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The Sleeping Girl of Turville: The True Story of a Girl Who Fell Asleep for Nine Years.

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I love finding my ancestors, and you can't get stranger than this tale of my twice great aunt. Life is stranger than fiction!

19th century girl the sleeping girl of turville.

19th century girl the sleeping girl of turville.

A Ninteenth Century Mystery.

On May 15, 1859, a child was born, She was the tenth child from a family of twelve. Her name was Ellen Sadler. there was nothing particularly remarkable about her or any of the other children. Until Thursday, March 29, 1871, Ellen went to bed as usual. And didn't wake up.

And just like sleeping beauty, she didn't wake for nearly ten years.

The story starts in a sleepy little village in the heart of the English Countryside. Turville is situated in the Hambleden valley, in between Oxford and Buckinghamshire. About 400 people lived in the scattered parish, and the village was mainly dominated by the Bailey family who lived at Turville Court.

At the corner of school lane there lay an old cottage, that is still there. It was owned by a farm labourer called Frewen, his wife Ann, and her children, the children were from her first marriage to a man called Sadler.

The day started off normally, Frewen and the children got up and went about their business, but it wasn't until they realized that Ellen wasn't getting ready, that they began to suspect there was something wrong. Ellen was a quiet child most of the time, sedate, and thoughtful, She was also known to be dreamy, and had a listless manner about her which could be quite disturbing.

Sometimes her distant expression and melancholy ways, made her brothers and sisters leave her to her own thoughts, knowing that she didn't want to join in with their childish games and sports. She didn't have any friends and most of the time, she just sat at the bedroom window looking out at the world.

She had a great reverence for sacred things and was always good and obedient, but it troubled her mother that she would sit for hours, by the fireside, with her head in her hands, staring at the flames and watching the shadows as they danced across the walls.

In fact the only time she would show any animation was when her father would return from the nearest tavern slightly the worst for wear, and she would give him a good talking to!

At eleven years old, coming from an impoverished village, she had to start work. Her parents sent her to Marlow to become a nursemaid for a family with two young children.

This employment didn't last for long. Her fits of somnolence became regular and she became so stupid and useless (the words used at the time), that her mistress could not keep her.

After she had been discharged from the job, she started to complain about a constant pain in her head, evidently, it was much more than just a normal headache,

Her parents became worried and sent her to a doctor in nearby Marlow, who diagnosed an abscess.

Poor little Ellen was sent to Reading hospital and stayed there for seventeen weeks. Feeling a little bit better, she was sent home to Turville on Tuesday, March 27, 1871.

Two days later, on Thursday, Ellen went to sleep.

Samuel Melton Fisher Asleep 1902 Oil

Samuel Melton Fisher Asleep 1902 Oil

Astounding, Physiological Phenomena

A Dr Hayman, from nearby Stokenchurch, rushed in his pony and trap, as quickly as he could, but by the time he got there, she couldn't be roused. as she lay there, apparently dead, her almost imperceptible breathing was the only thing showed she still had life in her body.

So began what even the great paper, The Times, called, 'one of the most astounding, inexplicable, physiological phenomena ever known'.

soon medical men and gentry were flocking to Turville to examine the sleeping girl. Ellen's mother didn't mind these visits, even encouraging them in fact. But there was a curious occurrence when she told one visitor that, she couldn't let him see her daughter yet, as she 'had to get her ready'

Eventually, when the men were allowed to see her, this is what they saw.

The Free Press of the time graphically explained.

After climbing the rickety stairs, and walked along to the room with the sloping roof, we saw, in the smaller bed, a girl laying on her left side, with her hand on the pillow under her head. A position she was accustomed to being in before she was afflicted.

The paper quotes: Her soft dark brown hair was confined in an old net. and appeared to be very matted, a condition her mother explained by saying she did not want to comb it for fear of disturbing her.

'This threw her pale face into greater relief, her eyes were sunken, and the appearance at a distance was that of death.

Many people who came to see her wanted to take a lock of her hair as a souvenir. Her mother was willing to grant this until all the people's demands began to diminish the supply. It was only then that she refused to cut any more.

The strange thing was that her breathing was regular and natural, and her skin was still soft and her body was warm. Her pulse was slightly fast, but that was the only strange occurrence for somebody asleep.

Evidently, her body was still flexible but she was emaciated. Her feet and legs were the only part of her that was icy cold, which was strange. Her mother placed a hot water bottle beneath them to try to keep them warm.

Year after year, people came and began to leave what was called small donations, or 'slight acknowledgements' as they were beginning to be called.

Suspicion began to grow that maybe this was a hoax, and the people began to turn against the family.

The main trouble was the fact that, according to her mother, Ellen was being kept alive by a small amount of port wine and sugar which she administered to Ellen through two small teapots, three times a day. At first, she could open her mouth slightly and take a small spoonful, but after about fifteen months, her jaw became fixed and they had to use the teapots, pouring the mixture into the corner of her mouth, where she had a small opening because of a missing tooth. Sometimes a Small amount of milk was given to her, but this was all she had.

By this time the medical world was baffled. Rumours exist that among the elder Turville residents that Royalty even took an interest in her.

The prince of Wales, the future King Edward, visited her and gave her the 'laying on of hands' which people in those days believed would cure the afflicted.

By this time, the doctors who were attending to her began to realise that the local population was finding the whole thing very suspicious. So on entering the house, usually at unexpected moments to catch the family out, they would very carefully hide pointed needles up their sleeves so as to prick Ellen on her legs and arms to try and make her react. One doctor even suggested something called galvanism, in other words, electric therapy. But nothing woke her.

The offers of money to come and see Ellen was quite substantial by this time. Ellen's mother was earning two pounds a week through donations. This would be about one hundred pounds in modern money. You can understand peoples scepticism.

Eventually, someone, probably out of spite, wrote to the highest echelons of government, and the home secretary of the time demanded an investigation. This didn't come to anything as they were told that the parents were not deliberately asking for money. The people became frustrated and the whole thing simmered on until after a few years, in late May 1880, after a particularly bad thunderstorm, Ellens mother came in from the fields where she had been working, and feeling frightened and jumpy consequently had a heart attack and died before the doctor could reach her.


leaning over bed painting

leaning over bed painting

Then something Strange happened.....

The inquest which was held at the Bull and Butcher pub was straight forward, but of course, everybody wanted to know what would happen to Ellen. Dr Hayman was again confronted about his diagnosis and defended himself by saying that Ellen was definitely paralysed and unconscious. Still, they thought it a confidence trick. People came forward and said they had seen Ellen walking through the graveyard at night, and looking through the bedroom window when she thought there was nobody looking.

It was decided that Ellen would be looked after by her sister Elizabeth Stacey, wife of a bricklayer.

Then a strange thing happened. Five months later, Ellen began showing signs of waking. On New Years Eve 1880, more than nine years after falling asleep, the Free Press broke the news that at last the sleeping girl of Turville was awake. She was conscious and speaking.


Waking Up.

Ellen was twenty-one years of age. But she spoke and acted like a child. She had absolutely no memory of those nine strange years.

After adjusting back into the real world, Ellen went to stay with her Aunt, a Mrs Blackwell and earned her living working with beads. A few years later she married a farmer from Reading and moved out of the district. Later dying in obscurity.

Was it Narcolepsy? At the time the Doctors wouldn't have known about the illness. They are still not sure today.

Like all strange mysteries, we shall never know the truth.

Copyright Nell Rose this is the original article any other site showing this is a copy and should be reported as stolen.

Turville Buckinghamshire. The cottage on the right is where Ellen lived, and of course the rest of my family too.

Turville Buckinghamshire. The cottage on the right is where Ellen lived, and of course the rest of my family too.

This article is accurate and true to the best of the author’s knowledge. Content is for informational or entertainment purposes only and does not substitute for personal counsel or professional advice in business, financial, legal, or technical matters.

© 2009 Nell Rose

Comments

Nell Rose (author) from England on September 16, 2020:

I think there was probably something going on rather sneaky Cheryl, lol! knowing my family it probably was a scam, but we do know that she was suffering from something.

Cheryl E Preston from Roanoke on September 15, 2020:

I cannot imagine how she survived without proper nutrition all those years.

Nell Rose (author) from England on May 17, 2020:

Thanks MG yes I can see the reference. We still don't know exactly what happened, whether it was real or a scam, but that's families for you, lol!

MG Singh emge from Singapore on May 16, 2020:

The moment I saw the title I was reminded of the famous story of Rip Van Winkle who slept for 20 years. This is a fabulous story and it is not fiction. Thank you for bringing it out.

Nell Rose (author) from England on May 16, 2020:

Thanks Sonia, I am glad you liked it. Yes we do tend to have strange relatives sometimes, lol!

SDB from Australia on May 15, 2020:

Fascinating story and mystery, I enjoyed it immensely.

Nell Rose (author) from England on April 25, 2019:

Thanks Debbie, you may be right! When she came to work for my family she did keep falling asleep. Then when she went home this happened. Thanks for reading.

Debbie Hintz-Deichler on April 24, 2019:

After having a bad brain injury 2 years ago wonder if she fell and hurt herself at school or if she had a bleed on the brain that no one knew of. Very interesting story. I believe the story. Medicine of today was not what it was back then. I just wonder if she jarred her brain somehow.

Nell Rose (author) from England on January 04, 2019:

Thanks, Nicole. She was my GG Aunt and I still can't figure it out! lol! thanks for reading.

Nicole K on January 03, 2019:

What a weird mystery! I too am wondering how she survived that whole time without food and water. Very strange. Thank you for writing about it and bringing the story to my attention. I will have to look this up and research the story further.

Nell Rose (author) from England on December 11, 2018:

Thanks Jeanette, my skepticism is on radar too! lol! thanks for reading.

Jeanette on December 10, 2018:

I’m skeptical..... no one can go so long with no food n especially no water. She would not last but a few weeks! N if she is not able to be roused, how did she swallow the port etc? I’m in the medical field n have a little idea of how the body works.....no way!! Mom was doing something to that child..... Interesting story though.

Nell Rose (author) from England on December 06, 2018:

Yes we certainly have some strange people in my family Tim! LOL! thanks again for reading.

Tim Truzy from U.S.A. on December 04, 2018:

Hi, Nell,

You have me this evening. I'm into your stories. I am curious about the Miracle of the Vision of Lords next.

But what a wonderful and curious story this was about Ellen. To sleep so long and then have no recollection is strange enough, but how she managed to maintain life is even more amazing.

You have an interesting family history, my friend from across the ocean. Thank you for sharing a well written, thought provoking story which still leaves me scratching my head in awe.

Much respect to a great story teller and kind writer,

Tim

Nell Rose (author) from England on December 04, 2018:

I think she must have drugged her to be honest. I do know that Ellen was ill as a small child, kept sleeping etc, but Ann the mother played on it. thanks Charity.

charity mtisi from Johannesburg on December 04, 2018:

If it was, then, she must have had some kind of power. Makes you wonder what really happened.

Nell Rose (author) from England on December 04, 2018:

I does make you wonder if it was the mother who was doing it! She was my great aunt and I still don't know! LOL! thanks again Charity.

charity mtisi from Johannesburg on December 04, 2018:

Its a strange story. If only the mother would have lived to see her daughter wake up.

Nell Rose (author) from England on May 27, 2018:

lol! thanks Virginia, yes she was quite a girl wasn't she? And my great aunt!

Virginia Allain from Central Florida on May 26, 2018:

Quite unique bit of history. It does make you wonder.

Nell Rose (author) from England on April 24, 2018:

Thanks Rodric, that's very kind of you to say so.

Rodric Anthony Johnson from Surprise, Arizona on April 23, 2018:

This is a very interesting bit of history. I would vote it up and share if we still had that ability on hubpages.

Nell Rose (author) from England on June 08, 2017:

Thanks Mary, yes I wouldn't believe it myself if it wasn't family history! LOL! thanks!

Mary Wickison from Brazil on June 07, 2017:

It is amazing to think the body could survive on port, sugar and a bit of milk. I am surprised she still had the use of her limbs.

Even now, with all the medical advancements, there are still oddities that doctors just don't know about.

Such an interesting piece of family history, thanks for sharing this with us.

Nell Rose (author) from England on November 29, 2016:

Hi Helen, welcome to the family! lol! Ellen was my great great aunt! can you give me any more info? are you from the Blackall side?

thanks!

Helen Cruickshank on November 29, 2016:

Ellen Sadler was my mothers grand mother my great grandmother

Nell Rose (author) from England on December 09, 2015:

Thanks Martie, she was amazing wasn't she? and she was my aunt! lol! my family just get weirder!

Martie Coetser from South Africa on December 08, 2015:

What an extraordinary and captivating true story! Thanks for sharing, Nell :)

Nell Rose (author) from England on November 06, 2015:

Thanks Mary, she was my Great Great Aunt! LOL! I am doing my family tree and found her, I knew she was there somewhere but not sure exactly who or what, but yep great great aunty Ellen Sadler!

Mary Craig from New York on November 05, 2015:

I must've been sleeping for it to take me three years to find this hub! What an incredible story. Imagine sleeping that long. It's a wonder she survived at all.

Of course your way of writing makes this a pleasant read.

Nell Rose (author) from England on November 05, 2015:

Hi Barbara, I actually wrote this from family memories! Ellen sadler was my great grandmothers sister! we grew up with the story, I wrote about it on here, wikipedia (Steve) wrote to me and said, Who and how? LOL! so I gave him the info, and I have my link on wiki! small world eh? thanks for reading, nell

Barbara Badder from USA on November 05, 2015:

Thank you for another fascinating story. Where do you find theses?

Nell Rose (author) from England on March 27, 2015:

Thanks amy!

amylove on March 27, 2015:

Okay this is weird and I know now sleepy beauty is real but I never heard of this but cool

Nell Rose (author) from England on September 17, 2014:

Thanks Colin, yes you may well be right! back then it would have seemed really strange, that's why they had so many visitors, and of course her mother played on that too, taking money for her daughter, I don't blame her, times were hard back then, thanks so much for reading about one of my family members, nell

Colin323 on September 17, 2014:

What an interesting story, and told well by you. I hadn't heard of this case before. It sounds very much like narcolepsy, but self-induced in an attempt to disconnect with the world.

Nell Rose (author) from England on June 25, 2014:

Thanks so much Hankscita, nell

Sandy from Florida on June 25, 2014:

Interesting, up voted and pinned.

Nell Rose (author) from England on September 29, 2013:

Hi Au Fait, yes I remember reading about the people who were buried before they checked whether they really were still alive, that was terrible. the strange thing is that the reason why I wrote this is because she was related! lol! its been plagiarised so many times that I can't catch up with them sadly, and thanks so much for pinning it, glad you liked it, nell

C E Clark from North Texas on September 29, 2013:

Very interesting story. Hard to believe this girl survived without nourishment or fluids for such a long time. Pouring things into her mouth seems odd. One would think she might choke on them since most people aren't able to swallow when asleep. Surprised scientists haven't tried harder to solve this mystery.

I've heard that people sometimes seem as if they are dead and in the past have been buried only to become conscious again and try to escape their grave. Of course with modern embalming this isn't likely to happen, but prior to the adoption of that process it did happen now and then. More people are choosing natural burials with no embalming these days, so I wonder if accidentally burying people who appear dead but really aren't will start happening again . . .

Voted up, interesting, pinned to my 'Unsolved Mysteries' board (which I just created to accommodate this article) and will share with my followers.

Nell Rose (author) from England on January 16, 2013:

Thanks LastRose, glad you liked it, nell

LastRoseofSummer2 from Arizona on January 16, 2013:

OK, that was kind of scary! There's no knowing, I guess, what the real cause was. But this was a fantastic hub. Thanks a lot!

Nell Rose (author) from England on August 11, 2012:

Hi Integrity, thanks for the vote and the read, nell

IntegrityYes on August 10, 2012:

I definitely voted up,Nell. It is very emotional.

Nell Rose (author) from England on July 09, 2012:

Hi femmeflash, lol! yes I totally understand, I do think it was a genuine illness, but I think that maybe ellen did get up occasionally and not sleep all the time, she did recuperate after her mothers death, so that makes me think it was a hoax, or not? um! lol! thanks for reading, cheers nell

Nell Rose (author) from England on July 09, 2012:

Hi femmeflash, lol! yes I totally understand, I do think it was a genuine illness, but I think that maybe ellen did get up occasionally and not sleep all the time, she did recuperate after her mothers death, so that makes me think it was a hoax, or not? um! lol! thanks for reading, cheers nell

Nell Rose (author) from England on July 09, 2012:

Hi femmeflash, lol! yes I totally understand, I do think it was a genuine illness, but I think that maybe ellen did get up occasionally and not sleep all the time, she did recuperate after her mothers death, so that makes me think it was a hoax, or not? um! lol! thanks for reading, cheers nell

femmeflashpoint on July 09, 2012:

Nell,

This was my first read regarding Ellen Sadler, and found it intriguing.

I would quickly lean toward hoax, or partial-hoax, but I can't go all the way with it because of the descriptions of her physique; how depleted and emaciated she became. It'd be hard to force a youngster to pretend to sleep for hours on end, not react to stimulus, and get continued cooperation while being starved.

Just when you think you've hard it all ... lol.

Awesome hub!

femme

Nell Rose (author) from England on June 26, 2012:

Hi biblechick, yes it could very well have been, back then they were not sure exactly what it was, but these days they would be able to diagnose her quickly, thanks for reading, cheers nell

biblechick on June 25, 2012:

Dont get me wrong that is a great story, but is there any thought to it being a coma.

Nell Rose (author) from England on June 07, 2012:

Hi penHits, thanks for reading, yes she could well have had brain damage, but I do believe that after the mother died she woke up and got married herself, so I believe she was probably not as bad as they made out, one of these days I will go and investigate further as she was a relative of mine, well, the families, thanks!

Amy L. Tarr from Home on June 07, 2012:

Perhaps it was a coma? The locked jaw is not uncommon to someone in a coma. My Mom passed from colon cancer and she was sent home with hospice care. The last two days she was in a mild coma and her jaw locked. We had to rub her medicine around her mouth with a medicine dropper. Since someone in a coma isn't moving around, the medicine (or in this lady's story, wine and sugar mixture) would be absorbed into the blood stream through the gums. It would also explain why she seemed "child like" when she woke up. She probably had some brain damage.

Nell Rose (author) from England on May 20, 2012:

Hi Cathleen, thanks for reading, cheers nell

Cathleen J Wyatt from Reno, NV on May 19, 2012:

Another great hub! Thanks!

Nell Rose (author) from England on May 14, 2012:

Thanks bac!

Anne from Spain on May 14, 2012:

Yep. sounds about right. Great story telling though. Thanks.

Nell Rose (author) from England on May 14, 2012:

Hi bac2, lol! Its one of those things we will never know. To be fair I believe ellen sadler did have an illness that kept her asleep for a while, but her mother, Ann, probably played on the whole thing, thanks for reading, cheers nell

Anne from Spain on May 14, 2012:

Hi Nell. What another fascinating story. Reading some of the comments I see many of them think it was a scam..even you. I´m undecided because how could she not react to needles being stuck in her and electric shocks?

on the other hand how could she have survived if indeed in a coma without the medical care we have today...very strange. OH well voted up awesome and will read more later.

Nell Rose (author) from England on April 16, 2012:

Hi, old albion, thanks so much, I am so glad you liked it, and for reading all the others too. This was my first hub I ever wrote, believe it or not! lol! I have been sitting on this story ever since I was a young girl as Ellen Sadler was a relative of mine! still trying to figure out exactly who she was related too, I believe it was my grandfathers step brother, but not sure, thanks so much again, nell

Graham Lee from Lancashire. England. on April 16, 2012:

Hi Nell. What a great hub. An amazing story how did she live through all that time. Your ability to embed your other hubs is brilliant. I found myself clicking through one after another! I have been here reading for two hours. That shows the quality of your work. voted up / awesome.

Graham.

Nell Rose (author) from England on March 30, 2012:

Thanks grinnin, glad you liked it, cheers nell

grinnin1 from st louis,mo on March 30, 2012:

Great hub- interesting and intriguing! Will definitely keep reading your stuff!

Nell Rose (author) from England on March 15, 2012:

Hi, susie, yes you are probably right, I would imagine the the sleeping girl of turville was just a complete fake, saying that, I think it was genuine at the beginning, but then the mother realised that she could make money out of it! lol! thanks for reading, and your feedback, cheers nell

susie on March 15, 2012:

i believe that it was fake there is no way that a young growing girl could go for nearly nine years and live on a bit of sugar water she would have died of dehydration and malnutrition

Justin W Price from Juneau, Alaska on March 05, 2012:

good point pc. I hand't considered that before...

Nell Rose (author) from England on January 24, 2012:

Hi, Pc, yes exactly, thats why I believe it was a really big scam. Not to start with, I think Ellen was genuinely ill, but when Ann her mother realised the fact that people would give money to see her, then it went too far, and she kept the poor girl prisoner or made her ill deliberately, thanks again, much appreciated, cheers nell

Nell Rose (author) from England on January 24, 2012:

Hi, ishwaryaa, thanks for reading, its still a mystery today, what happened? how did she do that? etc, fascinating stuff! lol!

Tony Lawrence from SE MA on January 24, 2012:

I would expect that her muscles woud have atrophied.

Ishwaryaa Dhandapani from Chennai, India on January 24, 2012:

Another strange yet amazing story from u! The Real Life Sleeping Beauty! Thank u for sharing this Interesting story with us. Vote up.

Nell Rose (author) from England on January 05, 2012:

Hi, wanderlust, thank you so much, its strange that she was related to me in some way, only by marriage by her father I think, but still, what a story! I am actually going to look into it more and see if I can find her relatives today! thanks for reading, and I am glad you liked it, cheers nell

Elna J. Navarro from Philippines on January 05, 2012:

You're story didn't give me a chance to take a break until I finished reading it. It was like a tale of the sleeping beauty and the only absence there was the prince who was supposed to wake her up. I love it!

Nell Rose (author) from England on December 16, 2011:

Hi, fpherj48, sorry it took me so long to answer, yes this is totally true! she was a relative of mine and it is very famous in Turville where she was born, I knew the story growing up, and funnily enough there wasn't a book written about her, strange I know, I do know that an author did mention her in a book about Turville, but I knew the story because of my connections and grew up listening to the tale, and of course collecting all the snippets of information from the local papers, strange story, but very true! lol! thanks for reading, cheers nell

Suzie from Carson City on December 15, 2011:

All that is going through my mind at the moment is, For Real? Seriously? 9 years? I have a hundred questions. Never heard this stroy before today...might there be a book written of this incident? Up & awesome...for sure!!

Nell Rose (author) from England on December 10, 2011:

I can't find it, not sure if he has taken it down, but if you look up any hub about the Illuminati, it should mention it, okay? Good luck!

Nell Rose (author) from England on December 10, 2011:

Okay, I will go see If I can find it, shouldn't be too difficult as long as I can remember what he called it! lol!

Justin W Price from Juneau, Alaska on December 10, 2011:

sure, if you can send over a link to that hub, i'd be stoked to check it out

Nell Rose (author) from England on December 07, 2011:

Hi, PDX, Wow! Really? I think it was mickey dee who wrote a hub about how all the Presidents and British queens and kings were connected, even Brad pitt! you should look further into your background, you may very well be surprised! lol! thanks again nell

Justin W Price from Juneau, Alaska on December 07, 2011:

yes. But still interesting. I'm an 8th cousin of US President Calvin Coolidge ;-)

Nell Rose (author) from England on November 17, 2011:

Hi, PDX, no, luckily she was a relative by marriage, from what I can gather, through all the bits and pieces of family gossip, is that my gran's uncle was frewen, and he was the step father of Helen, complicated stuff! lol

Justin W Price from Juneau, Alaska on November 16, 2011:

related? Have u ever had any bouts of prolonged narcolepsy?

Nell Rose (author) from England on November 13, 2011:

Hi, Sage, I was the first person to put it on the internet, it had been written about a little bit, but only old newspaper cuttings, the reason why I wrote it is because I have grown up knowing the story as she was related to me, going back a few generations, thanks for reading it, much appreciated, cheers nell

Sage Williams on November 13, 2011:

Awesome job on this hub. I really enjoyed reading it and had never heard of this before.

Sage

Nell Rose (author) from England on November 13, 2011:

Hi, PDX, thanks again for reading, it was a mystery, and I would love to know the truth about it as we were related!

Justin W Price from Juneau, Alaska on November 13, 2011:

what a strange and interesting tale. Thanks so much for sharing!

Nell Rose (author) from England on November 13, 2011:

Hi, cazzart that must be awful for you. I do understand about the sleep paralysis, I have a thryoid problem and before it was diagnosed I had terrible sleep paralysis, and the hallucinations are terrifying, you are a very brave women, I do hope they can find some sort of relief for you, and others with this condition, take care nell

cazzart from England , west Yorkshire on November 12, 2011:

the sleep paralysis should read I can not move .... not can :-)

cazzart from England , west Yorkshire on November 12, 2011:

It is difficult yes-

Narcolepsy is caused by a missing hormone (hypocretin) that supplies the brain hypothalamus - to regulate sleep - narcoleptics have non or very little hypocretin- there for no control of when and how long we sleep ( that's a very quick explanation )

There is no cure-the hormones have gone- it is a disease that I will always have.

I take medication to keep me awake- Modafinil and dexamphetamine- they are stimulants,amphetamine's ... I take them daily to help keep me awake 4x 200mg Modafinil 4x 5mg dexamphetamine - I'm like a walking maraca ;-) ... They do help, I still sleep a lot and always feel sleepy, never feel completely awake and full of energy ( I crave for just one day like that ) and I still have bouts of sleeping 3+days ...

other side affects of narcolepsy are sleep paralysis , where you wake up but can move , often accompanied with Hypnagogic or hypnopompic hallucinations - the only way I can explain this is it's like being stuck- unable to move - aware that I am awake - and then..... the dreams (hallucinations) happen and it can be very very scary .having nightmare visions around you but unable to move or wake up...

I often can not wake up- knowing full well I'm asleep,knowing I have to get up-that the alarm is going or my son is next to me and I still can not wake- I slip in and out of dreaming and reality every inch of me trying to pull myself out of the horrible limbo of sleep,dreaming and waking - a constant cycle that can last hours- the dreaming I have is very vivid and again can be very frightening - by the end of it when I do wake up I'm exhausted, mentally , physically and emotionally ...

I also hallucinate whilst awake... ( dreams coming into reality ) so I can be doing something normal and then I hallucinate ... everyday I see giant bugs, faces , people and hear things ... these are the 'smaller' hallucinations for me .... then I have the big ones... the ones that scare me silly ... they can last a while as well .... it's hard at times to tell what is and isn't a hallucination ....

then there is automatic behaviour - it's when you carry on doing something but your mind shuts down and goes to sleep- so for example ... having a conversation with someone and having no recollection of it .. I once put £20 in my sons toy draw, right at the back.... at the time I thought I had lost the money... a few weeks later my son found it ..... so at some point I took the £20 out of my purse , pulled out my sons draw and put the £20 in there... needless to say my son got the £20 as he thought we had hid it there for him as a surprise - he was SSooo excited when he found it ;-)

I have done many other things - I don't like this part of narcolepsy at all- it makes me feel unsafe ....

then there is caterplexy

Nell Rose (author) from England on November 11, 2011:

Hi, carrie, it seems that way doesn't it? lol she certainly was a mystery, thanks again nell

Nell Rose (author) from England on November 11, 2011:

Hi, carrie, it seems that way doesn't it? lol she certainly was a mystery, thanks again nell

carriethomson from United Kingdom on November 10, 2011:

hi nell this was such a intresting story!! the fairy tale sleeping beauty is not completly fantasy then!!

carrie

Nell Rose (author) from England on November 05, 2011:

Hi, Anjali, thank you so much for reading. Yes it was sad that helen didn't get to see her mother, but it was very strange that she woke up shortly after, cheers nell

Anjali on November 05, 2011:

this was really interesting.. sad that girl didnt get to see her mother who has done so much for her when she was asleep.

Nell Rose (author) from England on August 27, 2011:

Hi, Paradise, yes I agree, I would love to know exactly what happened, thanks so much for reading it, cheers nell

Paradise7 from Upstate New York on August 27, 2011:

Terrific hub, and very interesting. It would have been so strange for the girl, upon waking up.

Nell Rose (author) from England on May 12, 2011:

Hi, Carrie, that must be so difficult for you, I have read about it and seen it on TV, is there any medication that you can take that will help? thanks for reading my hub, cheers nell

cazzart from England , west Yorkshire on May 11, 2011:

a great story , well written ... I enjoyed the read :-)

I have narcolepsy .I have had it from being a young child ....

my average day consists of me sleeping 18-20 hrs a day ...... often I sleep solid for 4-7 days. being woke up by my partner to eat and drink , even then he has difficulty in waking me , and sometimes does nit succeed - I often wonder WHEN I would wake up on my own if he didn't do it ....

there is a sleep disorder called KLS kliene leaven syndrome .... where people sleep for 1-2 (sometimes longer )weeks solid (being woke up for food & drink) then after thus loooong episode of sleep they are "back to normal " wide awake ...... normal ..... then say a month a few months later the sleep starts again.....

with KLS the sleeping lasts long but then stops with long breaks inbtween ... breaks can last months

with narcolepsy the sleeping is everyday , no breaks ....

i don't know if the story is true ...... but I really enjoyed reading it .... thanks for sharing

X Carrie X

Nell Rose (author) from England on May 04, 2011:

Thanks Eiddwen, I am glad you liked it.

Eiddwen from Wales on May 04, 2011:

I can't believe it Nell but I missed this one.

I am so glad that I found it though.

Brilliant as always and written so naturally in your own unique style.

Here's to many more years of hub sharing.

Take care

Eiddwen.

Nell Rose (author) from England on March 08, 2011:

Hi pan, I love strange stories! lol thanks again nell

April Seldon from New Orleans on March 07, 2011:

Thats an interesting and strange story. I just love your hubs.

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