How much does narcolepsy shape my identity? There is something that I hear a lot when interacting with other people with narcolepsy, or in fact any chronic illness: “it doesn’t define me”. While I agree on a basic level that a person can never be defined by their medical condition alone, I personally find it…
A few years ago when I was working as a freelancer, I was lucky to be involved in a project that ran free photography workshops for people with spinal cord injuries. It was a really great project and I was happy to be working within the areas of arts, disability and mental health – all…
A few months ago, I finally started taking Xyrem (sodium oxybate) to treat my type 1 narcolepsy. It was a long and emotionally draining road to even gain access to it in the first place, but now I’ve finally had the chance to try this medication I have heard so much about for so long.…
The “curse” of social media on society (particularly vulnerable millennials) has been a narrative that has been discussed endlessly over the past decade – but what if instead of letting it make us feel inadequate and alone, we used it as a tool for building a positive self-image and raising awareness of chronic/invisible illness? Activist…
In my last post I discussed a difficulty that many people with narcolepsy face, being unable to relax without falling asleep. Time spent relaxing while staying awake is really important in order to prevent burn out, and finding ways to do that can help us minimize feelings of anxiety and depression. While some people’s idea…
The eternal paradox of being able to sleep at any moment… without ever truly relaxing. This is the reality of living with anxiety and narcolepsy. As a person with narcolepsy, you have probably had people tell you that they are jealous of the fact you get to take naps all the time. Whether a joke…
So I’ve already put this up on the Advocacy Tools page and on the Facebook page, but I just wanted to talk a little bit more about the Narcolepsy in the Workplace info sheet I’ve created and the reasoning behind it. The idea for this document came from a commenter on this blog, Lisa, who…
Falling asleep quickly may be the one race that people with narcolepsy could all excel in, but sometimes when napping it can be difficult to switch off your brain — especially when there may be all sorts of lights, sounds and movement going on around you. Here I’ll detail a couple of methods that I…
As part of the annual narcolepsy conference in the US, N-Art holds an exhibition of works by narcoleptic artists. Last year I submitted a portrait of narcoleptic hero Julie Flygare, but this year I wanted to explore a subject much more personal to me: narcolepsy and mental health. In this post I’m going to talk…
When you have narcolepsy, naps are likely to be a part of your life whether you like it or not. However, when we take our naps on our own terms, they can be used as a great tool for managing our condition. Narcolepsy is a condition that causes our brains to work differently to those…