Awareness Video

I've posted an M.E Awareness video by the lovely Daisy before on this blog, and she has made another brilliant one so here it is!

I find it hard to express just how much this video resonates with me, because I literally feel everything written on those tiny slips of paper, and often struggle to put into words the things which this video says. I'm so grateful to Daisy for all the great work she does raising awareness, because she often says exactly the things I want to but in a way I never could! This part especially -

M.E makes you feel like the world wasn't designed for you

This is so true, and is something I've been thinking about a lot recently. Last week I was at the hospital and as usual, I stopped by the shop there to pick up a few magazines. One of them is a well-known women's mag which I read regularly, usually when I need change and have to break into a fiver/tenner to get it! But I enjoy reading it each time. Only this time, I was reading this magazine and it really struck me just how irrelevant to my life it is. I'll explain.

Most women read these sorts of magazines because you can relate to them, and I have been able relate to them in the past. But when you don't live the life of an average woman because illness is holding you back, you suddenly realise just how different your life is. Let's take a look at the average topics covered in a women's magazine -

Career- well I can't work, as is the reality for many other sick and disabled people. Tips on how to boost your career or make the most of your office hours really don't apply to me. I would love to work, but it's just not possible with my health problems, and so reading about where I should be in my life or how empowering a job can be is only going to get me down.

Fashion and beauty - I like buying clothes, don't get me wrong. But right now my outfit choices are 99% based on what will be comfortable for whatever task I'm doing that day, or more frequently what is the warmest outfit I own so that I don't freeze and end up in even more pain with my joints? Add to the fact that I'm living on pretty much no money at the moment because the benefits system is a joke, then it is very rare I get to spend money on pretty lovely clothes. As for beauty, I barely have the energy to bathe and brush my teeth as it is. I can't spent hours primping and preening and wasting valuable energy on the many stages I should be going through to maintain perfect skin.

Relationships - M.E is a very isolating illness, meaning meeting new people can become difficult, and most of your time is spent alone or with family. I know plenty of people with M.E who are in relationships and so this isn't a blanket thing, more a personal one. But relationships for me have to come pretty low down the list of daily worries.

Fitness and exercise - I've actually become a lot more body conscious since getting ill, but there is really very little I can do about it. I cannot exercise, I can't join a gym or go jogging or swimming or whatever else they're advising. I really wish I could.

So I sit there thinking to myself, when did women's magazines become escapism? Surely they're designed to be the opposite; to be relevant to every day life.

This is just one example. Another thing I used to struggle with was listening to the radio. Especially stations aimed at a younger audience. I'd listen to shows where people were ringing in, worrying about exam results and uni, thinking "that should be me". People would talk about going out on the weekend, and again that's something I can't do.

Everywhere you hit brick walls where your life doesn't permit you to join in with the rest of the world. From not being in education, to not being able to get into your favourite shop because it doesn't have a disabled ramp and you can't face asking them to go and get the portable one. But we muddle on because we have no choice, this is our life and we're stuck with it.

This is probably a bit rambly and I'm not sure I've gotten across everything in the way I hoped, but I just wanted to get it out there.

Until next time,

Sarah x



2012

First post for 2012! My little blog is over a year old, I feel so proud. I really am an awful parent to it, though ;) But I am back, and hoping to blog again more reguarly once I can get my inspiration back. 2012 will see a new M.E Awareness week, and so I should really start coming up with plans for what I'm going to do!

The start of the year is going well so far, with me settling into a new volunteer role and trying to back into a routine after Christmas, and the year ahead is shaping up to be a good one, so hopefully I'll have a chance to blog about all of my experiences along the way.

So hopefully I'll be posting again soon, please bear with me if I don't post for a while, health comes first and my brainfog has been an obstacle lately ;) so maybe shorter more frequent posts on more topics I'm really passionate about is the way to go! We shall see :)

Here's a "thing worth sharing" to echo the one in my first post, DJ Earworm's 2011 mash-up :)

Until next time,

Sarah x

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