JULY 4, 2011. That was six years ago and was the date I set out to prove a point. I was going to prove that diet could in no way help my narcolepsy. I was angry that anyone could even suggest it. I looked back on what narcolepsy had done to not only my life but to my mom’s and it made me hurt with the loss. And when I thought of what it was likely to do to my son it quite literally took my breath away. Even with medications narcolepsy was still a filthy, stinking, thieving BEAST and there was no way a measly diet was going to do anything to change that.
Hm… looks like I was wrong. Who’d a thunk it? There were a couple more things I wouldn’t have thunk:
- One diet does not fit all
- No one has the exact same result
- What once fit could all of a sudden not fit anymore
One diet does not fit all: Though it is still my strong belief that some form of carbohydrate management is necessary and that food intolerances need to be identified, I now realize that the route taken to mitigate symptoms is going to be somewhat different for everyone. There are so many variables to take into account. Things like current medication regimen and its efficacy, other illnesses, current overall functionality, extent and severity of food intolerances, age, lifestyle, etc. etc. etc. My mom, son, and I follow the same basics but the specifics of each of our diets is different.
For example, even though all three of us eat a gluten-free diet we each react to gluten in different ways that in turn dictate how we approach being gluten-free:
- It takes several “gluten-ings” back to back before it affects me to the point of being sleepy and brain fogged… most usually I just get joint pain from it.
- My mom gets mouth sores and has brain fog for days.
- My son is the most sensitive in that he has a sleep attack within 30 minutes of ingesting it.
Because of our varying reactions, we had to adapt our diet to fit. I don’t have to be as strict when eating out or when buying packaged products. My mom and son have to be very cautious on both fronts and that makes their diet more restricted than mine is.
No one has the exact same result: Even though the basics of our diet are the same, my family and I have had different results.
- My son is more mentally sharp than mom and I could ever hope to be.
- Mom has more physical energy than I do.
- I can wake up more easily than they can.
What once fit could all of a sudden not fit anymore: There are many things that affect our diet. Both in the amount of carbs we can tolerate and in the efficacy of the diet in general.
- Physical activity/exercise effects how many carbs we can eat.
- High stress levels can undo what the diet typically handles for us.
- My monthly cycle and mom’s changing hormones from menopause affect how many carbs we can eat.
How in the world did we figure all this out? We failed and then found a way to fix it. We weren’t afraid to change, adapt, and redirect. And we persevered NO MATTER WHAT. But the biggest thing we did was stand strong in the knowledge that be it good, bad, or ugly… our narcolepsy was affected by what we ate.
Today has been an emotional day for me. I’ve spent the bulk of it remembering where I was six years ago and comparing it to where I am now. I’ve reflected on all the things that have happened and how they’ve led me to THIS MOMENT IN TIME.
At this moment in time:
- I’m celebrating 6 years of Madcap LIVING.
- I’m using 72 months of successes and failures to write, edit, and finalize posts and training plans that will help teach you the basics of our diet.
- I’m channeling 313 weeks of experience to create a plan that gives you the tools to not only make some basic dietary changes but also show you how to adapt those basics to fit your particular needs.
- I’m boiling down all the ups and downs of the last 2,192 days into something that for you can be more up than it is down.
- I’m thankful to have had 52,608 hours of doing a diet that I never, ever thought would do a single thing to tame that filthy, stinking, thieving narcolepsy BEAST.
- I’m overjoyed to have had 3,156,480 minutes to guide my family and other PWN toward a path of greater wakefulness.
Here’s to many more years, months, weeks, days, hours, and minutes of LIVING.
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.