Crazy narcolepsy

Sunday, April 7, 2013

Image courtesy of Jacqueline Barkla and words by me!

at 1:39 AM

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This blog began in 2013 as a platform to share information and resources, consider sociological / life effects aspects of narcolepsy and promote discussion on the issues that have historically attracted little attention. I truly believe that open discussion is a stepping stone to being more accepting of ourselves and offers vital opportunities for others to benefit from the experiences being shared.

It was created at a time when I needed to become my own best narcolepsy advocate, in order to challenge and improve the poor healthcare I was receiving. Educating myself in all things narcolepsy enabled me to successfully improve the medical support I receive, take an active role in consultant discussions, leading to improved symptom management and a significant increase in my quality of life. I hope that this blog provides useful information and interesting articles, to help others build their knowledge of the condition.

Pages

Home
My sleepy story
Why blog?
What is narcolepsy?
The Spoon Theory - A good way to explain narcolepsy to others.
Where to find info, support and other PWN
Narcolepsy-Focused Guides / Information Sheets
Narcolepsy-Focused Research
Post-it for Narcolepsy
Dear Diagnosis - A letter to my younger self
Let's talk about sex baby...
What if I didn't call it narcolepsy...?
Everyone gets tired, right?
Public perception and its affect upon sufferers
The Lazy Label / Change in awareness strategy
Good Grief - the denial to acceptance process
Dating with narcolepsy
Twenty seconds of courage
Sanely hallucinating - neurological or psychological?
Living the Nightmare (Implications of bad dreams upon mental health)
Small change in hallucination, big change in fear.
Night Terrors or Hallucinations?
How hallucinations scare me
Delicate balance between control and unmanageable
Ebaying the Narcolespy (raising awareness)
Narcolepsy: Not Alone Campaign
The BOND Study - Part 1 (Introduction & Physical Comorbidity)
The BOND Study - Part 2 (Psychiatric Comorbidity)
New survey for non-sufferers of Narcolepsy & Cataplexy
Latest research into Narcolepsy (Press Release June 2013)
Narcolepsy UK 2013 Conference / Public Meeting - Narcolepsy from a Patients Perspective
Narcolympic cartoons
FDA Public meeting Overview
Articles about Narcolepsy
Wise Words
Should children of PWN be given the flu vaccination?

Sunday, April 7, 2013

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