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)

Incredible talent (aka lovely things for you to buy)

A bit of a break from the norm, but I wanted to share the work of three of my housemates with you this morning. All three of them are artists or designers who are starting their own businesses and are immensely talented. All take commissions or are selling from their current collections. As much as it pains me to say it, Christmas is coming down the road, and something from an independent, talented small business is surely a more awesome gift than most things (given that the turn around time for commissions is 4-6 weeks, I actually feel a little less dirty for suggesting this - forward planning and all of that).

One thing I will say is don't expect to pick up a corset for £30 or a huge commissioned painting for a tenner. These are people's businesses - they're trying to make a living, and to earn a fair wage.

First up Matthew Knight's Art (aka Wittle Creations)
It always amazes me that Matthew's work is done by hand - the vibrancy and detail of it makes it come across as computer illustrations. We have some of this work hanging up in our studios and it's quite honestly stunning. Quirky, colourful, engaging. He also works on found objects (oil cans, bits of wood), which adds to the gorgeous visual impact of his work. The best thing to do if you see a piece of his that you want is to go chat with him on his Facebook page or drop him an email. Ditto for if you have something in mind that you'd like to commission him to make.

Website (under construction)
Tumblr (amazing showcase of his back catalogue)
Twitter
Facebook
Big Cartel (A3 prints for a mere £15)

Next up is Kiran-Lee Designs
Oh God, I want everything Kiran ever makes ever. I spend so much of my time perving over the sheer beauty of the corsets she makes that I'm pretty certain I'll end up with a restraining order by the time I'm done living with her. One I'm settled in my new job, I'm commissioning her to make me a beautiful corset. She only has a limited selection on her website, but she's open to commissions and has made some gorgeous things. These are honestly some of the best made corsets I've seen. She takes a lot of time getting them just right, and the quality of the stitching is second to none. She also designs other lingerie (bras, knickers etc) and costume pieces (pasties, masks, hair clips etc). Also, if it helps, she has one of the most scathingly sarcastic senses of humour ever.

Facebook
Tumblr
Etsy

And finally, Tatterdemillion Bazaar
Living with Lorrianne (who runs Tatterdemillion) is best described as living with a modern day courtisan. She's always off somewhere or other bringing laughter and entertainment and generally being her own wonderful, entertaining self, often dressed in naught but a pair of horns she's made and some gold body paint. When she's not generally being fabulous, she's making beautiful things for other people to be fabulous in too. Tiny hats, massive horns, obscenely ornate necklaces... anything to add an extra bit of wow factor to a costume or outfit (and I can confirm that her horns are wonderfully comfortable to wear and look awesome on)

Facebook
Etsy

As I said at the start, these are fledgling businesses and they'd appreciate all the sharing, love and purchases you can send in their direction, so go like, comment, chat and maybe even buy. They're all lovely, lovely people and I'm sure if you went and said hello, they'd be happy to chat with you and maybe even put together a one of a kind commission.

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.

Tired of looking at the same four walls (aka a bit more on life with Non Epileptic Seziures)

Firstly, let me say thank you to everyone who got in touch and said some really lovely things about my last post on Non Epileptic Seizures (which you can find here) - it's always nice to know that something I've written has been informative or helpful in some way.

I thought I'd give you a bit of an update and also share a few coping strategies that I've been finding helpful. I know that a couple of my readers have Non Epileptic Seizures, and I'm hoping that by the wonder of google, a few more might find this post helpful too.

I've been having seizures since mid-April now. At first they were sparse, then they disappeared pretty much completely, then they came back with destructive vengeance, averaging around 20-25 a day for a good 3 or 4 weeks. Right now, I seem to be sitting in the lull, the aftermath and I'm only really having small wobbles with very few seizures at all for the last week.

Now obviously, this is nothing but a good thing - it's nice to see some of the bruises start to fade and to feel a bit less exhausted all the time. It's nice to be able to go out and not be quite so worried that a loud noise is going to suddenly trigger a seizure (although sometimes it does). Essentially, it's nice to feel like I can socialise again.

One thing I have found though is that as the seizures have started to decrease, my general sadness and frustration as started to increase. I think part of this is down to working from home and being pretty isolated as a result, part of it is guilt from feeling like I've put so much on my best friend who's been looking after me most of the time, part of it is an adrenaline drop and part of it is that I just want life to go back to normal. Although I can socialise a lot more, I still have to be careful with how I use my time.

Part of it is also down to starting to understand (with the help of Jed and a lovely psychiatrist) the root causes of my seizure. Part of it is OCD and anxiety based (I have huge issues surrounding time), part of it is rooted in stuff from my childhood. Most of it though seems to stem from my time in the church. That's something I'm still not very comfortable talking about, and even writing and publicly acknowledging that is a painful thing to do. But it's important that I do.

So, what have I been doing to cope? I've been working from home, which has removed a lot of the stress of travelling. Sadly, it's been counter productive in terms of other mental health issues, and means that I tend to be quite teary during the day because I feel very alone. I'm hoping to get back in the office soon now that the worst of it seems to have died down some.

I've also been practicing Mindfulness meditation daily, which really helps a lot. There's a notable difference between the days when I meditate and the days when I don't (namely, how likely I am to have a seizure). I also try to practice yoga daily and do bits and bobs of hula hooping and poi.

I try to get out and see people, although I've been asking most of those people to come see me in the town where I live, instead of going into central London to do them. I've felt quite guilty about this, as I live a fair way out, but I also know that it's been the most important thing I could have done, and most people don't mind travelling if you explain it to them properly.

I've been lucky enough to find other people with the same condition and talk to them about it, although I've tried to make sure that I stick with the pro-active positive people and stay away from the scary "Your life is oveerrrrrr" facebook groups. Positivity and pro-activeness are crucial.

I've been learning that it's ok to be pissed off and cry sometimes, but it's important not to wallow. At the moment, this is one of the thing that I find hardest. I feel so frustrated and trapped that I end up crying when I don't want to and then don't know how to stop. I try hard to just communicate well.

I treated myself to a really good pair of headphones (these ones) that I can throw on if noise or outside distractions get too much. They block out quite a lot of outside noise and have stopped several seizures dead in their tracks. Definitely recommend them.

So that's sort of where things have got to. I've been referred on to yet another psychiatrist who is a bit better equipped to deal with transition issues and I'm trying to muddle my way through. Mainly, I'm trying to find ways to not lose my mind whilst working at home, so if you have any suggestions, I'll welcome them with open, loving arms.