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

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