Kent Jessica Taylor with ME begins 'Share a Star' charity

[Ember]

18 December 2013 Last updated at 22:28 GMT

A Kent woman who has spent years bed-ridden with Chronic Fatigue Syndrome, also known as Myalgic Encephalomyelitis (ME), has set up a charity to support children who spend life indoors due to illness.

Jessica Taylor, 22, from Cliffe Woods, suffers from debilitating fatigue, painful muscles and poor concentration.

Her sister, Ruby Taylor, who has helped Jessica start a charity called Share a Star, said the impact on the family was more evident at Christmas time.

Dr Charles Shepherd, from the ME Association, said some people with the condition could become totally dependent on others.

More...

 

[Firestormm]

I believe Jen Brea is hoping to include Jessie in the Canary in a Coal Mine documentary. Jessie has a very large following on her Facebook page too

 

[Firestormm]

Jessie's interview has found a more permanent home here on her website:

http://shareastar.org/jessica-on-bbc-news-south-east/

According to the interview, she has raised £4,000 thus far and is looking to gain £5,000 to become a registered charity.

Details of what her goals are about and how affected she is, can be gleaned from the website and the interview itself. She is planning a sponsored bed-push shortly I understand.

I was thinking I might contact Jessie and the BBC and see if I would be able to publish an article of this, comprising a transcript and perhaps a further interview.

We seldom are given the opportunity to see on a national television station how severe ME can affect people let alone young people.

Let me know if you think this might be something you'd appreciate seeing in the New Year.

Thanks Ember

 

[Firestormm]

@aimossy are you able to watch the video/interview from NZ or is access restricted for you? Thanks and goodnight

 

[aimossy]

yup @Firestormm

 

[Ember]

We seldom are given the opportunity to see on a national television station how severe ME can affect people let alone young people.

The World of One Room

There are many things I deal with in life and I don't complain, why should I complain? There are people starving to death in your world, mother's holding onto their loved ones in fear of them dying...why would I feel I have the right to complain in my world? I just deal with it because I have to. But the truth is a world of one room is unnatural. You see there is no guide book to tell you how to deal with the Loneliness. This is not just having a day on your own, this is EVERY DAY silence, the silence used for torture. The silence where I can hear everyone laughing and enjoying themselves but I'm too poorly to contemplate joining in. Even with the best family in the world, they come, they go. This is not as one person has suggested 'looking at things negatively', this is my reality. I'd be a fool to think otherwise. To all those people living this life, I hear you, I light a candle for you in my mind. I think of you every day. I hope it is enough. One day, just one day in the future this will change and you are all the bravest of the brave. To everyone who is kind enough to come into my world, I applaud you. I've painted stars upon my ceiling tonight...

 

[Kate_UK]

http://www.dailymail.co.uk/health/a...d-severe-ME-break-bone-just-sitting-fast.html

 

[Ember]

The World of One Room

This was the Christmas picture for you all xxx

 

[Firestormm]

http://www.dailymail.co.uk/health/a...d-severe-ME-break-bone-just-sitting-fast.html

This really was quite something to see on Christmas Day. A young person severely affected by ME, in a feature article, in the Daily Mail of all places!! Never before has ME had such exposure.

http://www.dailymail.co.uk/health/a...d-severe-ME-break-bone-just-sitting-fast.html

'I've got the bones of a 100-year-old because I’ve been in bed for seven YEARS': 22-year-old with severe ME could break a rib by just sitting up too fast

• • Jessica Taylor developed ME when she was just 14 years old
  • She was so ill she had to be fed through a tube for two years and could not speak for 18 months - was unable to move anything other than her head
  • As she has been in bed for so long, she has developed osteoporosis
  • This means she could break her back or hip just by sitting up too fast
  • She is now at home but has to have 24-hour a day care, can't leave her room and needs a hoist to move her from her bed to a chair
  • She has launched a charity called Share A Star from her bed - aims to make sick children feel special and sends them packages of goodies in hospital

A 22-year-old former netball captain says she ‘lost everything’ when severe ME caused her to be bedridden and to develop the 'bones of a 100-year-old'.

Jessica Taylor, from Rochester, Kent, spent four continuous years in hospital and has not left her bed for seven years.

While she was in hospital, she was so ill she couldn't recognise her family, had to be tube-fed and was unable to move anything other than her head.

As she has been in bed for so long, Jessica has now developed severe osteoporosis and was told by doctors that she has ‘the bones of an 100-year-old’.

She remains so weak she is barely able to sit up and just moving from her bed to a chair requires the use of a hoist.

Jessica told MailOnline: ‘My life is a world of one room. The ME caused me to lose everything in the end.

‘I’ve got a fight on my hands and I believe I am going to get better.’

Jessica first fell ill when she was 14.

She suffered a bout of the flu which she never recovered from and, despite trying to push herself, her health rapidly deteriorated and within nine months she was bedridden...