I really haven’t found any particular resources. I belong to NORD, and I get information through them and just talk to other people about narcolepsy over the internet via Facebook. So those have been the major things I’ve used.

I would say the most useful resources to me have been narcolepsy network and a group on Facebook, like a support group on Facebook that I’m part of for people with narcolepsy. I think that excuse me, that is really helpful to have a place where I can talk to other people who struggle with this, other people who know what it’s like, who know and experience the exact same frustrations that I have because any chronic debilitating condition is somewhat isolating. And the isolation that comes along with it, most people in your life aren’t able to understand what it is you’re experiencing and going through. They’re only able to feel how it impacts them, which is a normal, natural thing. But being able to talk to someone who actually feels what you feel, who gets what it is you’re experiencing because they experienced that too. That’s pretty big. So I would say that’s one of the best resources, just being able to connect to other people who have the same experiences.

My biggest resource has been my friends and my family as they’ve helped me navigate through this illness. I also use a support group on Facebook, which I found has been super supportive and helpful. It just helps me to know that I’m not alone in the symptoms that I have and that people share them with me, and we can share our experiences and help each other out.

A couple of things I used to use when I was first diagnosed I would try to find self-help books on narcolepsy, but back in 1997 there really wasn’t any and so I just had to rely on what my doctor had told me at the time. Of course, my dad had it, so I just had that reference of how he was when I was growing up and he wasn’t controlled for the longest time until he was in his late 40s, so I didn’t have a lot of resources. But now one of the best ones is the Narcolepsy Network website. They have patient stories and things like that that you can read. They’re accurate and everything. They specialize in just narcolepsy, so I like that organization. I also like the Facebook support groups for narcolepsy. That kind of gives you a feeling of connectedness with other people with the same condition that you have and that kind of makes you feel validated that other people have the same experiences that you have. It’s always good to have somewhere that you can express your frustrations and different things like that with other people that they won’t judge you. That’s a couple things. Also, I like Julie Flygare’s Project Sleep website. That is another mention on this. It is a very good resource. She was diagnosed with narcolepsy too, so she is awesome with that kind of thing.

Online support groups just so you know you’re not alone and you can discuss your experiences with other people so you feel less isolated, less crazy, and know that your symptoms aren’t off the wall anytime you experience them and you don’t call your doctor and feel crazy every time something happens because it’s normal and other people are having it too. Also, just online medical journals.

There are none, resources for, that can help with narcolepsy.

There’s a really great, big group on Facebook for narcoleptics, and I’ve gotten a lot of really good feedback and suggestions from that group. And everybody’s really supportive of one another and shares ideas or medications that have worked or haven’t worked, and side effects of those medications. So that, to be honest, has been the biggest resource I’ve used. Shortly after my diagnosis is when I found that group and was so relieved to have found them. When it comes to local resources, even though I live in a fairly big city, there just really aren’t any local resources. But I don’t know that I necessarily need them at this point. The social media support groups from… They’re all over, obviously, for multiple diagnoses, but the one for narcolepsy has been incredibly helpful.

My main resources, one is my doctor. She is very prompt at responding to any questions that I may have via a patient portal. I have quite a few groups on Facebook that I’m a part of, and especially PWN4PWN. We do web meetings so other people with narcolepsy can see face to face other people with narcolepsy. We talk about challenges and things that we’ve tried and things that have worked for us, as well as I’ve created some of my own bedtime routines and tried many, many, many different types of holistic, alternative medication and different things to try and keep my energy level and my adrenal high.

The biggest support that I think I have found online has been the narcolepsy support group on Facebook because people get to share their experiences, talk about side effects of medication, different diets that they have tried, exercises, that sort of thing. I think that has been more beneficial to me because I’m able to relate, I’m able to share what has helped me and not, and then people can benefit from that or maybe bring it up to their doctor’s attention. I also feel like the people in that group do a lot of research and they post things that are coming on the market, like new medications or anything like that.

I received a narcolepsy journal through Harmony Bio… I forget the company, off the top of my head. But that was very helpful in tracking my symptoms and showing it to my doctor, and also it gives me a chance to color and doodle because it just allows for that, in the journaling, which definitely helps with mindfulness. And there’s really good tips at how to manage cataplexy and just reminders that mindfulness really helps. So I’m definitely appreciative to have been sent that.

Actually, the biggest resource I have found is a Facebook support group, Women with Narcolepsy, because I can post how I feel. They understand. I can respond on other people’s posts and they can… I reaffirm them, how I feel, and they get support. The other one is my Fitbit to be able to track my sleep and see how much sleep I’m getting my REM cycles. So I can understand why I’m so tired some days, see how it’s affecting, my sleep, is affecting my mood and my tiredness.

I found some interesting articles on the New England Journal of Medicine. I’ve seen some things on WebMD. I do not bring phone into the bedroom with me, so I don’t have to worry about blue lights. I’m really watchful about my sleep now. I always was before; but if I take a nap, it’s a 20-minute nap in the afternoon. I think that refreshes me. I’ve really been mindful about my sleep health also. I have a new doctor, and he’s revolutionary in my life. So just a lot of little mindful tasks. If I take a nap, it’s 20 minutes. It’s like charging your iPhone. You just need that little extra zap of energy, and I’ve gotten that. Also, the medication has really changed my life for the better.

I use my phone alarm a lot to make sure that I get up on time, and I also use… well, I’ve also found different websites helpful with information, especially sharing information with others. I like Narcolepsy: Not Alone.

The most thing that I’ve found that is most helpful is basically the internet and connecting narcolepsy with other conditions. Knowing that a lot of times if you have narcolepsy, then you might have other autoimmune disorders or things that are going on, which in my case is the problem. So just finding that connection between other things.

The Job Accommodations Network plays a huge role in my own personal advocacy and how I can best help guide others in their own self-advocacy. The fact that I’m working on a management degree taking human resource classes that have allowed me to write, research, and do papers for workplace advocacy for those individuals with invisible disabilities, such as narcolepsy, and working and being successful in the medical profession with such disabilities, reading up and becoming familiar with the Americans With Disability Act and Amendments Act, and helping employers realize that they should see individuals that are still wanting to work as assets and not liabilities, and how to best use those individuals to the best of their ability, and how to best promote and advance any services offered by those employers for their clients and their employees.

So I find two big resources that are most helpful. One is online support groups because there’s access to so many people with so many experiences that you can find somebody who can answer a question about anything, any symptom, or medication or side effect. Because narcolepsy is so rare, I’ve never in my life met somebody else with it and I probably never will, unless it’s a prearranged meeting with somebody that I meet online. So having the online narcolepsy community is a major resource and the other is my doctor because he’s extremely knowledgeable and takes the time to stay up on the latest research of all the studies, and research, and medications, and anything having to do with narcolepsy. He is very, very knowledgeable and I know that he always takes the time to get all the latest information available to help me as much as possible.