Jem and the Holograms, or, Why is Hollywood Messing With Me?

Jem and the Holograms was my favourite show as a kid. My absolute favourite. It wasn’t on that often, but when it was, I was completely enraptured. For those of you who are too young to remember it, or never caught it during its late eighties peak, here is what you missed:

So here’s what it was about, as best as I can remember. Jerrica is an orphan, her dad having recently died, leaving her in control of a record company. But, that record company isn’t doing too well, so, with the help of some magic earrings and a hot computer programme called Synergy, she becomes Jem – a huge amazing pop star! She has other orphans in her back up band, and they often went head to head in the charts against The Misfits, who were also signed to the record company I think? Anyway, it was all secret identities and cool songs and outfits and pink and sparkle. The songs were brilliant, and often were embedded within the show as real pop videos, complete with MTV style info in the bottom left of the screen. Glamour and glitter, fashion and fame. It was The Best.

So imagine my surprise when earlier today, I came across the trailer for the new Jem and the Holograms film:

Apart from the pink makeup… there’s not an awful lot here that looks like the cartoon I know and love. In fact, this film looks a little lame. Like a slightly more colourful lifetime movie about a youtube star who ‘blows up’ and maybe gets a little sidelined by fame? With a bit of romance? And Juliette Lewis being the Boss? Plus it all looks distinctly ‘small scale’ as in, no OTT music videos, no big style gigs, in fact, where is the music???

What I’m trying to say is: sure, this film looks ok. It’s probably completely fine. However it is most definitely not a Jem and the Holograms film.

Here’s what I think the producers et al have missed:

Jem is a freaking superhero. Ok, she doesn’t fly around the world solving crime or anything, but she does have a secret identity. Jerrica is Clark Kent, mild-mannered and tame, whilst Jem is Superman – the wild punk pop star. She’s aspirational. She represents everything an eighties child wanted to be, and after a few reruns, you could even sing along! She had a costume, and a slightly mystical mentor in the form of Synergy. She was my Justice League. She was my Avengers.

I suspect that everyone behind this film was so desperate for it to ‘make sense’ that they completely forgot what made the show fun and fantastic in the first place. But with the raft of superhero films out right now, would it have been so bad if the Jem film was more of a camp eighties throwback with killer hooks and killer heels? There’s room for it. Heck, if we can’t have a Black Widow film, then surely we can have a great one for Jem?

Here’s what I would have loved to have happened: Jerrica runs her father’s record label, which is sinking. She finds some magic earrings that unlocks her father’s top-secret project, Synergy. With the help of Synergy and the earrings, Jerrica finds that she can magically transform (yes, magically!) into the pop goddess Jem, who takes the charts by storm. She becomes a girl-powered viral superstar! But how can she balance all the glamour and fame with her business life and boyfriend? Can girlie have it all? Of course she can dammit! Plus The Misfits would be in there too, somewhere. Saving her father’s empire and inspiring millions, Jem becomes a camp cult classic, endearing and well-meaning, but also batshit crazy as hell. Imagine Lady Gaga with magic powers doing classic era Britney-style videos. And OMG the songs would be sensational – probably produced by Max Martin or something. Imagine the soundtrack. IMAGINE IT. Like, they would legit end up becoming number ones in the real life chart because they would be that good. The soundtrack would be the best selling soundtrack of all time, bigger even than the Romeo + Juliet one.

This is the film I wanted. And notice how closely it resembles the original cartoon? But of course, Hollywood didn’t ask me what to do with my treasured memories. They wanted to make something slightly grittier and real, about teenagers who have no idea what they’re doing with their life being manipulated by Big Business or something.

I wanted the glitziest, pinkest superhero movie ever to appear on an big screen. What we have appears to be something monumentally dismal and drab (but with a splodge of pink thrown in here and there for good measure). It makes me sad.

Come in Dazzler, you’re our only hope!

Dazzler by Byrne and Muthart 3

Politics and Me…

This Thursday will be the third general election I have voted in, and the first that I won’t be voting Liberal Democrat. But it occurs to me that I have never been as politically aware as I am now – its only been within the last six months that I’ve been awakened to the truth of our political system, and I’m hoping that I might be able to impart some of the knowledge that I’ve gained here.

The truth is that up until recently I probably knew more about America politics than British. If I was living in the States, I’d probably be a paid up member of the Democrat party. In the UK, the lines between left and right aren’t nearly so clear cut, which is why I’ve found politics so confusing for most of my life.

The reason that I voted Liberal Democrat twice probably has more to do with the fact that I have no idea what it means to be Labour or Conservative than because of Lib Dem policies. Although, in the last election, I was keen to support students and the promise of no increase in university fees. Being let down on that promise is why I won’t be voting Lib Dem again.

This year, I will be voting Labour – and here is why:

The Tories believe that you should keep most of the money you earn. You’ve worked hard for it, and it is yours. You will have to pay directly for more and more services with that earned money, and because you can do this, the public sector doesn’t need quite so much to keep going. In an ideal Conservative world, the economy thrives as people pump more and more of their earned money into businesses that provide the services you need. If you are rich, or planning on becoming rich, this system works. Business owners love this system, because they get to keep more and more of their profits. You pay for exclusive schooling because you can afford it, and you pay for private healthcare. I can understand how this works for many people, and why they like this system, but I believe that it is inherently flawed. In an economically competitive world, where some will become very rich, some will inevitably be very poor. And what happens to those people? How do they survive in a world where public services are depleted? A Conservative system is all about survival of the fittest, and a race for more and more wealth. You become a selfish member of society. Never mind anyone else, what about ME ME ME???

I believe that the more you earn, the more you should be paying to be a part of the bigger society. If you are lucky enough to be earning millions, then you should be paying your way to maintain and support the nation. You should be pleased to be able to help support those who aren’t doing as well as you. Wealth is a privilege, not a right. The taxes skimmed off the top of the rich go towards supporting public services, meaning the more the rich earn, the better off everybody will be. Better schools for everyone, better hospitals for everyone, and a general ethos of equality and wanting to help your fellow man. A Labour system acknowledges that some people will be poor, and that this isn’t necessarily their fault. You know what? Some people don’t want to be staggeringly rich. For some people – more than you would think – wealth doesn’t equal happiness. A vast amount of people in this country work to get by, and are perfectly fine not straining for more and more. Does this mean that their kids don’t deserve to go to good schools? Or if they have a heart attack, they aren’t entitled to quality healthcare? I believe that we can all work together to move forward as a nation, regardless of how much money we earn.

This is a brief and rather crude outline of left and right leaning economics. It may even be a little bit flawed – I’m not an expert, but after all the reading and the conversations I’ve had lately, I think I’ve got it mostly right (please feel free to comment and correct me!).

A Conservative government works brilliantly if you’re a business owner, an employer of people, or someone who likes luxury cars, two holidays a year and weekends away in the country. But not everybody is like this. I’m not so selfish. I like to think that when (if) I do become rich and famous from my writing, that I will want to pay a higher rate of tax, because I know that it would mean that I’m supporting those less well off than me. I would want to contribute to the greater good of society, and not be selfish with my earnings.

So there we are. I’m a raging leftie. I’m a poor, impoverished artist with a chronic health condition, who relies on the state for support. I wouldn’t go so far as to say I’m a socialist, but I don’t think that the pursuit of wealth is necessarily a motivating factor for me. In fact, when I come across people for whom money is everything, I find it quite an ugly trait.

This isn’t to say that I’m a fan of Miliband. To be perfectly honest, I actually warm to Clegg more than anyone, but we should all remember that we’re electing a party and not a person. We’re voting for an ideology – not a celebrity. And Conservative ideology is pretty damn ugly to me.

In a future Conservative world, the rich do get richer (which is great if you’re already rich!) but the poor get poorer. The gap between rich and poor gets wider. Those on the wrong side of the social tracks will always be struggling, and may never get to achieve their potential. This saddens me. I want a Labour government that supports me, and others like me, and if that means that the rich have to pay a smidgen more in tax then they should be thrilled to be rich enough to pay it! Pay it back to pay it forward.

I’ll finish this blog post by saying that I know that as they currently stand, our two main parties aren’t nearly as clear-cut as I’ve presented above. There are a vast number of complications and wider world problems that mean the waters between left and right become increasingly muddy. I wish it were simpler. I wish our politicians were honest, and answered our questions directly, and didn’t have such sketchy personalities. Plus there are other prescient issues, like immigration (definitely a good thing!), housing (we need more please!) and national independence (lets’s stay friends!) that have sway and influence away from the generalised party ideologies.

But there we have it. I’ll be voting Labour on Thursday, because I believe in the greater good, and because the astronomically rich in this country are getting off easy – making life inextricably harder for the poor.

Whoever you choose to vote for, please make sure you have your say. Make time on Thursday to actually physically vote – we may not feel like we have a say in this big scary world, but the truth is we do.

Vote, get involved, and have your say.

Me and My Walking Stick…

New development for me with regards to treating and managing my Postural Tachycardia Syndrome (PoTS)!

I have a walking stick!!!

The reasons for having my stick are threefold:

  1. It provides me with support when I come over giddy and faint. This doesn’t happen often in a normal day, but when I’m out and about in town and busy, these dizzy spells can make me feel rather unwell.
  2. It alerts other people around me to the fact that I have an invisible condition. When on the bus, or on the tube, or in any circumstance that I might find uncomfortable, people see me and are aware that all might not be what it seems.
  3. It reminds me that I need to pace myself. This is the most presient thing for me right now: I keep forgetting that something is wrong with me! Due to the nature of my illness, I may not feel unwell straight away – I tend to find that I’ll feel the effects of a busy day either that evening or the day after. Excess fatigue and hypersomnia are huge problems for me. The stick reminds me, as I’m out and about, that I need to take things easy, in the hope that I’ll feel better later on.

I’ll let you know if it makes any difference!

My Crazy Adventure with Protein World…

Well… this past week has been a little strange. If you’ve been following me on twitter or Facebook then you’ve probably seen a lot of this already, but I thought it would be a good idea to give you my version of events, and what I think about everything that’s happened since…

It started nearly two weeks ago, when I was on my way home from a hospital appointment (in everything that’s followed, I never mentioned my various health problems, as frankly, that has nothing to do with what happened. However, it does lend some context to how this all started for me). I was sitting opposite the Beach Body Ready advert, and to be honest, feeling a little bit crap about myself. The poster asks, provocatively, ‘Are you beach body ready?’ The answer the company no doubt wants is “no! I look crap! Quick, lets buy these dietary supplements to fix that!!!” My reaction was not that. The ad made me miserable. Having Postural Tachycardia Syndrome severely limits the amount of exercise I can do, and for me, causes excessive levels of fatigue. Coming to terms with this life-changing, chronic and incurable illness has not been easy. And I sat across from this ad for nearly an hour on the Northern line, on my way home to Edgware, feeling slowly more angry and wretched.

So when the train pulled in, once everyone had left the carriage, I went up to the advert and wrote “none of your effing business” in the yellow space provided:

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Not easy to see, but its definitely there!

I felt pretty good about what I had done. And to be honest, didn’t think much more of it after that!

I didn’t go on the tube for a few days, but when I did, I found myself sitting opposite the poster once more, and by this time, I felt pretty confident in what I was doing. A few people had shared the last photo, and I’d spoken to a lot of people about the ad. We all agreed that it was offensive and made us angry. So I did this:

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If my body is on a beach, then it is ready. Thank you very much.

This picture got picked up by the Vagenda people on twitter and made it into a Buzzfeed article. I became Buzzfeed famous!!! You can read the article HERE.

From this article, a producer from the Stephen Nolan show on BBC 5 Live got in touch and asked me to appear on the late night programme, discussing the advert with the head marketing honcho and guy behind the twitter account. I decided to prepare for this interview by consuming a rather large portion of chips:

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You can listen to the debate here:

 

Nothing much happened for the rest of the weekend, but then on Monday, IT ALL KICKED OFF!!!

Tweets happened, threats happened, and pretty much all of Monday was spent watching my timeline tick over with repeated demands for me to be arrested, followed by Protein World themselves referring to me as a “criminal” and an “extemist” and later, a “terrorist”.

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When one anonymous tweeter tried to shame me because I decided to put “criminal extremist” in my twitter profile description, I pointed out that just because someone calls me a unicorn, it doesn’t mean that I’m a unicorn. And then, so thrilled by my own sense of logic, I added ‘part-time unicorn’ to my twitter profile too. IMG_4355

And then this guy reported me to the police! I’m still waiting for them to come and knock on my door. But let me take this opportunity to say, publicly, that if I am arrested and fined (which is the worst thing that could happen here) then I’d ask for public contributions to pay, and then I’d donate anything and everything leftover to charities that deal principally in eating disorders and body dysmorphic issues. I hope that it does’t come to that, but there we are.

I’d like to say here, that I know that I have broken the law and committed vandalism, but I am proud of what I have done and would do it again in a heartbeat.

And yes I know that Protein World’s profits are substantially up, no doubt helped by my viral efforts. The fact is that I couldn’t care less about this company or how much money they make. All I wanted to do was to stop the next woman sitting across from that advert from feeling miserable. I wanted them to see the advert, and then see my comment, and then maybe, they’d think that they were OK. That’s it. No biggie.

Have I played right into the hands of this company? Maybe. I strongly suspect that they were hoping for this kind of outrage and viral attention, and I know that they’re now laughing all the way to the bank. Look at what they got out of it: mentions on the national news, in national newspapers, and discussions on radio programmes. You can’t buy that kind of publicity! To which I say, again, I don’t care. This company’s profits will go down as well as up. Customers will soon realise that the product is useless an unnecessarily expensive. That has nothing to do with me. What I did, twice, was to potentially make somebody’s day a little brighter, and to reinforce their sense of self and wellbeing.

To the people on twitter who have called me out for ‘fit-shaming’ (I know, I didn’t think it was a thing either!) I would say that never once have I drawn attention to anybody’s figure – mine nor the model’s. Thinking that this is all about being jealous of the way someone looks is wrong. You can feel body-negative whether you are a supermodel or not. Everybody has bad days, and you know what, it has nothing to do with what you look like.

The advert’s intention was to shame women into using their product. To which I have the following to say:

  1. Shame has never been a conducive way to get fit and lose weight. If you’re feeling bad about yourself, you’re much more likely to buy a bar of chocolate than join a gym. It’s a simple fact.
  2. The way to make women (or anyone!) get fitter and healthier is to inspire them, to appeal to their intelligence and sense of wellbeing. All carrots, no stick. When you feel good about yourself – no matter what you look like – you will want to look after yourself better.
  3. How Protein World thinks that their product is the key to health and fitness mystifies me. Eating less and doing more exercise is key – not investing in vitamin pills or other dietary supplements. In fact, vitamin pills and dietary supplements have recently come under fire for possibly increasing risk of cancer and heart disease. You can read about that HERE.

All of you reading this – we all have our flaws. Regardless of whether we are a swim-wear model or not. We are constantly bombarded with images of perfection, and fooled into thinking that the airbrushed images we see are somehow attainable or aspirational. The truth is that many of us could do with an improved lifestyle. I have an illness that severely limits what I can do right now, but I am working on it with doctors and other specialists. But just because I’m not at the best place I can be physically does not mean that I am ashamed of my body. This is how I look. It’s not going to be changing any time soon, much to my annoyance. If I want to go on the beach, all I need to be ready is a swimsuit and sunscreen. There is no magic pill that will make me better, which is what Protein World would have you believe.

I’m OK. And you are too.

The rest of them can deal with it.

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Why I Write…

I write because I find it nearly impossible to truly articulate my feelings in any other way.

I write because nothing compares to the satisfaction of other people reading and liking my work.

I write because love is far more elusive than the movies would have you believe.

I write because the real world is far too small and never good enough.

I write because I don’t believe in magic, or gods, or the soul. But in stories, all these things can exist in plenty.

I write because there aren’t enough sunny days.

I write because really, underneath it all, I might be sad.

I write because the world inside is far safer than the world outside.

I write because I have no other way of saying what I really want to say.

My Book Launch

Some girls dream about what their wedding day will be like, but for me, the dream has always been the book launch. And last week, it happened! What I thought I’d do for you here is tell you what things were like behind the scenes, and how it feels to be a newly published author!

Well, at the risk of defusing the tension far too quickly in this blog post, being a newly published author feels very similar to being a nearly published author. Except now, when people ask me what I’ve written, I can actually point them in the direction of book stores!!! Having my book finally out on the shelves is just amazing. To go from being a Waterstones bookseller to seeing my book on the Buy One Get One Half Price tables is a dream come true.

Last Monday (three days before my launch party) I went to see my bookseller pal Teresa at her branch of Waterstones on the Kings Road, London. And I got to do the signing thing!

This is me doing my first ever Waterstones book shop signing!

This is me doing my first ever Waterstones book shop signing!

After which I had to go and find somewhere to get my eyebrows tamed. Ladies and gents, but mostly ladies, if there is one thing I hate doing its plucking my eyebrows. I just let them get as unruly as I can take before I go and have them threaded or waxed. Which is how I found myself in Peter Jones in Sloane Square, getting tutted at by a lady with some fine string, who proceeded to moan at me for how red the areas around my eyebrows were getting during the treatment. Like that’s even my fault?! When I asked for a mirror afterwards so that I could put some correcting make up on, she barked “no make up for five hours after treatment!” so I promptly went to hide in the toilets whilst I applied considerable amount of concealer on the upper half of my face.

Flash forward to the day of the party…

I spent most of the morning in bed trying to sleep so that I’d have enough energy for staying up late (those who are unaware of my health drama, please check out the tab on POTS), but I just couldn’t rest. I was far too nervous/excited, and I was getting far too many tweet alerts celebrating my book birthday. After lunch I decided to paint my nails whilst watching a countdown of the best ever Disney songs on Sky. This was a very good decision on my part and I didn’t regret it.

My party nails!

My party nails!

When I finally got to Waterstones Piccadilly, at about 5pm, my first thoughts were with the cake. The cake had been ordered from Choccywoccydoodahs months before, and I was desperate to know 1) if it had arrived at Piccadilly safely, and 2) WHAT IT LOOKED LIKE. Seriously, they don’t tell you these things. You order the cake, and you kinda know what to expect, but then you just have to wait it out until party day before you even get to see it. Well, fortunately, I was not disappointed:

CAKE!!!

CAKE!!!

Look at it. LOOK AT IT. It is quite possibly the most amazing cake IN THE WORLD!!! It’s made out of chocolate sponge with white truffle cream filling, and decorated entirely with chocolate. Yes, that’s right: ENTIRELY WITH CHOCOLATE. The fantastic guys at Choccywoccydoodahs had replicated the cover art (designed by Kate Grove, illustrated by John Riordan) perfectly, and made me a solid chocolate Othergirl. Right now, as I type, the chocolate book is being mounted and sealed in a moisture proof box frame, so that I can keep it forever. FOREVER.

Next up, let’s talk about my publishers, and how fabulous they looked:

Myself with editors Chloe and Charlie!

Myself with editors Chloe and Charlie!

How to tell if your publishers like you: THEY DRESS UP IN SPANDEX FOR YOUR LAUNCH PARTY.

Charlie had only flown in from the Bologna book fair that day, and looked amazing as an Incredible, whilst Chloe was doing her bit for genderswap by representing as a lady-Thor. And yes, that’s me in a cape. A FRIGGING SHINY CAPE. It was rented from Angels and had tiny tear in the back, but I’m hoping nobody noticed…

Being surrounded by every single person you care about in the word, all together in one room, is totally overwhelming. I’m not sure that there are many moments in life when you get to experience that, but let me tell you, its wonderful. I had almost all my extended family in the room, plus friends from school, friends from university, friends from Waterstones, and even some of the friends I’ve met whilst working copious hours in Edgware Starbucks! Plus there were bloggers, other booksellers, writers and librarians there to wish me well. It was amazing. If you were there, then thank your for being there, it meant a lot. If I know you and you weren’t there, well then trust me, I wish you were (but Waterstones Piccadilly had a cap on the numbers).

My signiture changed dramatically over the course of the evening. I’ve been told to try and perfect a special signiture just for signing books, but I really haven’t figured that out yet. So some people got legible versions of my name, whilst others got the letter ‘N’ followed by an intelligable squiggle. But between my hands shaking and struggling to remember how to spell people’s names, I did the best I could!

Signing for one of my best pals Laura Jane, and for my cousin Gina!

Signing for one of my best pals Laura Jane, and for my cousin Gina!

Finally, let’s talk about how standing up and signing signitures and generally being in a state of stressed-excitement for a few solid hours was probably the worst thing I could possibly do for my health. My resting heart rate sits at about 110 at the best of times, and that plus my high blood pressure and my POTS diagnosis is why I can’t do exercise at the moment, so basically I was running on endorphins and adrenaline for a good portion of the night. When I finally managed to sit down at about 9pm, it transpired that standing up again was not something that was going to happen easily. I felt terrible, and had all the signs of extreme fatigue. Put it this way, for someone with POTS just the process of going from sitting to standing puts 3x the amount of strain on the heart than for a normal person. So by the end of the party I wasn’t just tired, but quite unwell. I couldn’t stand without seeing stars, and as my Mum was to find out soon after, I became incredible irritable whenever I had to move somewhere. I crashed out that night (a Thursday) and didn’t really get out of bed until after midday on the Saturday.

But it was was worth it. Every moment of discomfort and palpitations was completely and utterly worth it to be able to celebrate Othergirl with everyone.

So there we are. My book is out, you can buy it in shops or on the online retailer of your choice. I hope you like it, and if its not for you, oh well! There are plenty of other books in the sea, and I hope that you liked this blog post at least?

Much love and high fives,

Nicole

One Week to Go!!!

I can not believe that there is just one week left until the publication of Othergirl. I was told that the gap between signing the deal and publication date would go by in a flash… but this is crazy! After dreaming about this my entire life, finally next week I will be a published author. WOAH.

So I thought I’d take this opportunity to tell you a bit about the background of Othergirl, and why I wrote it.

The truth is, that I’m the other girl. Always was, and in some ways, always will be. Never the prettiest, never the most popular… I always felt like I had to struggle to get people to like me, and had to work that little bit harder to get what I thought came naturally to a lot of people. I was the wingman when my friend wanted to hook up with the boy she’d been flirting with for ages. I went shopping with friends to find cool clothes, knowing that I was too fat or too tall to fit into anything they were trying. Ditto with shoes – I have size 10 feet. So whilst my friends would sit around in shops trying heels on, I would just have to stand there, or I’d wander to the mens section and wonder what ugly flats could possibly pass for unisex. Boys were never interested in me, the cool kids thought I was weird, and the weird kids intimidated me. My teenage years weren’t easy.

But it was only after I’d grown up a bit that I realised I wasn’t alone. Turns out, that everybody feels this way at some point or another. There’s always someone nearby who’s better than us, or bolder than us, or achieving the dreams that we’ve strived for. None of us are alone.

When I decided that I wanted to write a book that explored the idea of being the other girl, making one of the characters a superhero seemed like a natural and playful choice. I wanted this book to be lively and fun, and what better way to explore this scenario: what if your best friend was not only prettier and more popular than you? What if she could also fly?!

This was the premise that the entire book was then set on. Then I realised that I wanted to write a book about female friendships, and finding your personal strength, and coming of age in a world that’s a little bit out of your control. I also wanted to make sure that the book wasn’t too serious. Comic books are obviously a major influence, and I really wanted to invoke the feel of a comic book: fast paced, brightly coloured, exciting and fun, with something in there for younger readers as well as older ones.

And now here we are: one week to go, and Othergirl will be let loose in bookstores and libraries across the country! For those waiting to read it, I hope you like it. This book is written specifically for every guy and girl who has felt like the other one. I know that there are loads of you out there! For those going through it right now, there’s one thing I can definitely promise you: one day you will find your people, and they will see you for being as awesome as you really are. It takes time to learn how to be happy with yourself, so be patient, and enjoy discovering what makes you you. I firmly believe that everybody has a secret superpower, and if you haven’t discovered yours yet, then don’t panic! You’ll find it soon, I promise!

 

Let’s Talk About Sleep Hygiene…

I know what you’re thinking – what the hell is sleep hygiene??? It sounds kind of disgusting…

Well actually, sleep hygiene is the term given for your nightly habits and the way you fall asleep. There’s good sleep hygiene: reading before bed, closing the blinds, wearing an eye mask etc. And there’s bad sleep hygiene: falling asleep with the telly on, checking your phone or iPad in bed etc etc etc

I will admit here and now that my sleep hygiene is poor. Which may come as a surprise to many of you seeing as I have this crazy tendency to need a bananas amount of sleep. You’d think I’d have my sleep routine sussed, right? But I’ve realised over the past week or two, since getting my POTs diagnosis, that some of my bad habits are connected to my health. Falling asleep with the TV on is my way of distracting myself from the palpitations I get at night. Well, now I know what’s behind those palpitations, and I can stop being scared of them!

Hypersomnia is probably the most debilitating aspect of having POTs for me, and now I know that it’s because of 2 things: 1) just doing ordinary day to day things tires me out more than it should and 2) I have a crazy pulse rate and blood pressure even when I’m asleep, meaning that my sleep quality is often poor. I may be sleeping for hours and hours and hours, but I’m never getting good, quality sleep, which means that I’m just going to be endlessly tired during the day. Add to this that sometimes just walking up a flight of stairs is nearly enough to knock me out, and you can see why hypersomnia is an issue. I’m constantly trying to catch up on myself, and will always, always be sleepy.

So, in an effort to make myself feel better, I’m trying to improve my sleep hygiene. It’s not a miracle cure for my POTs, but I’m hoping that alongside other changes, like diet and starting physiotherapy, it may make it more manageable. Here’s are my new sleep rules:

  • No telly in the bedroom before bed. Likewise, no iPad. If I want to read, it has to be a proper book (the light from iPad/computer screens is very ‘activating’ for the brain).
  • I’m getting black-out blinds installed so that the garden light can’t disturb me in the middle of the night.
  • I’m taking Valerian extract in pill form with a glass of milk before bed (along with my blood pressure pills). It’s a natural, herbal remedy to improve sleep quality.
  • No food before bed (I’m terrible at night time snacking, but I am putting a stop to it)
  • I’m using an aromatherapy mist spray on my pillow and pyjamas before I sleep. It smells of lavender and geranium and should help keep my pulse rate down.
  • If I struggle with palpitations, then instead of turning the telly on to distract me, I will meditate instead (or just read until I get tired and relax).
  • I’m also monitoring my sleep with an app called ‘Sleep Cycle’. I’m not convinced that iPhone sleep apps really get any good, medical quality data, but it’s still an interesting thing to do to see if my sleep does improve over time.
  • Setting my alarm for the same time every morning, no matter if its the weekend or not.

These new measures won’t make a difference overnight. I will be trying this new improved sleep routine for at least a month, and using the Sleep Cycle app to monitor how it goes.

I did my first night under the new rules last night, and was pleasantly surprised at how well I managed to wake up this morning. I actually work up just before my alarm, and felt surprisingly well rested! But then I had breakfast, and came over all tired again, and stayed in bed until midday. It’s ok, I know things aren’t going to improve straight away, and I have lots of other things I need to do to help counter the POTs, but I’m hoping that improving my sleep hygiene may soon be a solid link in the chain of managing my condition.

I’m open to advice if anyone has any, and I’ll keep you posted over how I’m doing!

x

My Twitter Break…

Hello everyone,

I am back in the land of the living after spending much of the last few weeks scrambling through my second novel, which is now sitting on the desk of my editor, awaiting the red pen of doom. The last week in particular, as life crept towards my deadline, was particularly anxiety inducing, so I decided to take the week off twitter. And guess what? I got everything done! And I found that I wasn’t nearly as anxious as I usually am!

Why is this? Why would twitter, a computer game cleverly disguised as a social media device (I will one day attain the prize of the blue tick dammit!) make me go so crazy?

The truth is this: one of my big problems is that I compare myself to other people. This is something we all do in some form or another, but when I’m feeling a little bit emotionally fragile, this comparison problem becomes heightened and problematic. I compare myself to other people and find myself wanting. I am never good enough… I am failing… and everyone else is better than me. This is a common symptom of depression and generalised anxiety disorder. The trick in coping with this is to not let it get on top of you. Standing back and rationally evaluating the situation – easier said than done, I know, but I also know that I can help myself out of the slump as well. By taking away twitter from my life, I took away most of those annoying, negative voices. And I felt much better about it. I wasn’t worrying about what book I wasn’t reading, or how many words I hadn’t written, and what fandom I was feeling left out from. I was free!

Saying all this though, I do love twitter. I love that its become a part of my ‘office’ experience, and despite the loneliness of the job I do, I can still be a social animal. I love that it leads me to exciting places and new ideas. I love that I can personally connect with people who live nowhere near me, and who I’ve never met.

And trust me, even though I was away from everyone, that didn’t stop me collating the things that I would have talked about had I been running free through the twitter timelines. So, just in case you were wondering (and I realise that many of you are not wondering. Indeed, I realise that many of you probably didn’t even notice that I took an online break), here are all the things I wanted to tweet with you about last week:

  • More ranting about how amazing Jupiter Ascending is
  • Deciding to pick A Game of Thrones back up (I finished Book 1!)
  • Seeing the trailer for new series of Game of Thrones on Sky and getting FEELINGS.
  • The Oscars
  • Ed Sheeran and Taylor Swift KILLING IT at The Brits
  • Madonna nearly getting killed at The Brits
  • Wolf Hall
  • Tina Fey and the amazingness that is her book Bossypants
  • Improv Classes, and the fact that I want to start them
  • That UKIP programme on the BBC
  • Leonard Nimoy
  • The Dress (white and gold forever my peeps)
  • Llama Drama
  • My brother starting to read my book
  • Being obsessed with the Tegan and Sara radio station on Spotify
  • The Return of Runaways

So there we are, and now you know. Despite not talking about them publicly, these are all the things I was intensely thinking about last week (when I wasn’t thinking about/crying over my new novel).

And now that the new novel has been handed in, I have a chance to let myself properly worry about the next big milestone: LESS THAN A MONTH UNTIL OTHERGIRL IS PUBLISHED!!! AAAARRRRGGGGHHHH!!!!!

x

Hypersomnia and Me

Ok, first off a disclaimer: I’m writing this today as a therapeutic experiment, to see if writing gets me out of the super-complex funk I’m in right now. The reason(s) for my funk are many and exhausting. First off, the obvious: book anxiety. Not just the first book, which is officially published soon, but also the sequel, of which a draft should be ready to send to my publishers soon. For some bizarre reason I’ve decided to start the second draft before I’ve even finished the first. I don’t know. Secondly, job anxiety: that fabulous Arts Council grant I had last year? Well this year I’m flying solo. Which means that I really need to start earning money soon. Thirdly, and most irritatingly: my health, which features the delightful words ‘chronic’ and ‘incurable’.

It’s reason number three that I want to talk about today, because it’s the only thing I can’t do anything about. I can apply for jobs, and I can stay up until midnight on my book, but my health? My health is ridiculous.

The goods news is that I think I’ve figured out what’s wrong with me. I’ve had Idiopathic Hypersomnia for the last seven/eight years (it’s hard to ascertain how long I’ve had it, because it crept up on me rather slowly), with the new symptoms of high blood pressure and a chronic rapid heart rate coming in about a year and a half ago. Cardiology thought I had an endocrine problem, and endocrinology thought I had a neurological problem, and now I’m back to seeing the neurologist who I originally saw for my sleepiness. The experts have come full circle, and the one thing that everyone agrees upon is that there is definitely something wrong with me. Here’s what I think is happening: Idiopathic Hypersomnia is an incredibly rare disorder that hasn’t been researched too much. Because I’ve been living with it untreated for so long, I think the rest of my body is breaking down on me. You know how astronauts who spend months in space have all these problems because they’ve not had to work their bones and muscles for such a long time? I think I’ve got that. I think that my life style is so unbelievably sedentary that I’ve given myself a neurological heart condition. Have a look at the other features of my illness: exercise intolerance (it’s a thing!), extreme muscle weakness (especially in the legs), plus a hefty dose of anxiety too. All these things can be explained by me sleeping too much. Spending half my life in bed is destroying my body – who would have thought?!

So surely the answer is simple: GET OUT OF BED AND MOVE GODAMMIT.

Except that its nowhere near as easy as that. Firstly, there’s the chronic fatigue to deal with, and then there’s the fact that I am so ridiculously unfit that sometimes even a gentle walk to the bottom of my road is enough to do me in. It’s not easy. Then there’s the mental thing, the depression and the anxiety and all those other things that fly about your brain stopping you from doing stuff, even when you know that all that stuff is good for you.

In case you don’t know, this is what my life is like right now: you know how when you were young and spritely you used to go out on benders a few nights in a row, and then need a day of rest to catch up on your sleep? I need those kind of days twice a week, just for living a normal life. Twice a week I let myself get all the sleep I need, which usually results in me getting up after about 20 hours. Then I’m awake for a bit (but I’m not really awake. I’m groggy and ‘hungover’ and really no good to anyone) and then I go back to bed for another ten hours or so until the next morning. This is my life, twice a week. And it kind of allows me to live a normal life on the days in between. But often I’m still tired after a sleep day. My muscles are weak, and my blood pressure does something funny meaning I’m prone to faint. I’m what you would call ‘tired’ or ‘fatigued’ although to many people it looks a bit like laziness. I’m sure there’s a touch of laziness in there too, but after a 30-odd hour nap I’m pretty bummed out. I’d dare you not to be.

Until I got into this routine of voluntary hibernation, I used to try and live like a normal person. As in, I used to try and get up every day. And man, where those crazy times! After about a week, I’d start to experience the effects of sleep deprivation: irritation, moodiness, a mild temperature with other flu-like symptoms, and hallucinations (those were NOT FUN). To be honest, I haven’t tried to keep myself awake every day for a while. Partly this is down to not having a full time job, so I literally have the time to nap whenever I like, and partly is this down to the fact that it is really, really hard for me to stay awake. Sleep deprivation symptoms are horrific, and give me their own special form of depression and anxiety.

I’m in my particular funk right now because I recently found THIS article.

I was close to tears when I read it. I found it difficult to eat my dinner because my hands were shaking so much it was tricky holding a knife and fork. For the first time, I’d seen me in a popular news article. I wasn’t going out of my mind, there are others like me, and there might be some answers out there. So why am I blue now? Surely this is all a good thing? Well, because I’m not sure that the NHS covers the kind of treatment that I might need, because its still all so theoretical and expensive. I don’t even know if there are any doctors in the UK looking at this condition to this extent. I might be a lost cause, medicine wise.

But here’s the thing I’ve become convinced of: that if I could get to the bottom of my Idiopathic Hypersomnia and find a better way to manage it, then I can start getting better. I can lose weight, I can get fit, and I can solve all the other problems that are plaguing my body. I’m convinced that my hypersomnia is the key. And it drives me mad that I can’t do anything about it right now. My next appointment with my neurologist is in the summer. It’s hard not to feel depressed when you feel like your life is slipping away from you, that your body is decaying and getting worse, and that time is going by far too quickly.

Please don’t read this and feel sorry for me. Those of you that know me know that I’m a bubbly, extroverted thing who likes to be around people and be happy. For the most part, I am. I’m doing what I want to do, writing books, and I’m fortunate to be so close to my family. There are lots of you out there who are sympathetic, and that means a lot. I’m also connecting with other sufferers on Facebook, which is strangely wonderful. I don’t want to be embarrassed about my condition, and I don’t want to hide. Maybe sharing my experience will help somebody else, and I know that writing it all down like this definitely helps me cope with it all mentally.

If anyone has questions, I’d be more than happy to answer them, either below in the comments or over on twitter.

In the mean time, hugs and high fives guys!

x