The M.E Years - 2006

Back with more M.E Awareness Week blogging! Had a bit of a rough week symptom wise to had to slow down my campaign, but here is the next chunk of my story :) I actually have great difficulty recalling a lot of the events of this year, whether I've blocked them out or all my days just merged together I'm not sure. For example, I know there was a football World Cup this year but can't remember any of it ;)

2006 - Deterioration and Diagnosis

I returned to school in January, doing just two hours a day on a part time timetable that I had worked with the school to arrange. After all, everyone presumed I was on the way to recovery from the glandular fever that had struck me down. I signed myself in and out of the office and was told to visit the nurse should I feel ill and I could go home. For a while I was managing fine, but it soon became clear that I was beginning to struggle. I had months of work to catch up on, coursework to complete as well as the homework being set at the time. As well as this, I was catching every bug going, colds and sore throats would wipe me out for weeks, and I would end up spending more and more time off school. Eventually one bug would set me back so much that I wouldn’t return for the rest of the year.

We knew that things weren’t right, I was still so drained of energy and so early on in this realisation had we returned to the G. P to express our concerns. In the end, I must have had four glandular fever tests that came back negative, and although the test isn’t entirely accurate, it was becoming clear that it may be more than glandular fever at work. This was the first time M.E was mentioned. I was referred to a consultant at the local hospital, a paediatrician. The wait to see them was long, and in that wait I had gone from attending part time school to not attending at all because my health had deteriorated.

When I finally got that appointment it was daunting and scary. I would have the huge batch of blood tests that all patients with M.E become used to, to rule out any other causes of the symptoms I was struggling with. When they came back clear I was diagnosed with M.E/CFS. The diagnosis is both a relief and a curse. I remember feeling so relieved to have a name for what I was feeling, and when provided with information about the illness, everything I read fitted my symptoms. But there was no treatment and no cure. I would have check-ups every other month and look at ways to gradually improve the amount I could manage, but no more than that.

Later that year, I would attempt once more to return to school. Education was always important to me and I didn’t want to miss any more work but in the end I didn’t even make it past the first day of Year 11. The rest of the year had spent two weeks on work experience, something which I was never to do, and so when they returned to school so did I. I went in for registration, and for one English lesson. The next day I woke up with a chest infection which was to drain me of all my energy and set me back once more. I didn’t go back that year. A few months later the school organised a home tutor who I would see for four hours a week.

The education side of missing school was taken care of for me, but what nobody factors in is the social side. At aged fifteen, all you want to do is see your friends and that was taken away from me by my health. The hardest part though was the lack of effort anyone seemed to put in to keeping in touch with me. I had one friend who would ring me with the gossip, but it seemed to the majority that I was very much out of sight, out of mind.

Also, the first M.E video I posted by a girl called Daisy has now reached 3000+ views which in incredible :D we managed to get it retweeted by Harry Potter stars, Oliver Phelps, Matt Lewis and the wonderful Chris Rankin who has been super sweet with his support for the cause :) and my video has topped 200, which is incredible given it's my first ever awareness vid.

My Story - The M.E Years - 2005

Hey guys! Another day, another M.E Awareness Week post! I wanted to share my story in more detail, what I have had to live with over the past five years. So I'm hoping to post my story here on my blog, each post focussing on a separate year and the hurdles I had to face during that year. I hope some of you can take the time to read it, it took me an awful long time and a lot of energy to write up so I am grateful to everyone who reads it. I felt it was important to start my story before I got ill, to give a picture of the healthy, lively teenager I was before I was struck down with M.E at fourteen. I would say enjoy, but I'm not sure it's an enjoyable story ;)

2005

Falling Ill

2005 was a pretty eventful year for me, even before I got ill, which was no surprise given I was fourteen years old at the time. Like most people that age I was balancing life with friends with school and extra-curricular activities, along with the constant battle of growing up and fitting in. In my spare time I played the flute, which saw me attend the council run Performing Arts Centre each Saturday morning to play in a concert band. At school I took both flute and oboe lessons and played in both the junior and senior school bands.

My love of music also extended to bands and artists who I became passionate about. In February 2005 I attended my first ever concert; Green Day at Hammersmith Apollo in London. I had inadvertently gained a reputation at school as the Green Day loving girl, with pictures adorning the inside of my locker and lyrics written on every available space of my pencil case.

Education wise, I did well at school. My fear of breaking the rules was the main cause of my success; I simply couldn’t not too my homework. I did well in tests, because I was scared of failing. That year I took part in a French Exchange that would see me visit France, my first ever trip abroad, at the start of the year and later have my exchange partner to stay in return.

So things were pretty hectic but I was healthy. My first blip that year came in the form of middle ear infections which were to strike me down in the run up to Year 9 SATs. I had time off school and eventually my ear drums perforated, causing much pain. I was able to return to school in the nick of time and sit my exams, albeit with considerations put in place, in what was to be a strange foreshadowing of things to come over the next few years. But at the time I wasn’t to know any of this. I sat most of my SATs as normal with the exception of the maths listening exam, due to the fact my hearing was yet to return to normal. I sat that one exam in a separate room, with my best friend who suffers from a hearing impairment, where we had the questions read aloud to us instead of listening to them on a tape. 

Summer was a busy time as well with just my second ever trip abroad coming a few months later in the form of a holiday with a friend. I returned to the UK and the following week I went off on my family holiday, to one of our usual British coastal haunts. It was one of the best summers I remember, but the events of the next few years were to change the course of my life forever.

I was fourteen when I first fell ill, with what was suspected as glandular fever.  It was September 2005 and I had just started Year 10, the first year of GCSE work. Having already spent a few days of school with an outer ear infection (different from my previous ear troubles but later a doctor would connect the two events),  I had returned, only to wake up one morning with a headache. I had taken painkillers and carried on as normal, going to school with a packet of paracetamol in my lunchbox and making it through the school day. By eight o’clock that evening, however, I was so drained of energy that I climbed straight in to bed and fell asleep almost instantly. The next morning my mum struggled to wake me, I couldn’t get out of bed, my glands were swollen and I had a sore throat and bad headache.

After spending the summer holidaying with a friend the two of us had of course spent an awful lot of time together, including a week where I stayed at her house during the same time her boyfriend was there.  He had been struck down weeks later with glandular fever, something which my friend’s mum had rang to inform us about, but I hadn’t thought much about it and it at the time. On the same day I had woken up with swollen glands, my mum received a phone call saying that my friend was suffering the same symptoms too. All signs seemed to point towards both of us having caught glandular fever.

As the weeks went on, I was to remain confined to bed the majority of the time, as well as developing sensitivity to light, meaning I was living in the dark with my curtains drawn constantly. This light sensitivity became so bad that I was unable to stand the brightness of my TV, or the screen of my phone. I lived with only the radio for company whilst I drifted in and out of sleep throughout the day. Even my sister was urged to stay out of my room for fear that she would catch glandular fever too. The main problem being the fact we shared a bedroom.

Whilst I underwent numerous blood tests for glandular fever that kept coming back negative, I was still struggling with outer ear infections, meaning I was back and forth from doctors, subsequently draining me of even more energy. When the ear infections wouldn’t stop coming back, I was referred to ENT, and would make several trips there to have my ears suctioned and tests done, all whilst struggling with sore throats, headaches, painful glands and utter exhaustion. On top of this, I wasn’t sleeping at night time, and was relying on Nytol tablets to help me get the sleep I so desperately needed and stop me lying awake for hours during the night.

Eventually I did manage to improve, my symptoms began to ease off  and my quality of life improved bit by bit. I started watching the TV with sunglasses on, eventually not needing them at all, and my energy levels picked up. It looked like the worst of what I had was over. I started looking at school work, which I had been sent by the school but which had as yet lain untouched, and spent my days lying on the sofa with the telly on. By Christmas I was thinking of school, of trying to catch up what I’d missed and heading back to rejoin my lessons. I went to my form’s Christmas party having spent months away from my classmates and things were looking up. I was still drained, but could only assume it was the effect of the glandular fever, and that’s I’d be right as rain in a few months.

Keep checking back for the next installment of my story, and in the mean time my "thing worth sharing" is the Association of Young People with M.E's website, where you can find a wealth of information about the condition as well as information about the great work they do. http://www.ayme.org.uk/

Thank you!

Sarah x

First M.E Awareness Video

Hello again! Two posts in one day, that's my dedication to M.E Awareness Week ;)

Over the past week or so I've been working on a few awareness videos to get the message out there, I really wanted to focus on the "Hidden Lives" idea, i.e the side of M.E that so few people see. In the video I've included photos I've never shown anybody before, simply because I thought I looked too ill or because I was too weak to get online to use my laptop and share the photos. I've shown landmark moments in my M.E journey, that would seem so insignificant to a healthy person. It's my journey in photos, and I hope it achieves what I set out to do, show people all sides of M.E and the battles I, and so many others have to face daily.

Please take a moment to watch it if you can :)

Thank you!

Sarah x

M.E Awareness Week

It has arrived! Today marks the first day of M.E Awareness Week, and so I am using my blog to share as much information about the condition as I can. I have suffered from M.E/CFS (Myalgic Encephalopathy/Chronic fatigue Syndrome) for 5 years, and so raising awareness is something I am very passionate about.

So, what is M.E? M.E is a neurological illness that causes extreme fatigue that is unrefreshed by sleep, as well as a variety of other debilitating symptoms including muscle pain and weakness, joint pain, headaches, poor memeory and concentration, sore throats, dizziness and nausea. There is no known cause for M.E and no cure, and there are 250,000 people battling the illness in the UK alone.

To raise awareness this week, I will be speaking to my local paper, displaying posters, writing about my experiences with the illness as well as posting videos about the symptoms and the way the illness has effected my life. So keep checking back all this week to see more!

What can you do to help? There are many things! AYME, Action For M.E and Invest in M.E all have brilliant posters you can display, either in your windows or find somewhere such as a library or a doctors surgery that are willing to disply the posters. The posters can be found at these links -

http://www.ayme.org.uk/files/AYMEposter2008.pdf

http://www.afme.org.uk/res/img/resources/Awareness%2005%20poster%201.pdf

http://www.investinme.org/Documents/ME%20Awareness/ME%20Awareness%20Month%202011%20Poster%20BOB.pdf


You can also use the following images wherever you can online, display your awareness ribbon proudly!

You can also go to iTunes or Amazon and download the song "Silently" by Chlay, which will raise money for the M.E Association. It's only 79p and it's a truly beautiful song, and it only takes a few seconds!

So there's much more to come. A very worth "thing worth sharing" this week comes in the form of an M.E Awareness video made by lovely AYME member Daisy, please take 5 minutes to watch it as it speaks volumes.

Thank you!

Until next time, which will be very, very soon I'm sure :)

Sarah x

And So It Begins - DH2 Trailer

It has arrived! -



Wow, I mean just wow. Epic doesn't seem a big enough word does it?

Last night saw the debut of the first Part 2 exclusive trailer, after the sneak peak released a few weeks ago. For me that meant waiting up, exchanging a few hours tossing and turning and hoping to fall asleep with using that time to constantly refresh web pages until the first trailer appeared. And then it did! Only in French ;) the Orange France website went and posted the French dubbed version of the trailer hours before the English version was meant to debut. I speak a bit of French so not a major issue, the new footage was immense, with glimpses of the battle and Gringotts amongst other spoiler-ific scenes I won't dwell on for those who aren't familiar with the story already.

The Engish version appeared online for the first time not long after, only to be taken down again, it still being hours before the clip was supposed to "premiere" on ABC Family. But they didn't manage to remove it before I'd seen it several times, so it's all good ;)

As the series draws to a close, this is one of the last times Potter fans worldwide will be waiting, waiting for that first glimpse of new footage, the dramatic music, the experience of your heart racing on the first viewing. It's nearly over, and so it's sad that this is one of the last times I'll have a day like this where I can talk to the world about Potter because everyone's seen the trailer, or sit and watch it over and over, pausing to capture those blink and you'll miss it moments.

But with rumours that this was just a teaser, and with months until the July release date, could there be another trailer on the way? Time will tell. For now I shall enjoy this one and relish every moment.

And my "thing worth sharing" today - http://www.hypable.com - the new website with news across fandoms from Harry Potter to Twilight to Glee, written by the fans, for the fans. It's awesome, check it out!

And because there hasn't been nearly enough squeeing in this post - *squeeeeeeeeeee!* TRAILER!

Until next time,

Sarah x

Tick Tock

I can't believe April is nearly over! And more to the point that, so far, I've only posted one blog post this month. That's just not on!

So, one of the biggest weeks of the year is nearly upon us. M.E Awareness week that is ;) And so next week will be spent plotting and planning ways to get the message out there! When I started this blog, using it to promote M.E Awareness week was one of my biggest aims. I didn't have that platform last year so will be taking every opportunity I can to raise awareness.

So what are my ideas so far? Well, if I can get my act together I would love to put together and M.E Awareness video. I feel I have a lot to say and want to make it personal, so if I get over my slight phobia of the whole world seeing me talk then speaking to camera about my experiences will be one of my aims this year. I might also be talking to my local paper but nothing's set in stone. Of course on of my main focuses will be drawing attention to the closure of the M.E service in York and the paper will be the best way to do that. And of course there will be many, many blog posts!

Not only is the countdown to that beginning, but the countdown to July is also upon us. Wednesday night U.S time will see the first official trailer for Deathly Hallows Part Two! Exciting! So Thursday morning I will be (not literally) jumping about with excitement and talking to anyone who will listen about the amazing, amazing footage. You have been warned.

A while ago I posted a link to Dear Mr Potter, an online blog project collecting stories from Harry Potter fans to raise money for the HPA. Well, my story made it up on to the website! You can read it here! I was so honoured to see it used on the site amongst so many inspirational stories. Just being a part of the project is so exciting, feeling involved in the Potter community and sharing experiences with other people.

Which brings me to this week's "thing worth sharing" The Dear Mr Potter book is now available to pre-order! Featuring stories from regular fans to Potter celebs such as Evanna Lynch, I know I can't wait to read it and feel the impact of the Potter phenomenon through reading everyone's stories. You can pre-order it at this link - http://thehpalliance.org/dearmrpotter

Until next time! (Thursday probably, trailer squeeeee!)

Sarah x

A Whole Lotta Potter

This blog has been a long time coming due to the sheer number of Potter things happening recently, I literally couldn't keep up with it! Needless to say it is all very exciting to the die hard Potter fan, maybe less so to your average movie goer but that aint me and this is my blog afterall ;) With the countdown to Harry Potter and the Deathly Hallows totalling less than 100 days, it's sure to get more exciting in the coming weeks, always that feeling of "the end" on the horizon.

So are these many happenings and news stories? Where to start? I shall summarise each one as best I can with my opinion on each.

Deathly Hallows part 2 footage shown at cinemacon - film to be shortest in series.
So some lucky industry folk were lucky enough to catch a glimpse of the final installment in a 4 minute clip of part 2 footage. Whilst this clip won't be released to the general public, the decriptions are still enough to wet the appetite! On news of the film being the shortest, it's not too much of a surprise, after all they're making a whole film from one third of a book. I have faith that two hours is enough to do justice to the end of the series and wrap up all loose ends. Plus two hours is far more M.E friendly than two and a half, so I'm pretty grateful for that! ;)

Deathly Hallows part 2 test screens in Chicago
Possibly the most exciting news yet! With the release of the film still a few months away, a lucky audience got to see the film in its rough, unfinished form. With members of fansite Mugglenet managing to get their way in, descriptions soon made their way online, along with other members of the audience providing their own revies and answering questions about what they saw from fans. This in itself provides a dilemma- to read the spoilers or not to read the spoilers?! When it came to part 1 I tried my hardest to avoid spoilers, a mission which ultimately failed. This year I had a bit of a helping hand from WB who managed to ask certain people to remove their reports from the web before I had made the decision whether to read them or not, so the decision was made for me! Some of the info is still out there, and so I've stumbles across most of it, and admittedly I'm happy I did. With changes bound to be made in the adaption process, lovers of the books often end up disappointed with certain changes and certainly for me, being forwarned of these changes gives me time to accept and come to love them. Either way, this is shaping up to be and epic end to the series if reviews are to be believed.

But it's not all part 2 news! Deathly Hallows part 1 arrives on DVD this Monday, happy times! As well as that, to coincide with the release date many of the film's stars hot footed it over to New York to attend the opening of the Harry Potter exhibition, where props from the films are displayed for the public. Interviews a plenty followed, many of them available on Snitchseeker.

Just before coming on here to post this blog, I was very happy to see my email from amazon confirming my copy had been dispatched, hooray! Now to hope it gets here by the release date so I can watch it on Monday. It's in the hands of Royal Mail, don't let me down please! I've been considering reveiwing the film properly for this very blog, so maybe look out for that in future.


Now it's been a Potter heavy blog post, so for those who aren't Potter fans then I shall turn to my other favoured topic of conversation when it comes to speaking publicly such as on a blog like this - M.E. Having recently discovered that my local M.E service is no more, I will be doing all I can to raise awareness of how vital these services are and how much support and help I have receieved. I can only hope that something will get done. I may save this for another blog post, one where I can stretch my wings and properly go in to how much I was helped by the York M.E service, as it's something I that deserves that time and attention. People in similar situtations to me are going to be denied vital help with their illness due to funding cuts and it is something I feel passionately about. So look out for more on that soon as I will need as many people to spread the word as possible and you can help!

And on to this entry's "thing worth sharing"! With the Deathly Hallows DVD released this week you can find out everything you need to know, along some amazing deleted scenes at this link on Mugglenet. Enjoy!

Until next time,

Sarah x