A Reluctant ContortionistA Reluctant Contortionist
A blog about being too bendy. To raise awareness of Ehlers Danlos Syndrome.
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  • What is EDS?
  • What is POTS?
  • My Story
    • Being diagnosed with POTS.
    • Being diagnosed with EDS.
    • Being fed through tubes.
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One Year of ‘A Reluctant Contortionist’!

November 29, 2015 By A Reluctant Contortionist in Ehlers Danlos Syndrome 14 Comments Tags: Ehlers Danlos Syndrome, Parenteral Nutrition, POTS, Reluctant Contortionist

First Birthday Graphis

In my very first post ‘Hello World’ I said that I would write this blog for a year, but if I wasn’t getting much interest I would then turn it into a Star Wars fan site. Well, with a hotly anticipated new Star Wars film just 3 weeks away, a fan site is very tempting! […]

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‘Extra Time’

November 18, 2015 By A Reluctant Contortionist in Ehlers Danlos Syndrome 8 Comments Tags: Ehlers Danlos Syndrome, Parenteral Nutrition, POTS, Reluctant Contortionist

stop watch

The charity Ehlers Danlos Support UK publish a magazine titled ‘Fragile Links’. I wanted to write something for the magazine to share some of my experiences living with EDS, (and to publicise my blog a little 🙂 ). My story spans over two decades, which would have made for a very long article. So I […]

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Two Years of Parenteral Nutrition

August 30, 2015 By A Reluctant Contortionist in Ehlers Danlos Syndrome, Parenteral Nutrition 10 Comments Tags: Ehlers Danlos Syndrome, Parenteral Nutrition, POTS, Reluctant Contortionist

Homer fat and happy shopped final b

Two years ago this month I weighed just 7 stone and 1 pound. I’m over six foot tall so I had a waistline like a dehydrated supermodel. I’d been unable to eat normal food for some time, so I was being fed liquid food through a tube into my stomach, called a PEG. I found […]

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Letters from my MP

July 12, 2015 By A Reluctant Contortionist in Ehlers Danlos Syndrome 2 Comments Tags: Ehlers Danlos Syndrome, Parenteral Nutrition, POTS, Reluctant Contortionist

House of Commons

Shortly after the general election I decided to write to my local MP, Sir Paul Beresford. I wanted to ask what plans the new government has for funding and encouraging research into Ehlers-Danlos Syndrome. I also wanted to highlight the importance of early diagnosis and appropriate treatment of EDS to avoid long term disability. I […]

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The EDS International Registry – Update

July 2, 2015 By A Reluctant Contortionist in Ehlers Danlos Syndrome No Comments Tags: Ehlers Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, Reluctant Contortionist

Globe pic 300px

Would you like to find a friend who knows exactly what it’s like to live with EDS? Well the Ehlers Danlos International Registry aims to help people do exactly that. ‘We want to facilitate the connection between one EDS sufferer and another, in hopes of helping people deal with their illness and the way it impacts their […]

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Recent Posts

  • The 12-24 campaign has raised £201,000!
  • 12-24 in The Charity Film Awards!
  • ‘The Big Bum-ble’ Sponsored Walk – Update
  • The 12-24 Film
  • Allergy Testing
  • A New Hickman Line
  • A Blog Makeover
  • Are All Administration Sets Sterile?
  • Applying for a Personal Independence Payment (PIP)
  • Home Artificial Nutrition Week – UPDATE
  • My New Wheels…
  • Dem Bone Scans – Update
  • Could Nutritional Supplements Improve the Symptoms of EDS?
  • An article for the PINNT Newsletter
  • Happy New Year!
  • One Year of ‘A Reluctant Contortionist’!
  • ‘Extra Time’
  • Two Years of Parenteral Nutrition
  • Letters from my MP
  • The EDS International Registry – Update
  • EDS and Anaesthetics
  • ‘A Rough Guide to Hospital’
  • EDS Awareness Month – UPDATE
  • Buzzfeed’s 31 Random Facts About Ehlers Danlos Syndrome
  • Dem Bone Scans
  • Faulty ‘Contact’ Page! Sorry…
  • ‘Issues With My Tissues’ Documentary
  • My New Year’s Resolutions
  • Twelve Days of Christmas …in hospital
  • Thank you Hannah Ensor
  • Hello World!

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