You know, there’s a reason I call this site The Madcap MissAdventures of a Narcoleptic. It’s because my life is a nonstop adventure since I keep running into grand and freakishly appropriate ironies. Ironies that I just cannot help but laugh at. You know, the deep in the gut, slap yo momma, bring you to your knees kind of laughter?
I had just arrived at the hotel in Minneapolis for the 2015 Narcolepsy Network Conference. This year, rather than being an attendee, I was instead there as a vendor representing this new website. A website that is aimed at spreading the word about how my narcoleptic family and I use a carbohydrate management and gluten free diet to mitigate our narcolepsy symptoms. The bellman and I were in my hotel room and had just unloaded all of my luggage when I turned to hand him his tip. At that very moment I looked up and what did I see? I saw the room’s artwork. Artwork so contrary to my website’s message that it made me laugh so hard it brought tears to my eyes and I could barely get the bellman his tip let alone stay standing. I later told my friends that I laughed so hard that a tear ran down my leg. Yeah.
Okay, so the artwork was funny. What gives? I said that the website was about being gluten free right? As in wheat free… bread free… FLOUR free. With that little tidbit of information, take a peep at what sent me into hysterics:
“Gold Medal Flour. . .Why Not Now?” Oh, sweet heavenly mercies! Flour? Flour?!?! There’s artwork about flour in my hotel room! My room? The Madcap Miss, who hasn’t had flour in four years? So yeah, I kinda lost it and giggled myself to bits for the rest of the night.
Later that night something unexpected happened. It was Friday evening and I was mentally preparing for the next day when I would debut my website to all the Narcolepsy Network Conference attendees, speakers, volunteers, and other vendors. I was nervous, who wouldn’t be? But see, I’ve tried launching this website for four years. FOUR years. And each time there were very good reasons why it wasn’t the right time.
One big reason was that I was cocky, overly zealous, and too proud of myself and my success when I was trying to spread the word to other people with narcolepsy. I preached that the diet had to be done perfectly and that if someone had tried it and it hadn’t worked it was because they hadn’t done it right. I said I was proud, right? Ever hear “Pride cometh before the fall?” Well, I fell. Flat on my face. Busted nose, scraped knees, and bruised ego. This happened not too long after I’d been so holier than thou when attempting to spread the word about this diet. I found out the hard way that “perfection” in the diet was not possible and shouldn’t be expected. I needed to get off of my high horse and get real. So I did. I got humble and stopped preaching about it like I was a perfect angel.
Okay, so I got my pride in order and was ready to try launching the website again. But then the science-y stuff was only kinda there but not totally there. Some of what I was doing was based on something that I’d read somewhere and thought maybe it could be applied to a narcoleptic. I used myself as a guinea pig to test out the diet… some things worked and some didn’t. Well, I couldn’t expect people to try this willy nilly, guinea pig style approach. And then some things began to shift. Gluten free, good fats, carb control, gut health = mental health… all these things began to pop up in the research and then into mainstream media and publications. Pioneers like Dr. Terry Wahls were talking about neurologic illnesses being halted and at times reversed based on a diet similar to the diet my family and I follow. Others like Dr. David Perlmutter and Dr. William Davis began talking about gluten, carbs, brain health, and gut health. The microbiome was now the hottest topic in medical research. This was fantastic! Pride under control? Check! Research to back up my claims? Check!
You’d think I’d launch at that point, right? Um. No. THEN I had to deal with the question “Why me?” Why should I be the one that spreads the gospel according to Diet for Narcolepsy? Each time I tried to write a post I was assailed with doubts and questioned my abilities. I doubted my intelligence, had a low view of my personality and capabilities, and thought I was too lazy and unmotivated to run this website. I thought it would be too hard to do and still be a wife, a mom, a friend, a full time employee. It would be too hard to get this message out, too crazy to even attempt. Each and every one of these thoughts were from my view of myself before narcolepsy diagnosis and before I got my symptoms under control with this diet. Each and every one of them were misperceptions of who I truly am and what I’m capable of. They were views of myself through the narcolepsy lens. Well I’m NOT that person. I’ve spent the years since my diagnosis finding my true self. And the years since changing my diet and seeing such a positive turnaround in my symptoms proving to myself that I am NOT stupid, I am NOT lazy and unmotivated. I CAN do this.
So that night, I thought to myself I. Can. Do. This. I can. I will. And then, my friends, while lying in my bed, looking up at that ridiculous piece of artwork, I read that line “Why Not Now?” Why not now? There was no reason there in my heart or mind for me to use as an excuse. No more lack of research. No more pride. No more misperceptions of myself.
Let’s take a look at your life. Are you thinking that you can’t do this diet? Are any of your reasons the same ones I had for not launching this website? Are you doubting your intelligence, have a low view of your capabilities, think you are too lazy and unmotivated to try the diet? That it will be too hard to do and still be a wife or husband, a mom or dad, a friend, a full time employee? That it’s just too crazy to even attempt? Well I’m here to ask you to toss those ideas in the trash and take a deep look inside to the real you… the non-narcoleptic you. Throw those misperceptions of the real you out the window and ask yourself “Why Not Now?”
Well…why not?
Your Madcap Miss (a.k.a. Gina Dennis)
Let me be totally up front here…I AM NOT A DOCTOR, nor am I a nutritionist, I only have a tiny amount of formal training in such things as a Health Coach. But I am a person with narcolepsy who uses dietary and lifestyle changes to mitigate my narcolepsy symptoms. I’ve been experimenting with these changes since July 2011 and have successfully maintained a high level of narcolepsy symptom management since that date. And so has my family with narcolepsy. This website contains our personal stories, failures, and experiments. In this website I will share with you the information that I have found most credible and some practical ideas for mitigating narcolepsy symptoms. I beg you to check with your doctor before initiating any of the dietary changes I speak of, especially if you are taking any medications.
I saw you at the Narco Conference this year. Your energy comes thru in your writing. Looking forward to learning more from your experience, especially when it comes to nutrition/diet strategies for narcolepsy. I was just diagnosed about six months ago. Sadly, my sleep doctor didn’t have any recommendations for me in this area. Ready to learn!
Hi Lynn! Glad we were able to meet at the conference and that I sparked your interest. 🙂
I’m sorry to hear of your recent diagnosis but am happy that you will join me on the website to learn more about how you can ease your symptoms. Buckle up!
this is perfect! Thank you for sharing your experiences – can’t wait to see what happens next!
Thanks Jenna! Glad to have you along for the ride 🙂