I always end up missing these types of awareness-raising dates because I don’t find out about them until usually the exact day, then I feel a responsibility as someone with narcolepsy (or said other condition) to write something really profound, or to write something very informative. This is especially true with narcolepsy, because I am in the process of writing an essay about what my GP refers to as the “Pandora’s Box” of my neurological diagnoses. I then don’t have time or can’t figure out what to say, miss the event, and another year goes by without me saying or doing anything in relation to any of my conditions.
So here it is, still 2 days late, so let’s call this World Narcolepsy Awareness Week rather than Day.
You have homework this week. Your homework takes about 5 minutes. All you have to do is Google ‘Narcolepsy’ and click on a scientific or charity-based web-page. I have included some links below as examples, making ti even easier for you. I would like you to learn one thing you didn’t know about Narcolepsy and share it with me, either in an email, a comment, a message or on your own social media using the hashtag #WorldNarcolepsyDay
Links
https://www.narcolepsy.org.uk/
https://www.nhs.uk/conditions/narcolepsy/
https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Narcolepsy-Fact-Sheet
Further Reading
If you want extra homework points (i.e. a free sticker sent to you in the post) here are some books by Neurologists that I have found really interesting in terms of narcolepsy/cataplexy. They are also just great fun to read because neurologists, for whatever reason, all seem to be slightly bonkers in a good way.
I was so surprised by my diagnosis, and it turns out I knew absolutely nothing about what Narcolepsy actually is, how it works or what the actual practical symptoms are. All I could think was, “I don’t fall asleep in my porridge so how can I have narcolepsy?” In fact, below is a photo of a notebook I found from 2018 when the concept of Narcolepsy was first mentioned to me by my neurologist, before I went to the sleep centre.
The information available is few and far between. The Oliver Sacks books below are more about neurological “atypicalities” in general, but I think are really wonderful at exploring how complicated and fun our brains are in a non-pathological way.
if you read any of the below, or are interested to hear more, please don’t hesitate to get in touch ellie@stillill.uk
The Nocturnal Brain by Guy Leschziner
https://blackwells.co.uk/bookshop/product/The-Nocturnal-Brain-by-Guy-Leschziner-author/9781471176357
Hallucinations by Oliver Sacks
https://www.waterstones.com/book/hallucinations/oliver-sacks/9781447208266
The Man Who Mistook his Wife for a Hat by Oliver Sacks
https://www.waterstones.com/book/the-man-who-mistook-his-wife-for-a-hat/oliver-sacks/9780330523622