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I appreciate and share your enthusiasm for outreach and awareness! PM me if you want to talk more about this, I too have been trying to do more outreach with the community offline.

There are a few organizations for Narcolepsy awareness that I'm sure would appreciate the volunteers. A lot of organizations are funded by pharmaceutical companies though, if that turns you off, I really suggest doing some digging on these orgs. For example, the MoreThanTired campaign recently caught my eye, and then I realized it was funded by Jazz Pharma lol. Next!

Project Sleep is run by a Type 1 Narcoleptic who has done a lot out outreach. I suggest you look into what they have available.

Other than that, try looking on Meetup.com for a narcolepsy support group in your area. There is usually at least one in every major city, maybe you can attend and organize some sort of local outreach with the help of fellow narcoleptics in your area!

Instagram is a great way to spread awareness. There are a few Narcoleptic Instagrammers I follow and I myself try to post semi-frequently about my N in order to raise what awareness I can. Consider using social media to post memes, awareness, etc.

You can also channel your personal passions into advocacy. Like exercising? Run a 5k for Narcolepsy research and ask your loved ones to sponsor you! Tech/graphic design? Make cool gifs and graphs about Narcolepsy, post them everywhere! Art? Draw your experiences with N, get creative and submit to competitions and galleries. Writer? Write a book! There aren't enough books about Narcolepsy. We need way more things like this.

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Use this amazon smile link to donate to Narcolepsy Network with every purchase!

https://project-sleep.com/

https://narcolepsynetwork.org/narcolepsy-awareness-day/

This is the light box I use. The legs are annoying but it's so cheap so I bought 4. If you buy a light therapy box, definitely go with a trusted brand like the ones you find at your sleep center. I'm very happy with carex as a company. I had an issue with one of the lamps and they promptly sent me a replacement, despite it being past the warranty. They even followed up with me to make sure I got it.

I have it set up on a Wemo plug, but any smart plug will do. I would wait until black friday, all of my smart plugs were free-$5 on Amazon during a promotion, and I bet Amazon will have something for black friday.

This is one of the bulbs that is tunable. I have a few around the house now, I can't remember which is which, and I'm currently out of town. Bulbs also go on sale during black friday and prime day and all that jazz.

Good luck and happy sleeping!

-Sleep Hygiene -> bed/pillow/sheet/blanket comfort, room temperature, sounds/quiet, routine sleep schedule, etc...

-Allergies -> get them in check as best you can, a lot of things I had going on were additional matters to the N w/ C and by eliminating as well as just learning to live better according to, or by, reducing impact of allergens in the environment/s I'm in, as best possible. A few examples unrelated to food, I will bath and change clothes after being in the woods or a field for long (to get allergens off), I keep the cats out of my bedroom now, I clean my floor and household as best I can (a bit more than I had prior).

It turned out that I have a lot of them, 25 of the 28 done on the standard prik test. This I discovered in the same year that I discovered finally what N w/ C was (even though I'd been aware of something for most of my life, collapsing since around 20 from C).

Onto food allergies, discovering I have a wheat, rye, barley and so many other allergies, I decided to go Gluten Free and it has made a impact on many symptoms like skin breakouts, stomach clogging (not constipation but very few BM's), mood swings, and I'd say I've got less 'lethargy/laziness' which is different than tiredness, or sleepiness. Beyond that, I realized something in milk and cheese was causing me, not stomach gas but breathing constraint from what I assume was GERD or an allergy to caseins; so I also ended up Dairy Free. I cut out meat besides occasional fish and I stopped eating sugars besides in raw forms like fruit, honey or syrup.
The benefits have been profound, it took me a couple of years to really get comfortable with it, but not over 5 years later I'm still very glad I made the changes.
Cooking my own food is a big part of managing the diet.
I still very much deal day to day, as the N w/ C is very present if I'm not in a good balance.

-Read/Learn/Reflect/Grasp/Respect -> dive into understanding what the disease really is, what it is to you and what it is to others, you'll learn what it is thought to be by not just others, but also your doctor. There's tons of info, videos, forums out there to learn from. Dive into each symptom, analyze them from your own experiences, piece the dots together to connect your own perspective of what your Narcolepsy (with or without Cataplexy) is and how it effects you (going deep). Doing this can not only help one accept the entirety of it but also very much help them to decipher and/or juggle better, all of it.

-Pace/Ambitions/Life -> we all have a different path and as similar as some may seem, no two are or can be the same. Basically, I think it is important to not overdo myself, as it in the past has been so easy to do that and have to suffer consequences of that, for too long. With this disease, it's a toll of sleep deprivation and loss, that builds and builds, there is no cure. I'm not gonna say we all in our society are running a never ending rat race, but I sure realized that I don't have what that takes and many people, seem to have that ability.

Taking a step back and reflecting with hindsight is huge. Perhaps living life in a different sort of way, be that slight or be that dramatic, change can be hard but it can sure be beneficial. The thing that is key is balance. N w/ C involves a lot of imbalances, you know the regulation in our brains of so much critical and mostly autonomous stuff is broken, so it takes strength, awareness with attentiveness to even begin to find a balance that works.


https://www.amazon.com/dp/0989991911

To be honest, I've never really participated in a traditional hiring process, so I don't know. I'm confident enough in my general competence that applying for jobs in the future doesn't really scare me. It seems your career philosophy is fairly traditional, which isn't a bad thing, but I do think "committing" less to one specific track can save you a lot of stress.

I would check out So Good They Can't Ignore You, by Cal Newport. If you can learn to work around your ailments and hone a special skillset, I believe you'll be respected and desirable as an employee! I don't know about outdoorsy stuff, but I am confident you can pave a way for yourself to do something at least park ranger-esque. Though you'll need to play the long game. Keep learning after college and consider everything research for eventual perfect job- one that caters to your interests + skills while accommodating your illness.

I know it sounds out there, but this sort of strategy could really be the way of the future. It's a risk worth taking, given that a traditional path (e.g. climbing a corporate ladder) is excessively difficult for PWN.

I used a Phillips Wake-up Light throughout college and it made a significant difference in how I was able to wake up for morning classes. The light has 20 settings from dark red to bright white-yellow, to mimic sunlight, and it starts lighting up about 30 minutes before your actual scheduled alarm, so that you’re inclined to naturally wake up easier. For example, if my alarm was set to 7AM and it was dark outside because it was winter, sometimes I found myself waking up naturally around 6:45AM (feeling rested and actually not irritated to boot, since I wasn’t forcibly jolted awake by the sound of my alarm). It comes with multiple sound effects you can choose from as well; I picked chirping birds to help with the “natural wake-up call” aspect.

The clock also has a nice “tone down” feature that helped me with sleep hygiene a lot. I’d set it to 15 min. when I got into bed, and the light would gradually darken and fade over that period of time. After 15 min., my room would be dark and I’d put away my phone or book (no more procrastinating sleep) and close my eyes.

In all, I love my light clock and I’ve recommended it to many friends, especially those that have a tough time with early morning shifts. Let me know if you have other questions!

I wasn’t sure if this would work for me so I bought a cheaper one first off of Amazon

Philips Wake-Up Light Alarm Clock with Sunrise Simulation, White (HF3500/60) https://www.amazon.com.au/dp/B00F0W1RIW/ref=cm_sw_r_cp_api_i_8F7PDbP3DEY00

I got it when it was about Au$65 and yes it definitively helps but isn’t perfect. I am planning on upgrading to a more expensive one but am glad I got a cheaper one first so that I don’t feel guilty dropping a couple hundred on a better one, my husband is planning on putting the cheaper one on his side of the bed when we get a better/brighter one.

I use this Phillips Wake-Up Light to help me get up and it's been great. The light starts gradually turning on half an hour before the alarm goes off at which point it is on full brightness. It is supposed to simulate waking up with the sun, and I think my mind does register it and begin waking up even if I'm not consciously aware of it. However, I have to remind myself to sleep facing the light for the last few hours before waking up (I'm often partially conscious throughout the night so I am able to remind myself, it's disruptive but helpful in this situation). Here's the link to the one I have, although there are other more sophisticated ones.


Philips HF3500/60 Wake-Up Light https://www.amazon.ca/dp/B00F0W1RIW/ref=cm_sw_r_oth_api_xwiPyb4D4A733

Oops sorry for the late reply. I went in on it and bought the more expensive, but not the most expensive model.
https://www.amazon.com/dp/B0093162RM/ref=cm_sw_r_cp_apa_7QvOBbZDSNWFZ)]

It was about $100 when I bought it, seems to be so now as well. I think the main difference in the prices is how bright they get

I swear by this sun lamp! I use it mostly for the winter blues, but I bet it would help with energy levels too. https://www.amazon.com/NatureBright-SunTouch-Light-Therapy-package/dp/B000W8Y7FY

>I have used a sun rise alarm clock for years. I used to work shift and it was absolutely essential to be able to wake up at night and get going. I have continued to use it even after coming off shift because it just works better for me. There is a noticeable difference in how I feel when I wake up if I forget to set it the night before and I get up to my SO's alarm.
>
>I have an older Phillips model and did a lot of research before I bought one, it was expensive. I have mine set to start lighting up 15 minutes before I need to wake up, I think you can set it to start as far out as 60 minutes early. You can also change how bright it gets. Once it is my wake up time it plays forest sounds and crescendos them in so it is not a jolt but to be honest I am almost always mostly awake by the time the sounds start. You can of course choose not to have sound or turn on the radio if you prefer,
>
>This is the one I have but there are newer ones on the market now.

https://www.amazon.com/Philips-Simulation-Headspace-Subscription-HF3520/dp/B0093162RM/ref=sr_1_3_a_it?ie=UTF8&qid=1541909332&sr=8-3&keywords=phillips+sunrise+alarm+clock

Check out Howard Leigh ear plugs. Super comfortable and squishy, blocks out most sounds (including snoring partners). Couldn’t sleep at home or travel without them. I usually get a week or so out of each pair.

The Philips Wake Up light with dawn simulator alarm clock is nice. The light doesn't really wake me up but my husband loves it. It might work for you.

There's many models but here are some links:
https://www.amazon.com/Philips-Wake-Up-Sunrise-Simulation-HF3505/dp/B00E91EGDS

https://www.amazon.com/Philips-Morning-Wake-Up-Simulation-HF3520/dp/B0093162RM

• Vitamin D when I wake up.
  
  These 2 or 3 supplements right before going to sleep lets me sleep the whole night.
  
  
• Taurine (1-2g) to sleep deeper amazon
  
• L-Theanine to counteract caffeine amazon
  
• Magnesium Glycinate (200g) amazon
  
  If I had to choose just one, I'd start with the Taurine, then Magnesium (Mg).
  
  I've noticed the MG gives me vivid dreams. The Taurine & Theanine links are to bulk powders as they offer the cheapest long-term solution. You can purchase pills but they would run $10-30/month per supplement, vs the powders costing a couple of cents per day.
  
  There's some others here, but I haven't tried them: http://main.poliquingroup.com/ArticlesMultimedia/Articles/PrinterFriendly.aspx?ID=1041&lang=EN

Thanks - I've been thinking of just doing the first dose and not the second as well.
I'm starting to think that my sleep isn't as disrupted as others with narcolepsy so maybe the Xyrem load is counteracting to some degree.
It's really hard to find any non-biased literature on this stuff other than this book: https://www.amazon.com/GHB-Natural-Enhancer-Ward-Dean/dp/0962741868/

So I generally think self-help books are nonsense, but [this book] (https://www.amazon.com/Happier-Learn-Secrets-Lasting-Fulfillment/dp/0071492399) changed my life and views towards my illnesses (N w/ C and Ehlers-Danlos Syndrome). It examines the pursuit of happiness in the face of the realities of life and our propensity as humans to rarely be satisfied with our lives. The author used to teach a course (based on the book) at Harvard that was the most popular course at the university.

Orange tinted glasses make a huge difference for me. I put them on around 7 or 8 and go to bed at midnight.

I use these after someone else here linked them: http://www.amazon.com/Uvex-S1933X-Eyewear-SCT-Orange-Anti-Fog/dp/B000USRG90

https://www.amazon.com/gp/aw/d/B004JF3G08/ref=sr_ph_1_a_it?ie=UTF8&qid=1473684011&sr=sr-1&keywords=sphere+gadget+technologies

This one! A little pricey but it worked for me.

Try a sunrise alarm clock. Amazon sells them from 60.00- overa hundred:

http://www.amazon.com/BioBrite-Pearl-SunRise-Alarm-Sounds/dp/B00656Z4IG

Up until earlier this year, I had been taking 3mg of meletonin for about 6months and it didn't really seem to be doing much. My sleep specialist then told me to drop down to 300mcg (0.3mg) as new research has shown that less can be more. I did a bit more research and it seemed to back her up, though I didn't look into it too much.

Supposedly, 0.3mg is the amount that the body naturally produces to signal sleep. That does was restricted to a specific prescription brand due to patenting, and people tend to believe that "more is better" with supplements, thus the really high doses you can get. After switching to the lower dose, my mood improved a bit during the day and it feels as if my sleep is a bit more regulated (I also have non-24, so nothing really helps everything). Doses greater than 1mg are reported to increase daytime drowsiness and depression, though they will often knock some people right out.

Do your research, and it's a supplement so regulation isn't the greatest. I take this

This thing?

Shock Clock 2 - Silent Smart Alarm Clock - Motion Tracking - Never Sleep in Or Hit Snooze Again https://www.amazon.com/dp/B07P83FTR5/ref=cm_sw_r_cp_apa_i_unzgDb58KAAW2

http://www.amazon.com/gp/aw/d/B000GU4G0Y/ref=mp_s_a_1_sc_1?qid=1406815754&sr=8-1-spell&pi=AC_SX110_SY165_QL70

Those are the ones I get, and you're right, they are about $2 per patch. :/ it was only $20 per box when I started using them. Unfortunately you won't find them much cheaper.

[edit] Actually I just checked, and it's cheaper to get a box with a quantity of 7, that makes them $1.60 per patch. Just grab two boxes of that and it's a few bucks cheaper.

You could also go for Equate brand, but I hated those. They're tiny, transparent squares that have gooey glue, and they itch a lot. Habitrol is more of a sticker type adhesive, and they itch considerably less. They're circular and about an inch in diameter.

If you ever run out and need some in a pinch, the Rite Aid brand actually uses that brand, just in a Rite Aid box. But those are some ridiculous $40 per box so that would be for emergencies only where you couldn't wait for shipping.