my friends, makes me happier than you could possibly know.

The way things were

I remember what life was like before seizures came along.

I remember being able to travel on the tube or a noisy bus without having to wear headphones or contemplate another route.

I remember planning days or evenings with my friends where we did the thing we'd planned to do, and the night didn't end with me shaking in the arms of my best friend and noting the look of concern on his face and the stares of passers by.

I remember working in a bustling office and chatting to everyone and anyone, and going to noisy parties where I could dance and laugh and not be bothered by the booming sound system.

I'm sick of being careful and cautious and worrying about whether x or y will make me ill. It's tiring and tedious and boring as fuck.

I deal with them all in the same way - mild exasperation and boredom coupled with a resolute steadfastness and refusal to let my spirits be dampened too much.

But I do miss the way things were. I'm really looking forward to that coming back.