M.E In The News

I woke up today (after sleeping in late, something which has been creeping back into my habits lately!) to find that there is an M.E story doing the rounds on the web, and so I thought I should blog for the occasion! The article can be found on the BBC website via the link below, please take a read.

Chronic Fatigue Syndrome "affects one in 100 pupils"

"A study following 2,855 pupils at three schools, published in the online journal BMJ Open, found 28 missed school with chronic fatigue syndrome."

"The researchers looked at every pupil between the age of 11 and 16 at three secondary schools in Bath. The 461 pupils who were absent for at least a day a week in a six-week term were investigated further."

We already know that M.E/CFS affects around 25,000 young people in the UK, which works out at around one student per secondary school. This is something that doesn't come as a surprise to me, and from my own personal experience I've found myself being someone who attends a school where somebody else suffers from M.E/CFS as well as myself, and through speaking to teachers I became aware of previous students that had attended the school who had suffered from the illness, too.

As for the figures about students who are absent from school - again, I'm not surprised. After all, that was me 5 years ago. Attending school whilst having M.E is one of the most difficult things I had to do in my life and one of the toughest periods of my illness so far. Many students who have M.E will be unable to attend full time; I myself went through several attempts at part time schooling, the most being 2 hours per day and the least being 5 hours per week. Of course there were times where attending school at all was completely impossible, and so there were months, literally, where I wasn't in school at all. Eventually in Year 11 I was given a home tutor to complete my education as attending school became too much for me.

Battling the symptoms of M.E every day is hard enough, but school presents all kinds of issues on top of that. The daily symptoms of crippling fatigue, muscle weakness and pain, joint pain, headaches and sore throats are combined with the struggles of keeping up with peers, in an attempt to live a "normal" life. With M.E sufferers missing large chunks of school through illness then it is easy to get behind, meaning time spent at school has to be subsidised with catching up on all the work you've already missed, as well as battling to stay on top of the current workload. On top of that, schools are a hotbed of germs and bugs, and with many people with M.E suffering from low immune systems, one cold caught from a schoolmate can be enough to set you back weeks if not months. For me, walking around the school building became increasingly difficult, and during my time at 6th form I would often find myself coming home only for my legs to give way from underneath me after a mere hour at school.

So much more research needs to be done into this illness, as more and more people become aware of the wide reaching consequences living with M.E comes with. Missing out on school during your teenage years can have a huge effect on people, not only from an educational point of view but a social one as well. School is where we make friends, or where we see out existing friends on a regular basis. M.E is an extremely isolating condition, with many sufferers becoming housebound and at worst bedbound. This is no existence for a teenager, and I hope people will see the news today and realise that we need to be doing more to help these people - not cutting funding and leaving sufferers to deal with their illness on their own. On top of that, in light of these figures then I hope schools themselves will look into this illness more and put in place plans of action for M.E patients. Teachers and school nurses should be educated and fellow students need to be supportive.

I'd urge anyone who is struggling with school whilst living with M.E to contact the Association of Young People with M.E for help and support - details can be found at http://www.ayme.org.uk/

Thank you,

Sarah x

Winning

Today marked the first day of officially validating your NaNoWriMo word count, so I can now post this as an officially verified winner! They even added an extra ten words to my word count once I'd validated, cheers all round. So now I've printed out my winner's certificate and added a winner's t-shirt to my Christmas list, what does the future hold? Have I caught the writing bug? Will I be signing up next year?

I can safely say that I enjoyed the experience, which was probably down to the fact I went in with such low expectations and came out with a 50k novel. I've dabbled in writing before now, but never to this extent and it certainly made me consider doing more writing in the future. It also reassured me about going on to study English someday in the future which has become an ambition of mine recently. Plus, I've already started planning out the sequel to this story, as well as beginning the editing process of my NaNo novel. Oh and I've started an entirely new story, too! So it's been a positive experience overall.

Of course I have the advantage of not having an awful lot going on in my life at the moment, so who knows whether I'll have the time/energy/opportunity to be as successful next year, but I'll certainly be giving it a go!

Writing is a mind field of a profession where if I'm to take it seriously, then I have to prepare myself for disappointment. But for now I'm just going to enjoy writing as a hobby and enjoy crafting something I can be proud of at the end of the process. Already I'm proud of the characters I have created, the story that ended up just how I wanted and the amount of words on the page. And I've done all this whilst battling M.E symptoms which makes the achievement all the more staggering for me.

If you haven't validated your word count yet then do it now! :) just go to the "edit your novel" option and click the link.

I can't think of a thing worth sharing right now so I might edit one in later, shh ;)

Until next time,

Sarah x

NaNoWriMo - I'm done!

So I promised to blog about my progress during NaNoWriMo and I didn't. Well, that paid off because today I passed the 50k word count at finished my novel! I'm sure I'll document my experience more fully in blog posts to come but I thought I'd note down some of the things I have learnt on the way.

1. I can write 50k words in 15 days, who knew?!
2. Planning my chapters was a complete waste of time. I went off chapter plan on day one and didn't even look at it the rest of the time.
3. Characters are the most important thing. If I hadn't spent the time and effort thinking about my characters that I did, I would have gotten nowhere.
4. Music is the best inspiration. I downloaded Spofity mid-NaNo and found some songs that helped spur me on.
5. Writing that much is going to send your brain into overload. At one point I spelt gesture with a 'j'. I'm still embarassed.
6. Writing is fun! So much fun. I can't wait to get stuck into more stories. I hope I never lose the love I've found for writing during this month.

I'm sure there are loads more things to say about this month, but I'm too frazzled to remember them. If you haven't given NaNoWriMo a look before and are wondering what it's all about, then I'd recommend it to anyone. It's a great experience. So my ultimate "thing worth sharing" is this wonderful website.

Until next time,

Sarah x 

What I Learnt From Twitter

Most people who know me will know I love Twitter, and so over a year after joining, I have decided to dedicate a whole blog to the things I have learnt since joining Twitter.


I'll start with the time before I actually joined. Twitter was one of those things that very quickly became something you couldn't avoid. It burrowed its way into popular culture, aided by many "celebs" along the way. I think I first became aware of the site when Stephen Fry discussed it with Jonathan Ross on his BBC talk show. It wasn't enough to peak my interest though, really. Over the following months it would be forced upon me, through the medium of radio. Radio 1 was a station I (used to, anyway) listen to a lot, and as the big shows (Chris Moyles for instance) started to utilise its power, I became curious. Well, before curious I became angry. Many of the show's features were using twitter, despite the minute proportion of the show's audience that actually used the site, leaving to a lot of feeling left out if were to even remotely understand what it was they were talking about. "Trending topics" came up more and more frequently, and celebrity interviews would be littered with "are you on twitter?" and the giving out and sharing of twitter handles, who has more followers etc etc. Then the Twitter boom took off, and you couldn't watch a TV show without them mentioning Twitter, listen to a podcast without them mentioning their twitter, or keep up to date with anything pop culture without having Twitter. And so after speaking to a few friends and seeing whether it was worth the fuss, I, too, joined Twitter.


At first I started out with a small number of followers, who were just my friends, and I protected my tweets. I saw my page as a simple version of Facebook, where I could update my thoughts and feelings, maybe slightly more frequently than I do my Facebook status, which I rarely do to this day. Having a limited audience made it more cosy, a friendlier atmosphere than Facebook where anyone and everyone can see what you're up to these days. I'd found plenty of people to follow, a lot of them related to Harry Potter, as the fan sites and film stars were some of the accounts I most wanted to follow before joining. And I started enjoying the site. Trending topics became my way of keeping up with breaking news, and I came across new websites/artists/people whose tweets interested me, and my following count started to grow. But it wasn't until May of this year that I really started to see the benefits of Twitter, and how it can be used for good.

As it was well documented on this very blog, M.E Awareness Week took place during May, as it does every year. This was the first M.E Awareness Week where I had Twitter at my disposal as a tool for raising awareness and promoting good causes. I chose to unprotect my tweets so that the public could read them, therefore spreading the message even wider. It also provided the ability for people to retweet my tweets (something not available when tweets are protected) as well as being able to communicate with people who aren't following me (again, not available when tweets are protected). I, and others, had taken on the task of sharing round this M.E Awareness video made by the lovely Daisy. How would we get the video out there? Well, by tweeting celebrities of course! If we could get this message to appear on the profiles of people with tens, if not thousands of followers, then we were exposing that video to a huge audience. Of course not all of them are going to click the link, but certainly a good proportion of them might show some interest. As you can see by the number of views on that video (now over 9000 which is phenomenal) the video was a huge success, and a large part of that is down to Twitter, the the celebs who were kind enough to retweet mine, and other people's tweets.

Straight after awareness week, I protected my tweets again. "Online safety!" called the little voice inside my head, but I had witnessed the power of Twitter, and that played on my mind for some time. Now I have my tweets unprotected, and find I get so much more enjoyment out of Twitter. I can interact with more people, which involves speaking to people all over the world. I can get my voice heard, people occasionally retweet my tweets (who knew I had anything of value to say?!) and so my message was spread further. I can talk and communicate with people who are similar to me, and I find all sorts of interesting people through looking at my followers.

There are downsides to Twitter, however, as with all things in life. These days it is near impossible to log on and take a read through the trending topics without seeing something that has been put there by a select group of fans. These are usually teenage fans, those who idolise singers/actors etc to the point of hysteria. I'm not saying all fans of these people are awful, you can't paint everyone with the same brush, but on the whole, some of the trending topics can seem immature and frankly annoying. I think back to the time I was a teenager, and I certainly idolised a few people in my time. At secondary school, the inside of my locker was plastered with pictures of Avril Lavigne. After that it was Green Day, whose lyrics were scribbled all over my pencil case with pride. Of course in those days, we didn't have social networking (I know, unbelievable! How did we ever cope?!) and so doodling on your school books or wearing a band t-shirt, and of course annoying your friends in person by referencing said band/actor in every conversation, were the ways to express yourself. It's hard to say whether, if I'd had Twitter at the time, I would have used it to the same ends as teenage fans today, maybe I would have. But if I bring it back to an Internet safety issue, would my parents have let me set up a Twitter page, open to the public, dedicated to a band I loved? Some of these kids who are gathering hundreds, if not thousands of followers, through promoting and adoring some teenage heartthrob, are so young! Anybody could be following them or contacting them. The thought does scare me a little.

Back to trending topics. There are so many better ways for the power of them to be harnessed than declaring love for some boy band. When I first joined, you could look there and see the breaking news stories of the day, from all over the world. They can be the first point of information for protests, government uprisings in other countries, natural disasters the world is just coming to learn about. All of these things seem so much more important than who is fitter than who, or what so and so had for breakfast.

So, what have I learnt from Twitter? That you can use it as a platform for good, and that there are some truly awesome people in the world. That is is one of the best ways to access information, whether it be news or updates about your friends or favourite celebrities. That you can raise awareness of important issues, and get global attention. And also, that teenagers in great numbers are a force to be reckoned with.

I really would recommend anyone who is stuck in the dark ages and therefore doesn't have a Twitter profile, to get one and get involved. Don't want the world knowing your business or worried about safety online? Protect your tweets! Tell your kids to protect their tweets! Block creepy people! The great thing about Twitter is that even if you don't have a great deal to say, other people do, and if you're not following them then you really should be. Look up your favourite singers, politicians, sportsmen and women, news channels, podcasts, websites, shops or people interested in the same things as you and learn what they have to say.

My "thing worth sharing" is http://www.podcastawards.com/ because you should all go and vote for Hogwarts Radio in the Entertainment catergory, yes you should! Also I added a Twitter follow button to this blog, so if you like what you see then you can more random bitesize chunks of my ramblings by following me there :)

Until next time,

Sarah x

Planning, Planning, Planning

So today I'm sitting here, not able to do a lot besides chill in bed with my laptop due to a dodgy hip. Whether it's the cold weather, too much walking, too little walking or just plain M.E being mysterious that has caused the pain and discomfort, I'm not sure. I get a fair bit of trouble with my joints, pain, weakness etc so I'm not too worried about it, it's just a bit of an inconvenience.

It does, however, give me time to blog! Hurrah. And so I thought I'd update on how my NaNoWriMo planning is going so far. The answer is surprising okay! I have a lot of plot information written down, as well as details about my characters. I've drawn some maps of locations used in my story, and have the chapters outlined.

Chapter outlining turned out to be the hardest part. I know I have a lot of specific events in my story that will have dedicated chapters, but when I first tried to plan each chapter I stalled at a total of eleven chapters, which isn't nearly enough. Following advice from others, I've set myself a goal of thirty chapters so I can write a chapter a day, or I can hope to at least. I have one thing on my side, and that is that I know the ending of my story. I've had this idea for a long time but have stalled when attempting to write it down, so I'm itching for November to begin so I can get going!

Of course this could all change come November. I'm still facing the problem of worrying my health will get in the way. If it does, then my health comes first and I won't finish. It's not a big deal, I'm only really doing this for fun after all! But who knows whether my weak wrists or difficulty with concentration will just make things too hard, time will tell.

One thing I am trying to do in the build up is make sure I'm writing each day, so this can be my writing for today. Hey, it's not particularly interesting writing, but it's practice at typing which is one thing I'm going to need. I also picked up a copy of the Guardian newspaper today, well my parents did, as they do every week. Included is a brilliant "How to Write Fiction" pull out section, which has some really wonderful trips and hints for writing, and includes several writing exercises which I will certainly be giving a go.

One thing I'm getting from NaNoWriMo before it's even started is the great sense of community. I've had a quick browse of the forums, where everybody seems friendly and supportive. I'm happy to share support with fellow participants on Twitter, so anybody who stumbles across this blog can find me at http://twitter.com/thatsizgirl I'll probably add a little Twitter widget to my blog as well for anyone who wants to keep track of my progress.

I'm entering this project as a complete novice writer really. It's something I enjoy, but not something I have any real formal experience with. My qualifications are limited (albeit through no fault of my own) but what better way of learning a craft than throwing yourself in at the deep end? I hope to add a few updates to my progress on this blog, I'm certainly excited about it. I just hope my enthusiasm will last until November!

For a "thing worth sharing" I have to direct people to BBC Iplayer to look up Stephen Fry's brilliant show on language Planet Word. As an ex-English Language student, this show has reignited my love of all things language, and it's a must watch for everybody. Episode three was hilarious so I shall link to that, it's also the most recent - http://www.bbc.co.uk/i/b01614w9/

Until next time!

Sarah x

Update - NaNoWriMo and Other Stuff.

I am a bad blogger, a really bad blogger.

Like, really bad.

I've spent my summer trying to find the perfect balance between not staying in when I have the energy to go out, and not going out too much. I'm not going to complain about this, because to be getting out regularly with M.E is a huge blessing and achievement, and I'm extremely grateful for how stable my health is at the moment. I have also taken on a little volunteer position for one of my favourite podcasts - Hogwarts Radio - as a transcriber, which is all kinds of awesome. So things are good.

I still have plenty of ideas for how to raise awareness using this blog, and aim to do a new M.E Awareness post very soon. In the mean time, my birthday is this month (I'm getting old!) and I have somehow agreed to take part in this year's NaNoWriMo (National Novel Writing Month) and so a few things are on the horizon for me, all of which I hope to document on this here blog.

In the meantime, for more frequent updates then keep an eye on my other online haunts -

http://www.goodreads.com/thatsizgirl
http://twitter.com/thatsizgirl
http://postpottersyndrome.tumblr.com

- where I shall be available in more frequent, shorter bursts :)

And I hope to blog again soon! So stick with me :)

Today's "thing worth sharing" is a special one - http://www.helpharryhelpothers.com/ - go and help this kid make a difference, he's inspirational.

Until next time,

Sarah x

The Bus Journey Metaphor

This popped into my head at the weekend, whilst I was in the bath of all places (tmi?) which seems to be where all my inspiration comes to me. At the moment I'm sort of in this inbetween phase of my illness, where I'm a lot better than I was, but I have an awful long way still to go, and the journey to recovery is no simple one. What inspired me to write this, and what possibly lead me to the idea in the first place, was the reaction I get from people now that my health has improved. Comparing me to how I was, even just this time last year, sees a dramatic difference in my health and abilities. People see me doing all this stuff that I didn't use to be able to do, and presume that that's me all better again! Well, no, sadly it isn't. I'm not recovered, I'm still very much ill, and the things I do manage nowadays still cause me pain and exhaustion and are a struggle. And, most importantly, the road ahead is certainly not clear.

So I wanted a way to describe this, and as I seem to be using the word journey a lot when I think about it, the idea of a bus journey came into my head. The route I am travelling is the "road to recovery" and the bus driver refers to M.E itself, for that is who is truly in charge, and I am a mere passenger. For this story, I shall say that I started out by catching the bus at the end of 2009. That time period for me was when, after a year and a half of being bedbound, I started making progress once again. I stepped onto the progress bus, and this is where my journey begins.

The bus I am on in this story is travelling at a very slow but very steady speed. That is to say it is always moving forward, always heading in the right direction, but it won't be winning any races anytime soon. Which pretty much describes my progress. As of the end of 2009, I began to make little improvements, very slowly and gradually, but which when added together moved me forward a great deal. I could tolerate more light, I could get downstairs more often, I made my first trips out of the house. So, I have passed many milestones whilst I've been on this bus. I may have hit the occasional speed bump (in the form of a cold or a flare up of old symptoms) which has shaken my health for a short while. Or perhaps had to swerve to avoid an adventurous duck who ventured across the road, (in other words something unexpected has come up I couldn't plan for, some drama or other that causes me stress) meaning I've had to stop everything, hit the breaks and check both the duck and myself are OK before I can set off once more. But I got going again and was till heading in the right direction. And that has pretty much been the case up until the point I'm at now.

With M.E it's never simple. Just because I've made progress so far, doesn't mean there aren't twists and turns in the road ahead of me. The closest I ever saw myself to recovery was when I was at 6th form. I'd missed nearly all of the 2 previous years of school, and there I was, well enough to attend for 2 whole terms. By well enough to attend, I mean for 1 hour a day on average. So comparing that to a healthy person, I still had a long way to go, and I struggled through it, but it was the closest to getting my life back I'd been since falling ill. Then I was hit by a huge relapse which sent me back to being bedbound, and since then I've had to keep the possibility of that happening again in mind, because I'd be stupid not to.


I'm not saying I'm not optimistic, after all, when I boarded this "bus" I bought a ticket to Full Health, and I fully intend to arrive at that destination. But I've been sensible and packed a nighty, spare set of clothes and a toothbrush in a bag which I'm carrying with me, just in case I hit any snags in my journey and end up stopping over somewhere I never intended to, let's say Relapseville or Virus Town.


Recovering from M.E is not an easy journey, and there are countless possibilities I have to prepare for. The way I see it is that this bus can take any direction it wants. It could do a u-turn in the middle of the street at any moment and take me straight back to the very place I first got on. It could crash completely, leaving my body battered and bruised and unable to function, meaning even the idea of catching the bus again anytime soon is out of the question. Plus the bus itself will need repairs and it could be months or years before I ever see it, and that opportunity to make progress, again.

The other possibilities I see are that the bus will carry on heading to its original destination, but via a network of side streets or diversions. I may be halfway there and the bus decides to take a left turn. Technically it's still heading towards the same final destination, but it's going to take a lot longer this way. The new neighbourhood the bus driver has decided to divert into is providing new symptoms. They don't set me back, but maybe they stop me making progress, and so I'm stuck in a network of side streets until I can find my way to a main road. Maybe I get stuck going round the same roundabout for a few months because my body can't work out how to get back on track. Or perhaps the driver decides to try something new, something he's never done before like some stunt driving, only he ends up with a puncture, meaning you're stuck by the side of the road until somebody can fix it. You get the idea.

Where I am right now is on this bus. I'm on the main road, following all the sign posts to my destination, but every time I pass a turning or a fork in the road I can't help glancing down that street and wondering if the next time I'm faced with a different direction, the bus driver (i.e M.E itself) will swing the steering wheel and knock me off course. So I have to prepared for the possibility, and I would like others to be able to see that too.

In order to get the support I need to eventually recover, I need everyone to see how much further is left of my journey, and what obstacles I still have left to face. It's a scary road ahead, and I can't face it all on my own. Yes I've come a long way, but that is no guarantee it will carry on. After all, bus travel is never the most reliable form of transport!

I have no idea whether this metaphor has made any sense, but it was the best way I could think of to describe it. So well done if you got it ;) and thank you for taking the time to read my rambling.

And for a my "thing worth sharing" I highly recommend my lovely friend Suz's blog <3 http://theworldaccordingtosuze.blogspot.com/


Until next time,


Sarah x

Why All Publicity ISN'T Good Publicity.

So, M.E was in the news a lot yesterday. It's rare for it to have such attention paid to it by the media, so often we have to fight to be heard, yet yesterday it seemed you couldn't escape it. Normally I would say this was no bad thing, after all, just mentioning the illness on radio or television may be enough to bring it in to people's consciousness; people who would otherwise be oblivious to it.

Let me start off by saying that in my house, Radio 5 is the radio station that pretty much every radio in the house is permanently tuned in to. We're a big sporting family (well, not myself for obvious reasons!) but everyone likes to be up to date on football and cricket results, as well as listening to their usually brilliant news coverage.

So yesterday morning, as usual, I come downstairs to find my mum in the kitchen, radio on whilst I took a seat in the living room, where I could still hear it. I'd read some things on twitter whilst still upstairs in bed about the coverage that had been on Radio 4, which sadly I didn't manage to hear, but will try and look up online. Then, Radio 5 move on to a discussion about M.E, and I'm all ears.

They started by talking to Esther Crawley, AYME's medical adviser, who has been the subject of death threats due to the research she takes part in. That is truly horrifying, and I am disgusted that people would go to those lengths to voice their disagreement, however strongly they feel about the research being undertaken. People who are behind such threats give a bad name to the M.E community, which is a strong one, and has a very big online presence. Whilst we fight to be heard, these people are giving all of us a bad name.

The dilemma with M.E research is that so much of it seems to be psychological, which lead to the next topic of discussion on the radio. Let me state quiet clearly that M.E is NOT a psychological illness, and has been recognised by the World Health Organisation as a NEUROLOGICAL condition. The problem, however, lies with the continued lack of understanding from members of the public, right up to people in the medical profession, who often refuse to accept this fact, and therefore disregard the illness or treat it as a psychological problem. There is no test for M.E, and so much in unknown about it, and it seems for some doctors that means a problem for them.

So I was disgusted when, once the presenter started taking calls from members of the public, she started grilling them about why they had a problem with M.E being labeled psychological. According to her, it is because there is a negative stigma associated with mental illness, and we don't want to be associated with that. Is that the reason? NO. The reason M.E patients do not wish to be, and should in no case, be classed as psychologically ill, is because M.E IS NOT A PSYCHOLOGICAL ILLNESS. Think of it like this. You break your leg. You can't walk and are in horrendous amounts of pain. So you go to the doctor, only for them to turn to you and say "I'm sorry, I can't help you because you don't have a physical problem, it's a psychological problem you have, it's all in your head." That would be completely unacceptable and wrong, yet this is exactly the kind of treatment M.E patients are subjected to. They have a physical illness, recognised by the WHO and yet are faced with being treated as a psychiatric patient.

To be honest, that is when I turned off the radio. After listening to the presenter speaking to M.E sufferers, and their families, and insisting that maybe the problem we has is that we were prejudiced against mental illness and that's why we weren't happy with the psychological research, and being treated as psychiatric patients, I got so angry I turned off. I have no idea how that segment ended, but in my opinion, the damage was already done.

I would just like to state, for the record, that I have no issues with mental illness. I would never trivialise it, or treat people suffering from mental illness as any kind of lesser being. I understand how devastating mental illness is. Why? One of the people closest to me in the world suffers from depression and anxiety, and I see what she goes through and the scars she bears (literally). I have seen people close to me go through eating disorders, and I understand how horrific an illness anorexia/bulimia is. If I had a psychological illness, my experiences with these people close to me would help me to recognise that, and I would do anything to try and help myself, because I've seen how lives can be nearly lost through mental illness. But at the end of the day, I don't have a psychological illness, I have a physical one, which is why I deserve to be treated in a way that is appropriate for the recognised condition I have.

Yes, M.E research has been focused on psychological treatments, something I neither agree with, or would ever take part in. I believe bio-medical research needs to be the focus if we are to ever get some kind of cure. But death threats are not the way. I truly hope the world will come to realise our struggle sooner rather than later, and that we all get the research in to our illness to help us escape the daily battle. The stigma, and mistreatment of M.E patients needs to stop, and the media needs to get their act together and help us, not hinder our cause by taking us ten steps back for every one step forward.

Sarah x

I'm Still Aliveeeee!

I have been neglecting this blog a bit, especially considering I bang on so much about Harry Potter. You'd think I'd be all hyper-ventilating because the last film just came out. Which I am doing, just not blogging about it ;) Firstly, I don't want to review it because reviewing it without spoilers is pretty much impossible. And all the stuff I want to squee over also involves spoilers. Plus there's the fact I have been to busy watching the film at the cinema to actually talk about it ;) Oh and I've suddenly developed this social life where I feel busy, when in reality, I'm not that busy compared to a healthy person. But compared to the person I was last year, I am so freaking busy.


So yes, where was I? Ramble, ramble ;) I will start working on this blog more soon, I think it needs an overhaul and a new direction, or just some regular posts, so my little old brain is working on it!


In the mean time, if you actually liked my Potter related ramblings then I am using "thing worth sharing" as a shameless plug for my own Tumblr which I just set up ;) http://postpottersyndrome.tumblr.com check it! So whilst I fangirl over there, I might actually use this blog to get more "proper" blogging done.


Until next time!


Sarah x

One Minute Past Midnight

When I first heard that UK cinemas were doing midnight showings of Deathly Hallows Part 2, I knew I had to be there. So, despite the fact I had already booked tickets for a showing later on in the day, I braved it and booked the midnight tickets, after managing to convince my mum to come with me!

The day beforehand was spent resting. I spent the whole day in bed, had a snooze in the afternoon and tried to conserve all the energy I could. I started getting ready around 8/9 o'clock when I couldn't contain my excitement anymore and became restless. I changed outfits, checked and double checked I had both my 3D glasses and my regular ones. I went downstairs around half past 10, to wait for the taxi we had booked for 11 o'clock. I sat in my living room, my Hufflepuff scarf around my neck, a home-made Hufflepuff crest pinned to my chest, ready for the ride to begin.

The taxi arrived, and ten minutes later I was climbing out of the car outside the cinema. I hadn't seen town at that time of night for many years, and, as you would expect, there were a fair few drunkards about! As I walked down towards the cinema itself, one woman approached me with her finger outstretched and called to her friends "Oh look! She's got a Hogwarts scarf on!"

And I wasn't the only one. On entering the cinema I spied two girls seated in the foyer, one of them in a Gryffindor scarf, the other a fellow Hufflepuff. Whilst walking around the cinema I spotted witches complete with pointed hats and broomsticks, people in robes, people with scarves. I felt at home straight away!

Not long after we'd arrived, the Deathly Hallows part 1 screening that had been taking place kicked out and so the foyer was flooded with even more magical folk. We headed upstairs where they had a cardboard cutout of Harry and Voldemort by which people were taking pictures. I wasn't leaving without a photo to mark the night so I braved my hatred of flash to get a picture.

They let us in at about 11.30, where we took our seats, which were numbered due to the demand! We sat, we waited, and eventually coming up to midnight the trailers kicked off. Best moment of the trailers? The advert for Universal Orlando Resort in Florida. The trailer contained a montage of the parks located there, and as soon as the Wizarding World appeared a huge cheer and round of applause filled the room.

After that, the trailers truly seemed to go on forever. People were getting restless, sighing, waiting. Then, the BBFC screen came up, Voldemort appeared and the last scene from Part 1 unfolded. Then, the moment we'd all been waiting for. The WB logo growing ever closer; the film begins.

I will never forget the midnight showing, nor the atmosphere it provided. When we laughed, we laughed as one, when we cried, we cried as one. The famous lines from the book received cheers and applause, as well as those moments we'd all been waiting to see. The biggest reaction? I'm not one to spoil, but a long awaited romantic embrace stole the show.

It all ends here. Yes, the film is out, there will never be another. But Potter isn't over. The number of people in the cinema that night, two full screens of Potter fans show how alive Potter is today. The magic lives on.

Sarah x

Premiere Day!

I actually can't believe the Deathly Hallows Part 2 Premiere is tonight! Seems like so long I've been waiting for this film, and now the publicity is in full swing, interviews are happening left, right and centre and the media circus descends on Trafalgar Square tonight when the stars will gather for the last time. It's so exciting! Yet for the actors, this is the moment it will sink in. Throughtout the press for Part 1, they all stated the Part 2 premiere as the moment it would sink in that it's finally coming to an end.

So tonight, I will be glued to my laptop watching the livestream, whilst being grateful that I'm sat at home in the warmth with as much tea as I like on hand, yet also feeling a touch jealous that all those fans are getting to be part of that moment. Some of them have been camping all week which, let's face it, is pretty dedicated! Puts my Harry Potter fan-ness in perspective, I feel almost inadequate ;)

I imagine the next week will be somewhat of a blur, I've managed to end up with a hospital appointment a few days before I'm meant to see the film, which will mean a strict schedule of rest is in order to see me through the week. But I've been good so far! Now to balance the excitement the countdown to the film will create, whilst not getting so excited that all my precious energy is wasted on that.

I'm sure I'll blog straight after the film, just to have somewhere to squee to my heart's content, and maybe even post a little blog beforehand, time will tell! But I can't believe we really are nearing the end, what a journey.

"Thing worth sharing" this week goes to this article, flying 5000 miles to go to the premiere, just in case you doubted the dedication <3

And a special note goes to everyone who lost their lives 6 years ago today, and to the families still grieving.

Until the next time!

Sarah x

Fear of Failure

For this blog post, I wanted to share my views and feelings on one of the toughest decisions of my life, dropping out of college. So it's a personal blog post, and purely my own opinions. Enjoy :)

When I was 17, my health deteriorated to the point where I could no longer attend 6th form college, leading to me having to eventually make the decision to drop out. This is no easy decision; abandoning your education goes against all your instincts, but when your body is unable to cope, there really is no other choice.

The decision to drop out of college was not an easy one for me, and I know there are plenty of fellow M.E sufferers who have faced the same dilemma of putting their health first. Throughout my school life I was a fairly high achiever, I did well in most of my subjects and managed to get good grades. My GCSE grades will always be slightly tinged with disappointment for me because, before I fell ill, I was predicted As and A*s. This was never going to be achieveable after missing so much schooling through years 10 and 11, not to mention the fact I was still battling my symptoms every day.


I've always said my doing well at school was a product of my fear of failure; to me, I just couldn't face the idea of letting myself and other people down. I had to try my best and aim for good grades. But pulling out of college and becoming something of a "school drop out" has all the connotations of failure, one of my biggest fears.


The way we are brought up these days is to be told that qualifications are everything; that without all our GCSEs we can not possibly get anywhere in life. Schools and parents are constantly drilling it in to us from such a young age that we don't want to become bin men or work in a fast food outlet. The pressure to avoid this seemingly dreadful life is huge. I took a lot of comfort in the fact that secondary schools these days care mostly about their league tables, as opposed to personal achievements of their students. Sure, there are certain teachers who will take an interest in their students, and who care about what happens once they move on in to the big wide world, but at the end of the day if a school wants to look good, it needs pupils to get high grades.


Dropping out of school to focus on my health wasn't a failure. It was the greatest decision I ever made, because my body could relax without fear of stress induced relapses, and I had more time and energy to put in to getting myself better. But there is one thing I regret, and that's not realising that school isn't everything earlier on in my life. Even before I got ill, I fear I wasted some of the best years of my life stressing over school work instead of having fun. Don't get me wrong, you can still do well at school and have fun, and I'm in no way implying that everyone should doss around and skip classes, because I'm not. I'm saying that the stress associated with the fear of failing was just wasted energy.


I've learnt from this period in my life, and even when I go on to work (when I'm well enough) I will make sure that I enjoy myself, and not work myself in to a hole. I'm an ambitious person, but that doesn't mean I need to sacrifice any kind of happiness and enjoyment I can get from work.


For me, one quote that helps me realise that however my health may be, there are more important things was this quote-


It is impossible to live without failing at something, unless you live so cautiously that you might as well not have lived at all - in which case, you fail by default. - J. K. Rowling.


I don't want to be one of the people who hasn't lived; I want to learn from every experience. After all, getting ill has turned out to be more educational than any school course.

My thing worth sharing, in keeping with my blog, is the full J. K. Rowling quote I used above, which can be found here. :) Thank you for reading!

Until next time,

Sarah x

JKR speaks! Pottermore announcement squee times.

It's hard to believe it was only a week ago that Potter fans across the globe were set on an online hunt for letters, the result of which spelt out the mysterious "Pottermore". And now J. K. Rowling has revealed the website, which will provide much awaited e-book copies of her novels, alongside extra information about our favourite characters which she has been "hoarding" as well as an interactive experience which will see users have the chance to become sorted and follow Harry's journey from their own perspective.

My opinion? It sounds amazing! For so long I've wanted extra information to be released, and with hints at an encylopaedia in the past it has always been a possibility. Am I happy at the way in which it will be released? Perfectly! Pottermore promises an interactive reading experience, allowing readers to track their progress and gather extra information and earn House points along the way. Sounds pretty exciting to me! My one concern is the sorting element, in that I doubt you'll find a Potter fan who hasn't already partaken in some sort of sorting quiz, and formed an alliegance to a particular House. For me, that house is Hufflepuff, where the "just and loyal" and "unafraid of toil" find themselves at home. But with news that the sorting questions are coming from JKR's own head, how can we argue with the results?! It's the closest to a Hogwarts sorting we're ever going to get. Plus, with extra information about Hufflepuff, Ravenclaw and Slytherin for people sorted in to those particular houses, it should make for a wonderful experience!

The website launches in October (a nice birthday present for me!) but fans are getting the chance at an early preview on 31st July, something which I'll be keeping my eye on. One thing is for sure, Potter and the Potter fandom won't be over come 15th July, something which we can all be eternally grateful for <3


My "thing worth sharing" is coming in quote form via Leaky's twitter updates -

A lot of the #pottermore team is Hufflepuff, which JKR said is what "you want in a team - they're workers!"

Until next time,

Sarah x

Last Ever Trailer

Just putting that title sounds so wrong :( the last ever Harry Potter trailer has been released, and boy have they gone out in style! If you don't tear up a little bit at this then you have no heart ;) just kidding, maybe.

Stayed up last night to watch it, spent the hour after it was released obsessively re-watching and trying not to bawl ;) so many emotional scenes in there, but I think the opening sums it up really -

Every moment's he's lived

Has led to this

And the trailer itself is my "thing worth sharing", don't need to say much more :)

Pottermore

http://www.pottermore.com

What is it?! What does it mean?!

http://twitter.com/pottermore

http://www.youtube.com/JKRowlingAnnounces

Last night fansites starting providing co-ordinates, which when entered in to this website - http://www.secretstreetview.com revealed clues in the form of individual letters hidden within the map. When all ten letters were revealed, we were left with either the words MORE POTTER or, the already trademarked by Warner Brothers, POTTERMORE.

The last letter was revealed through the Pottermore twitter account, and a website was made available, albeing providing nothing more than the word Pottermore and JKR's signature.

Today, two owls appeared on the site, which when clicked on linked to a youtube channel which provided a countdown.

So what is it that could be happening on the 23rd June? Rumours based on the trademark application include a social network, or a large multi-player game of some sort, personally I'm hoping for some sort of online Encyclopaedia.

For me this marks something quite exciting, in that I missed all the clues and hints left on JKR's website in the lead up to the last book. So these clues are a chance for the fandom to get excited again, and for new fans to enjoy the build up to an announcement for the first time!

So, watch this space for whatever the announcement!

Obvious "thing worth sharing" - http://www.pottermore.com

The Journey

It is another one of those times in the Harry Potter fandom where there is so much film news coming out, you literally don't know where to start. TV spots emerging, 8 posters released and magazine specials left right and centre, there's so much to talk (squee) about! In an effort to make my blog a bit more personal (inspired by MEAW) I wanted to focus on the magazine article part of that first sentence.

Deathly Hallows has been the first HP film I've really been able to throw myself in to the pre-release hype for. When I first found the online wealth of Potter websites, Half-Blood Prince was being filmed so technically that was my first taste of the excitement and anticipation. I remember waiting and waiting for the HBP trailer, the rumours and the disappointment when they failed to follow through, and the buzz all over the internet when the trailers were released. Of course the HBP build up was also tainted with disappointment when it was announced that the film would be released later that planned. A lot later. This was also the time that the big announcement about Deathly Hallows news broke; the book would be adapted in to two films.

So yes, I had a taste of the excitement, but it was to be halted prematurely when my health took a turn for the worse. How would this affect my ability to follow the film news I hear you say? Well, for a start I was unable to use my laptop, which pretty much cut me off from that world. My laptop screen was too bright, now that light sensitivity had returned to my life with a vengance, and extreme weakness in my wrists meant typing was out. Over the next few months and years I would hear snatches on the radio or the television which was something. Of course during this time, I was also unable to read, which meant I was separated from my rekindled love affair with the Potter books, and so the series drifted from my mind after several attempts at reading had caused me nothing but misery due to my symptoms making the task impossible.

Fast forward to 2010, with improved health and my ability to use my laptop to connect with the world restored then I could once again throw myself in to the media frenzy that surrounded the Potter series. The scanning of news sites resumed, the awaiting of trailers, posters, pictures, anything that would be released in the build up to the second to last film in the series.

Over the year clips and trailers would be released, meaning either a late night to stay up to watch the online release (thanks to U.S time zones!) or else a very early morning rush to the laptop once I was out of my zombie M.E coma. But 2010 was also a year I was leaving the house more, after months and years of being housebound, and leaving the house meant shopping! So it was for the first time that going to the newsagents became a real possibility, and when news of Deathly Hallows features being released in magazines broke, I could make it to the shops and have the satisfying feeling of seeing the latest issue of Empire/Total Film sat on the shelf, being able to pick it up and pore over the new pictures and interviews. As the release of the film came closer, more issues appeared in different magazines and newspapers offered special giveaways or dedicated pull-out sections containing more interviews than you could shake a stick at! And my ability to be involved in the build up to the film had been given back to me, so I grabbed it with both hands. I missed out on the build up to the final books, so the build up to the films had replaced that gap. I was revelling in the excitement and buzz around the films, and enjoying every moment.

Not only that, but over the course of last year I can relate so many of those Potter stories to where I was in my life health wise at that time. My first trip to the local shops in my brother's car without my wheelchair to buy a copy of Empire magazine, nipping in to WHSmith on my way home from a hospital appointment and spotting an issue of SFX magazine with Daniel Radcliffe right there on the cover. To most people grabbing a magazine is something you do without even a second thought, picking up something to read on the bus or train, or a long car journey, a regular treat to sit on the coffee table. Most are to be discarded, thrown on to that week's recycling pile. But could I throw away anything Potter related? No I could not! So here is my collection, which not only shows my geeky, fangirl-ness but charts a journey of improving health and holds so many memories upon those pages.

On 15th July the pre-film buzz will officially be over, when the final film is release and the series reaches its end. But that doesn't mean that it will be forgotten, for many the days which are spent hitting refresh on web pages til the latest snippet of news appears before them, will be the best days of their life, no I'm not kidding! And tonight marks the journey coming full circle, with the showing of an exclusive clip at tonight's MTV Movie Awards. This time last year, the fandom received it's first glimpse at Harry Potter and the Deathly Hallows Part 1. So tonight, with a little over a month until the release of the final film, we get that same feeling of excitement for one of the last times. Enjoy it! I certainly will.

And a slightly late edition to the post as my "thing worth sharing" wasn't released when I posted, the MTV Movie Awards clip can be found at this link!

Success

So M.E Awareness Week has come to an end, and so comes the time to reflect up on the achievements! This year, to spread awareness I have done the following things -

Spoken to the paper
Posted a number of blogs
Shared links on Facebook and Twitter
Made and awareness video
Displayed my awareness ribbon on my online haunts

For easy reference, here are all the links to things I have posted and shared this year, all in one place!

York Press Article
My Awareness Video
Daisy's amazing, much watched, much tweeted awareness video
First Awareness Blog Post
The M.E Years - 2005
The M.E Years - 2006
M.E Awareness Day - Invisible Illness Questionnaire
Association of Young People with M.E
Action for M.E
M.E Association
Chlay Charity Single

I'll admit I hoped to do more MEAW blogging, but my health made that impossible, however keep and eye out for the rest of "The M.E Years" which will probably crop up at some point as I hate leaving anything unfinished.

I've received some great feedback from some of the things I've done this year, including people who have had their opinions changed or had never heard of M.E before, which means a great deal to me. If I've educated just one person then I'm happy. I want to thank everybody who has shared my video, or any of the links I've posted, my friends, both M.E friends and non-sufferers for all their support. I've been completely overwhelmed.

When I started this blog, raising awareness of M.E was a huge goal of mine, but writing about my illness is not something that comes easily to me. I don't like being self-pitying, and wallowing about being ill, it's not my style. But in order for people to understand the illness, I have to open myself up and share my suffering, which isn't easy. I will definitely blog more in the future about M.E as I've had such a great response, so check back for more!

Thank you for all the support, and as things worth sharing go this week see all the above links! Thank you :)

Until next time,

Sarah x

M.E Awareness Day - Invisible Illness Questionnaire

So today is International M.E Awareness Day! People from all over the world are spreading the word about M.E and the devastating affect it has on the lives of its sufferers. One of the biggest battles we face is the face that M.E is an invisible illness - most of the time you can't see what is wrong, there is not lable that plasters itself across your forehead letting the world know you're ill. So we face the battle of lack of understanding because to the rest of the world we look relatively normal. To understand more about invisible illnesses, please read this quiz, thank you <3

 1. The illness I live with is: M.E/CFS – Myalgic Encephalopathy/Chronic Fatigue Syndrome

 2. I was diagnosed with it in: May 2006

 3. But I have had symptoms since: September 2005

 4. The biggest adjustment: Going from being a huge top of the class geek to a drop out with 5 GCSEs, losing friends and a social life, having to put my life on hold and give up my passions such as music. Having to use a wheelchair to go out the house.

 5. Most people assume: From looking at me that I’m probably perfectly healthy, even when I’m in my wheelchair I can tell people are confused by the fact my legs move, and I look fine.

 6. The hardest part about mornings are: Not knowing how I will feel, or waking up and feeling horrendous. Waking up and not being able to keep my eyes open, my limbs feeling weighed down. If I haven’t had a good night’s sleep then mornings hit me even harder. When I suffered from nausea I would dread mornings because I struggled to eat at that time of day. When I was on my highest dose of sleep medication, morning would be a complete blur because of the groggyness it caused me, I wouldn't be able to speak for hours.

 7. My Symptoms: Severe exhaustion made worse by any sort of activity, muscle pain and weakness, joint pain, difficulty concentrating and poor memory, noise sensitivity. In the past (and possibly will crop up in the future) I’ve suffered from severe headaches, sore throats, dizziness, nausea.

 8. A gadget I couldn’t live without is: My laptop and my phone as well as my ipod touch. It’s how I keep in touch with the world, my friends and find fantastic help and support.

 9. The hardest part about nights are: Getting to sleep. I never know if it will take minutes or hours, or whether I’ll wake up in the night possibly multiple times, even if I’ll get any sleep at all.

 10. Tablets a day: One amitiptyline tablet, down from 4 amitriptlyine tablets this time last year though! Painkillers if something hurts. Sometimes vitamins and supplements.

11. Regarding alternative treatments: I haven’t tried any. I’m generally a sceptic when it comes to people who want all your money for no guarantees, but some things work for some people and I’ve seen friends make improvements from alternative treatments, so I wouldn’t rule them out completely.

 12. If I had to choose between an invisible illness or visible I would choose: Neither ;) but a visible illness would be easier, even in my wheelchair when people can see what something’s wrong, they don’t understand why I can move my legs and why I don’t push myself. I want people to give up their seats when my legs can’t hold me up but no-one would even consider it looking at me.

 13. Regarding working and career: Ha! I have no prospects ;) I am lucky to have the GCSEs I have, I had a supportive school and a wonderful home tutor. At the moment I do 2 volunteer jobs for AYME which I love and it’s my first experience of working. I dread the day I have to start looking for work, because I don’t want to live off benefits forever, but I have so little experience. I’ve never had a paid job. Even if I knew what I wanted to do as a long term career, I have such a long way to go.

 14. People would be surprised to know:  I’m actually a happy, positive person! I enjoy life because I’ve learnt how to make the most of what I have, and so the tiniest things mean even more to me. I think back to the days I was completely bedbound and unable to walk, and see how far I’ve come and appreciate all the things I can do now. But that behind that mask, I am suffering every single day.

 15. The hardest thing to accept about my new reality has been: Losing friends, becoming so isolated and having to give up my education. My health has to come first, which I have accepted, but it was a hard lesson to learn.

 16. Something I never thought I could do with my illness that I did was: Meet new people! I’ve made some fantastic friends over the years who will be friends for life.

 17. The commercials about my illness: There are none. Raising awareness of M.E is down to the charities and sufferers themselves and it’s an uphill battle all the way.

 18. Something I really miss doing since I was diagnosed is: Playing the flute, playing in bands and orchestras. Nowadays I can’t even hold my flute for long and get out of breath after about 10 minutes. I miss going out with friends more often, going on holidays (haven’t been on holiday in 5 years). Being able to go out whenever I like without worrying about the consequences.

19. It was really hard to have to give up: 6^th form. I had to make the decision that I wasn’t going back, which meant abandoning my A level (singular, I only took one subject) and therefore giving up hope of university, for the mean time anyway. I’d always done well at school, and I always figured I’d do well and go on to university, so it was a big shift in my life plans.

20. A new hobby I have taken up since my diagnosis is: Writing, I started a blog this year. Also writing letters, I have lots of lovely pen-pals. I love listening to audio books, which came from being too ill to read.

 21. If I could have one day of feeling normal again: I would go and visit my best friend at university and do normal best friend like things!

 22. My illness has taught me: That the small things matter the most, sitting out in the fresh air, spending time with family etc. And that I am lucky to have every moment, however bad things are it could be so much worse. It’s taught me who my real friends are and given me new friends. I am more positive than ever, and enjoy each day to the fullest because I never know when things will be snatched from under my feet again. On a negative side, it’s taught me that not everyone is understanding, that there are still people out there who are ignorant when it comes to this illness.

 23. Want to know a secret:  I may be ill but I am still an actual person, with a personality and I enjoy life. I am still a 20 year old girl who likes to have fun, even if my fun has to be limited.

 24. But I love it when people: Talk to me! Make the effort to get to know me, ask me about my illness and then say that they’ve learnt something new from talking to me.

 25. My favourite motto, scripture, quote that gets me through tough times is: “Everything happens for a reason”. I got ill and made new friends, who I would never have known if I hadn’t.

 26. When someone is diagnosed I’d like to tell them: That there are people that understand and you are most definitely not alone!  The M.E community is one of the best online communities there is, that there is a future for people with M.E. You can make friends and enjoy things. And rest, always rest. Rest, rest, rest! Don’t risk you’re health, put it first and look after yourself.

 27. Something that has surprised me about living with an illness is: That some people really couldn’t care less that you’re ill, and those people aren’t worth keeping in your life. That new friendships can come out of something like this.

 28. The nicest thing someone did for me when I wasn’t feeling well was: So many nice things! People have sent me cards full of messages when I relapsed, and post when I’m having a tough time. My sister goes out of her way to make me laugh, she looks after her big sister, and she was brilliant when I was bedbound. When things are hard and people pass on well wishes, people I’ve barely even spoken to.

 29. The fact that you read this list makes me feel: Happy that you’re willing to spend the time and energy to hopefully learn something about M.E!

 30. Something I want people to take away from this: M.E is an invisible illness, one that has upturned my life and made me have some particularly tough times. That when I say I’m fine, I’m probably not. But that I’m still a person beneath it all who wants to be happy and get on with things the way anyone does. I want people to be understanding, helpful and accepting. Living with this illness already makes my life tough, and every day a battle. I don’t want to have to battle ignorant people as well on top of all that.

Thanks for reading! :)

Sarah x