Psychiatrist, protein and progress, oh my!

So it's a New Year, and despite all of my hoping and wishing, my seizures still exist. I'll admit that there was a small part of me that was wondering if maybe when the clock struck midnight I'd be magically cured and wouldn't have to think about my seizures anymore, but alas no.

One thing that has happened is I seem to have reached a point where my recovery time after each seizure has dramatically reduced, which is making living something vaguely resembling a normal life a little bit easier. I mean, it's nowhere near what I'd like, but it's certainly getting a lot better.

And I can't help but wonder if this is, at least in part, due to the fact that I've ramped up the amount of protein I'm eating. I've never been a big protein eater - partially because I've never craved it and also because I was a lazy vegetarian/vegan. But these days, if I don't have protein forming a significant part of lunch and dinner, I'm a) famished and b)far more likely to have a seizure. And by protein, I mean meat. I've never craved meat in the way that I do these days and sadly my health is a bigger priority than my ethical standpoint. I'm sure I'll flip back to being most vegetarian someday, but if eating meat is making me healthier, I'm a happy girl.

My seizures have been fluctuating between small and annoying and large and terrifying recently - the dissociative side has certainly got worse, which isn't particularly enjoyable. Dissociation is sort of like a trance state - it's where my brain chooses to disconnect from reality and emotion and moves into what it thinks is a safe space. It's something that we all do on a daily basis to some extent - like when we autopilot our way home or when we don't hear someone calling our name because we're so immersed in a book. I went to see a psychiatrist the other day and she described it as my brain thinking it's being really helpful and protecting me, but being about as good at it as a 3 year old.

Which is where the progress comes in - I went for a psychiatric assessment the other day. I was terrified about it, but it turned out to be far less scary and far more helpful than I could ever had hoped. My Psychiatrist (Dr Fairley) seems to actually understand what's happening in my brain, which is a first. She talked about things in the same way as I do and didn't push me too hard. I'm hopefully going to be starting therapy (a hazy mix of psychotherapy and CBT with some other methods thrown in as and when) in a couple of months, which is incredible news. I've been left for so long with no help at all, that just knowing someone is going to be doing something is a massive relief.

Obviously, I know therapy isn't a quick fix. I'm potentially looking at something around a year before I'm "better" and even then, there's a possibility that I might not fully get over seizures, but I'm strong and determined and planning on working as hard as I possibly can to kick this shit.

For now though it's much of the same - trying to work out strategies to make seizures less draining for me and the people who look after me and trying to find ways of living as much of a normal life as possible. And filling all the time in between with adventures and meditation and grounding techniques and yoga and lifting weights. Generally, remembering to be the super strong badass that I know I am.

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.

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.

The Walls of Hermitage Road (aka Life with Non Epileptic Seizures)

So you may well have noticed, I've not really been around here much at all. If you follow me on Twitter, something you may well have noticed is a heck of a lot of frustrated tweets about being ill and having seizures. I haven't really had the chance to properly explain what exactly it is that's been going on to a lot of people, and I figure here is the easiest place to do it.

A couple of months ago, I was watching a film with my best friend and some other wonderful, lovely people. We'd been chilling out on Easter Monday, eating a copious amount of chocolate (thank to my friend Chris), playing Cranium and had settled down to watch a film. We'd partied pretty hard over the weekend, so decided a quiet, sober Monday was in order. There'd been some varnishing going on, which meant the place was pretty fumey, so we had a couple of windows open too. I was pretty happy and incredibly chilled. I was going back to work the next day after a couple of shitty weeks in which my mum had gone to hospital, we'd been told my sister had cancer (turns out she didn't... but that's another story for another time) and a few bits of my social life had got a bit stressful too.

Halfway through the film, I freaked out massively at a domestic abuse scene, and squeezed poor Jed's hand so hard I think I almost broke it. A bit later, I said I'd started to feel woozy. We figured it was the fumes and the weird tunnel scenes (we were watching Being John Malkovich if you're wondering). 5 minutes later, I collapsed dead weight onto Jed, fell to the floor and started having convulsions. Nothing like this had ever happened before, although thankfully we have a few epileptic friends, so the people with me knew the basics of how to deal with someone having a seizure and called an ambulance straight away. The only way I can describe the whole thing is as a fucking weird. I felt disconnected from reality. I was vaguely aware of what was going on, I didn't pass out, but even now, it's a fuzzy and quiet hazy memory, almost like I was incredibly drunk. I couldn't speak, even though I wanted to, and, quite understandably, I panicked. After 5 minutes of convulsions, and another 5 minutes of sheer panic, the ambulance arrived and did my obs. Everything was fine. Blood sugar normal, slight sinus arrhythmia to my ECG (which is a new thing), blood pressure perfect. I was still spaced out and not quite making sense so off to hospital we trotted, where I promptly had another, much smaller seizure and got taken into resus. The queue was horrendous, so I self discharged after feeling much better.
What followed was a week of other smaller seizures, eventually resulting in my doctor deciding I needed three weeks rest, sending me for an MRI scan and getting me fast tracked for Neurology. We were told to act as though it was epilepsy, but every doctor I saw seemed confused. At times, it felt like they thought I was putting it on. I was scared, frustrated and exhausted. Jed was an utter hero and looked after me pretty much 24/7. I started to see the warning signs for when I was about to have a seizure, and we successfully managed to stave off quite a few. Getting outside, breathing deeply and being reminded of where I am all helped. I managed to go I think 4 or 5 weeks without a seizure just by using these techniques.

Eventually, I got to see a neurologist. For the record South Londoners, Dr Cocco is amazing. Completely mad, a little tricky to understand but amazing. If you get him, know that you're in safe hands. I explained the whole thing again, with the slight dampened spirit of someone who's had to tell this story more times than they care for, and waited for him to laugh at me or to tell me there was nothing he could do because I was clearly making it all up (it might sound paranoid, but this is what happened last time I saw a neurologist). Instead, he asked me one question - "Have you ever been sexually abused?" It took me by surprise. Sadly, along with many other women I know, I have, and I went on to explain the various times and forms it took. He listened and then asked me another question "Aren't you wondering why I'm asking you this? After all, I'm a neurologist. This isn't my field."
I had been wondering, of course. I'd also been making the slow connection myself of the troubling domestic abuse scene and some of the things I'd been telling him. The next words that left him mouth were the most important words of all "I want you to know that you're not making these seizures up. They're completely real. It's not all in your head." I could have cried.

Dr Cocco went on to explain I'd been having something called Non Epileptic Seizures. There are a fair few names for these, with one of the common names for the condition itself being Non Epileptic Attack Disorder, or NEAD for short. It's a condition that not much is known about, other than the fact that unlike epilepsy, the seizures aren't caused by electrical impulses in the brain, but instead are a physical response to both physiological and psychological triggers. It's a condition that generally starts in early adulthood, is more common in women and can often affect people with a history of trauma. I repeat though - these are not psychosomatic or "pretend" seizures, nor are they just an extended form of panic attack. They're very much real. If I catch my warning signs early enough, quite often I can bring myself back round from one, but not always. Around 15-30 people in ever 100,000 have NEAD, and over half of people taken to hospital with suspected epilepsy are diagnosed with it.

The seizures are, as already suggested, slightly different from epileptic ones. For me, I have convulsions and rapid breathing, often accompanied by an inability to speak (although I can communicate. They're dissociative in nature, so I "space out" quite heavily before, during and after them - feeling completely distant and detached from things. After a seizure, it can take me a couple of days to feel properly "normal" again - I'm normally exhausted and aching, with a grim headache and crappy sleep.
The reason I've called this post The Wall of Hermitage Road is because that's where I feel like I've spent the bulk of my week. I had 8 seizures last week, which was both frustrating and tiring, so any walk to the shop or attempt to go back to work saw me spending a lot of time sitting on various walls along Hermitage Road trying to making sure I didn't have a seizure (or, in one case, having a seizure whilst being looked after by some lovely bin men).

For me, there's two important reasons for writing this somewhat rambly post - the first is to educate people about NEAD, and explain a little of what you can do if you're a friend who's likely to spend time with me and I end up having a seizure. The second is that I refuse to let this run my life - I don't cause or bring on my seizures, but I can certainly do things to help myself get as strong and healthy as possible.

So, first off: what can you do if you happen to be with me (or someone else with NEAD) whilst I'm having a seizure?

1. DO NOT CALL AN AMBULANCE - unless I do something that injures me or unless I communicate with you that this isn't a normal seizure. Wastes my time, wastes their time. If an ambulance does need to be called (for example if the seizure won't stop after an extended amount of time or if I'm injured), make sure they know it's a non-epileptic seizure.
2. Try to stay calm - as selfish as it sounds, having someone else panicking really doesn't help. Speaking to me in a calm and reassuring way will bring me round far quicker.
3. Make sure I'm safe and try to place a pillow or something soft under my head but don't hold me down. It hurts me and there's a high likelyhood it'll hurt you too. If you can, the recovery position is the safest way for me to lay one it's calmed down enough.
4. Talk to me about where I am, what I can see, what the day is, who I am, who you are... these all help. Afterwards, I might be a bit upset and will probably still not quite seem "with it". This is all normal - again, try to stay calm and talk to me. Do something to try and focus my attention. Let me stay in the recovery position. Talk to me about something that interests you - my friend Slinky once lay on the bed, stroking my arm and talking to me about cameras, processing methods and f-stops after a seizure. It was incredibly effective. 
5. Be aware of my triggers, and try to make them stop if they're near me. Sometimes, it can just be a perfectly normal situation and a seizure happens. Things I know trigger them include flashing or strobing lights, sudden loud noises (ie fire alarms) and two sets of conflicting noises (so someone singing whilst someone else is watching a loud film).

And what am I planning on doing? Mainly just lots of looking after myself - getting back into yoga practice, starting ballet classes, starting to meditate, hula hooping, going for a spa day (funds allowing...), staying away from stressful or triggering situations, eating more healthily... maybe running, although at the moment I'm a bit fearful of it. At the moment, it's frustrating because my seizures are impacting my work life and my social life. There's a fairly high chance I have to cancel on people if I make plans with them at the moment, because they're not stable enough to be fully under control. I had to cancel a holiday I was planning on taking because after 8 in a week, I'm not entirely certain heading in an aeroplane to another country is the best idea. Despite all of my frustration and my anger at my own body, I'm almost certain that I'll pull through and start to live life normally again. I'm fortunate enough to be surrounded by incredible friends and have a wonderfully supportive work place. Mainly what I want is to feel healthy and happy again. Any suggestions of other things I can do to make this happen are gratefully received :)

You can find more information about NEAD here or in this handy NHS booklet