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

Just a little note

... to let you know that I've fixed all the links on the recipe page again. My dot com url expired a while ago (and I have litterally no idea who the hell it was originally registered with, so I can't re-register it) and I've completely forgotten all of the recipe links were stored as sparkleandshade.com instead of .blogspot.com Also, I'm planning on picking up on blogging again. It'll be a little different, but then again, it wouldn't be Sparkle and Shade if I didn't go away for a while and come back with a slightly different tack. The recipes and rambles will stay, but there might be a bit more political blogging too (although I am currently toying with whether or not that stays here or goes into another blog). Hope you're all enjoying the wonderful summer sun! xx

Buy a gift Spa Day Review

A few weeks ago, an email popped into my inbox, asking me if I'd like to receive a voucher from Buy-A-Gift  for a Spa Day for Two. I, of course, jumped at the chance. My back is utterly screwed, and the thought of a lovely, calming massage was extremely welcome after a month of incessant stress and faff and difficulty. Spa Days, in general, freak me out a bit - I don't ever quite know what to do with myself - but massages are lovely.

The Buy-A-Gift process is wonderfully faff free. They send you a box with your voucher on, which you then activate online, presenting you with a list of places offering your treatment. One of the things I really like is that the vouchers are transferable - so say you buy someone a voucher for a spa day for two, but instead they decide they want a luxury spa day for one... they can transfer it. There's also the option to add money to your voucher to upgrade it, as well as retaining some if you swap for a cheaper treatment. Lovely idea, very easy to navigate site - brilliant. Not a bad word to say about them.

The spa experience itself wasn't really that great. We were at Bannatynes, Millbank. It's small and a bit scummy looking. It didn't feel clean and airy, it felt like we were trapped in a basement gym with tiny corridors, surly staff and a swimming pool full of agressive men (well, I say it felt like that... it was that). We didn't really stick around in the spa itself - there was nowhere to just sit and lounge (apart from one slightly broken looking lounger) so instead we just waited in the lounge, read the papers and drank free tea until my friend's treatment (I missed mine due to someone jumping in front of a train, and they were unable to rebook it or offer me any sort of compensation - not even a smile)

The conclusion? I'd most definitely use Buy-A-Gift again - I may well get my sister something from them for her next birthday as there's a huge range of options but Londoners, you'd do well to avoid the Millbank Bannatynes, unless an underground gym full of grumpy people is your scene. In which case, know yourselves out!