A recent Article was just published, reflecting on the lives of New Yorkers with Narcolepsy. I especially appreciated this article and this excerpt explains the consistent issue that I have with Daytime Sleepiness and not sleeping at night. I feel that this is the number one question that I get when discussing my symptoms with friends…
“Wait… you have a disorder that makes you sleepy, but you can’t sleep?”
To understand why narcoleptics are always so tired it helps to compare their sleep cycles to a person with regular sleep patterns.
A normal sleeper alternates between non-rapid eye movement (NREM) and rapid eye movement (REM) that together make up one full sleep cycle usually lasting 100 to 110 minutes. This cycle repeats until the person wakes up. When a person begins to fall asleep, she enters stage one of NREM sleep, a period of light sleep. A few minutes later she enters stage two and begins to disengage from her surroundings. During this stage, breathing and heart rate become regulated and body temperature drops. Stages three and four of NREM are the deepest and most restorative periods of sleep when muscles relax and hormones, such as growth hormone (crucial for development), are released. Each stage of NREM lasts between five and 15 minutes.
At anywhere between 80 to 100 minutes, a normal sleeper goes into REM sleep, when the eyes quickly move back and forth, dreams occur, and the body goes into sleep paralysis, meaning the muscles are completely relaxed and turned off. Paralysis occurs so the sleeper does not act out her dreams. In a person who experiences regular sleep patterns, the brain is in NREM sleep for 75 percent and REM sleep for 25 percent of the night.
Narcoleptics, on the other hand, normally enter REM sleep first and it takes them just a few minutes to do so. Then they quickly leave this stage. Their stage one sleep is longer than a normal sleeper’s, while stages three and four are much shorter. This is why they never receive the necessary amount of restorative sleep needed to feel well-rested. While a normal sleeper’s sleep cycle usually lasts a consecutive eight hours at night, a narcoleptic’s is sporadically spread out throughout all 24 hours of the day, and they fall in and out of fragmented sleep, which explains why narcoleptics commonly experience excessive daytime sleepiness.
However, at bedtime, they may struggle to fall and stay asleep, so many also suffer from insomnia or continuously wake up over the course of the night.
While common, these symptoms are not universal. Each case of narcolepsy is unique, which is why it can be difficult to diagnose and fully comprehend.
Sometimes, regardless of determination and medication, the disorder prevails. Jackie Horvath, 39, is currently confined to her apartment on Staten Island. She often feels disoriented. “I don’t know half the time if I’m sleeping or awake,” Horvath says.
You can read the memoirs and entire Article Here. I highly recommend it!
In 2012, I had to drastically change my diet and lifestyle on a whim. This was certainly somewhat of a struggle at first, as I had no idea where to start. While I had to stop eating gluten for medical reasons, you may be choosing to stop eating gluten for a multitude of different reasons. Whatever the cause may be, you are no longer ingesting gluten. I would like to mention that if you feel you may be suffering from a gluten-intolerance and have decided to go gluten-free for symptomatic reasons, possibly consider this first: you may be suffering form a nutrient imbalance. Bloating, fatigue, diarrhea, migraines, digestive problems, joint pain, and mouth sores can all be symptoms of a nutrient deficient diet as well as a gluten intolerance. Try to examine all possibilities if you are “self-diagnosing” a gluten intolerance.
Hopefully I can help you realize that this can be a relatively easy change to make. It is better to focus on what you CAN eat, rather than what you cannot eat. Also, don’t run out and try to buy gluten-free products to replace everything that you eat now. This may help with the initial transition, but will get expensive very quickly, and you will most likely feel frustrated.
Let’s go over a few things that will help you get started. I am going to very bluntly explain the advice that I wish I had been given from the start:
1. You are making this decision. I repeat, YOU are making this decision. If you want to do it, then you can! Food is for fuel. You can cheat when you are out with your friends or even at home alone with no one else around… either way, you might feel terribly the next few days while you “de-glutinize” again. Once YOU and you alone decide that you are wholeheartedly doing this, your daily life and well being will improve ten-fold. It becomes a way of life rather than a daily struggle and stress.
2. “De-Glutinizing:” This is what I call cleaning out your system. For me, it took about two weeks to feel completely better. I had about three or four days that I felt like I had some new strain of the flu… I was sick in the bathroom for an unfortunate amount of time throughout the two weeks. Moving on from feeling like death, the whole body feeling that you will experience afterwards is just fabulous.
3. First, you need to understand what Gluten is and what ingredients can contain it.
- Gluten – gluten is a protein found in wheat endosperm. This is what affects the “stickiness” or texture of dough or other bakes products.
- Gliadin and Glutenin are the two proteins that make up gluten.
- While “true” gluten is found in wheat, gluten is also in other cereal grains, such as rye, barley, and other crossbreeds of plants.
4. Like I mentioned previously, Focus on what you CAN eat, rather than what you cannot. This involves focusing on naturally gluten-free foods. There is no gluten in bacon, meats, vegetables, fruits, and nuts. Imagine ordering a 16 oz. prime rib at Texas Road house, maybe a soul-warming bowl of pho from a takeout restaurant, or even fresh homemade guacamole, hummus, or buffalo chicken dip. There is usually no gluten in ice cream or dark chocolate either.
5. Here are some food that you will ALWAYS need to check for Gluten.
- ALL Condiments and Dressings
- Soy Sauce
- Processed Meats (bacon, hot dogs, deli meats)
- Flavoring Packets (Lipton Soup)
- SOUPS (I have yet to find gluten free Campbells)
6. Go-To List of Safe Foods
- Fresh fruit
- Fresh vegetables
- Oils, shortenings, and mayonnaise
- Milk, half and half, whipped cream
- Cheeses, butter, margarine, sour cream, cream cheese
- Canned fruits and veggies, applesauce, cranberry sauce
- Canned beans and lentils
- Rice cakes, rice crackers
- Meats, poultry, eggs
- Quinoa, Rice, Chickpeas, Flax, Sunflower Seeds
6. Be aware that many cosmetic products may also contain gluten. If you have been diagnosed with Celiac Disease, this is a matter of concern for you. You can find more out about this from the Celiac Diva.
7. Keep in mind that anything that is fried in a fryer with other gluten-containing foods may cause a negative digestive reaction for you.
8. You will probably grieve your losses at some point.
9. And it is perfectly okay to throw a tantrum or two along your journey too.
10. PREPARATION is going to be the most important part of this. If you prepare to shop for your new lifestyle, and prepare snacks and food, you will make this a much easier time for yourself. I recommend looking up a restaurant’s menu before going out to make things easier for the server.
Most of the time they will look at you like you are speaking in an alien language.
You will eventually get to the point that you don’t even remember that you eat “differently” because it will become habit.
11. Cross-Contamination may happen despite your best efforts. You might get a migraine immediately after you eat the gluten containing food, or you may experience other detrimental symptoms shortly after eating.
Remember that cheating is not worth it. Learn from the mistake and move on to more gluten-free days!
12. I have many recipes throughout my blog that are all gluten free. I am going to be doing my best to post more that are quick and easy as well as more snacking ideas. One of my favorite brands for gluten-free flour mixes and baking mixes is Bob’s Red Mill. I highly recommend all of the flours and the decadent brownie mix. I used the white rice flour to make this gluten-free pie crust for Christmas! Another good and reputable brand to use is Jules. I have used both brown and white rice flours as well as the all purpose flour.
If you would like to learn more about eating, shopping, and living gluten-free, take a look at this PDF. This is a handout published by the Children’s Digestive Health and Nutrition Foundation. It is one of the easiest to read guides that I have come across.
Disclaimer: This article is based on my opinions and personal knowledge of science and nutrition.
I have a goal to attend the National Narcolepsy Conference this year in Denver, CO. Attending this conference will help me to both learn more about Narcolepsy as well as learn to better live my daily life with my chronic neurological auto-immune disorder. This page is to help me raise the funds to achieve my dream of attending this potentially life-changing experience.
I’m keeping this post short and sweet. More recipes to come soon!
After reading a blog by a lovely someone I met through blogging, I was inspired to make this post. I normally don’t openly discuss this but I have been writing a lot lately, and I wanted to publish this publicly. I deal with it daily, and it won’t ever go away. Here is my letter to you:
My name is Amanda, you may or may not remember me – we first met a long time ago.
Well, I remember you quite well, and there are a few things I need to say. First, I want to begin by saying that I don’t hate you, but there are some things we need to discuss and work on.
I had to quit playing soccer because of you. I just didn’t have the energy to stay awake for any of it anymore.
You racked up my medical bills. I was constantly falling down the steps in a sleep-walking stupor, or injuring from being tired while trying to complete a task. You made me extremely clumsy.
I have to take medication daily. Maybe one day I can stop taking this medication. For now I cannot, and I will deal with it as I need to. I realize this medication does not change who I am as an individual, it keeps me awake in order to share this individual with the rest of the world.
Sometimes, you make me question my sanity. For example, you make me have hypnagogic hallucinations, waking nightmares, and lucid dreams on the regular. I know I’m dreaming…. but am I? Of course I am….
You made me fat. I weighed every ounce of food that entered my body and my roomates thought I was insane I’m sure. I ate less and less and gained more and more. This made people think I was even more lazy than I really was. It took so much effort just to not gain three pounds in one day from who knows what. I spent a long, long time beating myself up over my weight and felt I would be so much happier if I could just solve this mystery. I now know that Narcolepsy was the major factor in doing this to me. I am much, much happier now.
I almost failed out of school. That’s right. Failing grades. Sleeping in class. Not showing up for exams. Repeated College Classes. MONEY down the drain. Teachers in high school and Professors in undergrad constantly questioned my going to grad school.
You turned me into a zombie.
I can’t have any caffeine anymore. Because of you and the medication I now have to take, I cannot indulge in the sweet taste of dark, black-roast coffee. I can still have decaff, but it just isn’t the same. This also means checking countless food labels for caffeine.
I’m required to self-identify. Narcolepsy is covered under ADA, The Americans with Disabilities Act. If something were to ever happen at work, which nothing ever has, I need to have this “flag” on me to avoid any otherwise imminent lawsuits.
You made me look drunk. When the tired hits, I sometimes couldn’t even hold things in my hands due to the lapse in neurological control. When I get too tired I act weird, slur my speech and get loopy, seemingly delerious at times. Some have commented that I made a convincing public drunk.
Sometimes I can’t drive. I can’t drive at night because of you. This is extremely inconvenient for me.
You make me a mean monster. Thanks to you, anyone can learn to hate me in the morning or as I’m falling asleep. I take a while to wake up, and sometimes I had a long night of work in my brain… It takes something special inside of someone to know that I don’t mean any of it.
I sometimes can’t finish watching movies. Oh, what happened during that movie? Really? Somehow I fell asleep during Michael Bay’s twenty successive explosions and don’t know what happened at the end at all.
You make me afraid to have children. Frightened that one day I won’t be able to hold down a job. Fearful that I won’t be able to finish school. Petrified that I won’t have a productive life.
You make me afraid.
All of these things aside, my dear friend narcolepsy, there are a few things that I am grateful to you for.
You have made me become a better person.
Because of you, I have been forced to change my diet and become the healthiest I have ever been.
Because of you, I became a competetive powerlifter.
I always have the best stories to tell. Unfortunately, Narcolespy was a constant object of humor in my life that delayed its diagnosis. I have come to accept these stories as absolutely hilarious, as does everyone else.
I have always granted every person I’ve met with a massive amount of compassion. But, because of you, I am reminded daily how important it is to treat people in a way that I would want to be treated, With understanding and compassion.. who knows how many people I meet have invisible illnesses?
Because of you I know the value of being awake. How precious are the simple things that are continuously being taken for granted by others.
Because of you, I constantly research and learn. I have always been a dreamer of sorts, but now I need to know even more and quench my desire to know everything I can about you.
Because of you, I’m the hardest f***ing worker anyone will ever meet.
You taught me to keep my head held high in the face of extreme physical limitation.
You taught me to have faith.
You taught me the value of executing a task while you can. Idleness is for pansies.
In short, F*** you, Narcolepsy.
But, at the same time, THANK YOU. Thank you for everything. Without your discovery, I wouldn’t smell, see, and breathe in the things around me in the same way. You gave me one hell of a challenge, and I’m not ever backing down.
(Special thanks goes to Christina for sparking this note)
I hope everyone had a great holiday! I love the family and fun that every holiday brings to my home, but at the same time, I know I am certainly enjoying the lull in events; it feels good to relax.
One thing I love doing over the holidays is baking! Of course my family has an annual Christmas morning tradition of an early morning breakfast before we open presents. We always enjoy what we call the “country breakfast pie.” This of course is traditionally made with a gluten filled crust. My goal for this holiday was to create a delicious, and non-crumbling gluten-free pie crust so that I could enjoy the amazing taste of Jimmy Dean sausage early on Christmas morning. Mmmm.
I decided to take (what I thought would be) the easiest route; I used Bob’s Red Mill Gluten Free Rice Flour, and the pie crust recipe that was so graciously printed on the back of the package.
Gluten-Free Rice Flour Pie Crust Recipe
- 1/4 cup Melted Butter
- 1 large Egg, slightly beaten
- 1 pinch Sea Salt
- 1 Tb Sugar
- 1/4 tsp Baking Powder
- 3/4 cup Bob’s Red Mill White Rice Flour
If you have an egg allergy, you can use the Bob’s Red Mill Eggless Adaptation Here!
Making the Crust
I am not always one to follow recipes or even use one in the first place. However, the directions state that it is especially important to follow these directions exactly.
This crust turned out so well! Everyone enjoyed it and didn’t even know that it was gluten-free!
“Energy is the power that drives every human being. It is not lost by exertion but maintained by it, for it is a faculty of the psyche.”
– Germaine Greer
New squat clean PR today at 140 lbs. I have been working for a while on this lift and had a goal to surpass my own body weight and have successfully done so as of today! (I currently weigh ~134) I love lifting for new 1 Rep Maxes because it is ultimately my own work, my own progress, and my own goal to achieve. Once you hit that PR, you feel INCREDIBLE and want to do even more. It certainly keeps me motivated!
How to Start Working Out at Home 101: You Don’t Need Anyone or Anything to Change Your Life, You Need YOU.
In January, I made a post to Facebook including this picture and caption:
I merely posted the picture to Facebook to serve as my version of “being accountable.” If others in public view and notice my progress, I also notice my progress, and if I go backwards, then other people are going to know! Of course, I took this in December, 2012, but I used it as a starting point for 2013. I was not expecting any response to my photo, as I posted for my own good. I got an overwhelming response to my photo!! Over 100 likes and 20+ comments!! Holy crap!! I was never so proud and feeling accomplished in my life!! People that I attended school with yet hadn’t talked to in a while even commented and liked my picture. That picture may seem petty or just another picture on Facebook but honestly, it was THE BIGGEST confidence boost and sense of “accomplishment” that I have experienced throughout my weight loss journey. I should also say that completing the Mud Ninja Obstacle race and my firts 5k, and my first 10k last year were all just as invigorating experiences. But when the average joe or some random person from your past goes out of their way to compliment you, that is huge! At least it is for me. These are the moments that you must appreciate when you decide to embark on a journey such as mine. You have to enjoy the wins as they come in any size or form.
So now, I am proposing that 2013 is the year of NO EXCUSES.
I said those exact words last year in January, 2012. I said to myself, this is the year , this is it. I will figure out why I can’t lose the weight. It turns out, I made good progress in the early months of the year, but quickly got discouraged and slacked a little bit. I found out later that I had a genetic disorder that was causing my issues in never being able to lose weight!!
- For one, I have hypothyroidism. I have known this since I was about 16, and I have been taking medication for it ever since.
- For two, I have always played sports and never been able to lose weight. ever.
I finally found out that I have Narcolepsy and a genetic gluten intolerance. HELLOOOOO. Everything that I have ever had issues with before have been traced back to these disorders!!
After I started to change my diet and follow a Narcoleptic-friendly diet, I felt about 2387548564564 times better!
I finally had the energy to complete a day and still want to exercise. I no longer felt that I was three days behind on sleep from the moment that I woke up in the morning.
I continued my weight loss efforts, and due to being strapped for cash, I worked out at home. I worked 2 jobs, and finding an affordable 24 hour gym that I could use around my schedule was just not working out. It also happened to be spring-Summer time and was always nice outside. I happen to be one that enjoys hotter weather, so exercising in 90 degree heat was okay for me. NORMAL PEOPLE DO NOT DO THAT. I will say it again, don’t be stupid about heat and working out, I happen to be very comfortable in the heat and I drink plenty of fluids, so it worked for me. I continued working out in my home and outside for a long time. Pretty much until I just joined a gym this past January. And I still workout at home too. Since I had so many people ask how I worked out at home recently, I’m going to tell you.
How To Work Out At Home 101
1. Getting Started and Stretching:
The first thing you must do if you are just starting out and working out at home, is include dynamic stretching into your warm-up. Stretching straight out with cold muscles is never a good idea, and can actually cause injury. Basically, dynamic stretching can be defined as “active” or “moving” stretching – meant to stretch to your body’s capabilities without exceeding your passive-stretching capabilities and injuring yourself.
This type of stretching is best for someone just starting out with exercising, or really, anyone. When I workout my legs I always start with leg swings in each direction, forward/backward and side to side, with each leg for 20 seconds each. This allows me to warm up my muscles without stretching them cold. Since you body may not be used to extra motion or exercise, this type of stretching is CRUCIAL for safety of yourself; Your body really won’t know what is going on at first and this will help you to gradually warm up safely.
2. Exercise #1: Crunches. A basic crunch can help to get your core warm and strengthen it. This is going to mainly work your rectus abdominus muscle.
To do this the easiest way, put both hands behind your head lie with your knees bent and you feet on the floor.Imagine there is tennis ball between your chin and neck and slowly bring yourself up. If you need a guide, maybe put a tennis ball sized object under your chin for one rep – this will give you the feel of how much space needs to be there for each repetition.
You will want to try to raise up 6 inches and repeat about 10-12 times. Make sure you breathe! You will want to breath out upon exertion of an exercise to help power through it. In this case, you will breathe OUT when sitting up, and IN whilst coming back down to the floor.
Want to make it easier? Just completely come into a full sit up, without holding the crunch mid air as you would in the exercise above.
Want to make it harder? Bring your hands to your chest, touching opposite shoulders.
3. Exercise #2: Half Burpees. The best thing to do when first starting out is just to get your body moving. Mike Rowe does Burpees to stay in shape and you can have a laugh at him doing so here! Burpees are a full body conditioning exercise and will help to strengthen the legs, the shoulders, the chest and the arms. Burpees may be a little bit ominous and challenging to those just starting out, which is why I bring you the “Half Burpee.”
For the Half Burpee, you will squat with your hands down by your sides as shown in the picture, then jump or step your feet out behind you to a push up position, then jump or step your feet back in to the squat position, and then stand back up. Repeat! Try to do as many as you can in 30 seconds!
Want to make it Easier? Come down to your knees if the stress and weight of the push-up position is too strenuous at this time. Simply use a yoga mat, pad, or towel to cushion your knees.
Want to make it harder? Jump out your feet each time and jump straight up out of your squat each time for the final movement.
Try to achieve 5 cycles of 30 seconds each. Burpees are a MAJOR calorie burner!! They will tire you out quickly, and you will know you just kicked those calories’ butts.
4. Exercise #3! Squat Jumps! To start this exercise, start in a squat position and place your hands to the floor for balance and stability. Jump straight up into the air! You can see an example HERE. The woman in this video does not place her hands to the floor for the extra stability. Do this to the best of your ability. Here is a picture to help to better visualize each stationary part of this exercise.
If you can’t jump all the way up, then just keep doing the squatting motion and in a few weeks, you’ll be jumping in no time. Do this exercise 20 times and then break for a minute. Repeat.
5. Exercise #4: Supermans! The starting position for this exercises is lying face down on the floor or mat.
You will need to straighten and extend your arms out in front of you on the floor. This is going to mainly work your lower back. The goal is to have all arms and legs off the floor for two seconds at a time. You want to squeeze and contract your muscles so that you look like superman when he is flying. If you can’t life all four limbs off the ground at once, then try three, or even one arm or leg until you can work up to all four. Repeat this ten times for two seconds each.
To make this more difficult, you can even make a swimming motion with your arms and legs while trying to hold for up to thirty seconds!
6. Exercise 5: Planks!! planks planks planks. These are one of my favorite exercises! And They SUCK. when I say that something sucks, it means it is FANTASTIC for your body. This exercise is challenging for any fitness level and comes with many modifications. Choose which feels most comfortable for you to comfortably hold. If you feel painful strain, do not try to go further, modify the current position that you are in.
First is the regular plank position with your belly down and your hands below you with your elbows bent. The idea is to maintain a flat back and not allow your lower lumbar spine curve, or hyperextend, in this position. This can cause back injury and strain to bones and ligaments. Notice how the female in this image has her back flat, shoulders square, and knees bent. Try to hold this for 30 seconds at a time. Maybe if you feel strong enough you can extend your legs out and balance on your toes for a full plank. Work up to this position. To make it even harder, extend your arms below you to hold a full push up position.
Full plank position from elbows:
Second is the side plank. This will work your oblique abdominal muscles. You can modify from a full side plank as seen in the image below. Balance on your knees with your legs bent at a 90 degree angle. If you feel stronger, straighten your topmost leg out and try to hold the position. Work up until you can have both legs straightened out and holding a full side plank. Ty to hold this position for 30 seconds at a time.
Try to hold each exercise for 30 seconds at a time without dropping form. However, if you feel you need to, please do. The most important aspect of this exercise is to hold perfect form. If you feel strong, do 30 seconds of regular plank, then a 10-20 second break. Then immediately do 30 seconds of a right side plank, 10-20 seconds rest, 30 seconds left side plank, and repeat the three exercise cycle 2-3 times.
7. Exercise 6: Walking High Knees!
Walking high knees are exactly that – as you take a step raise the opposite leg up to your chest and continue to step and alternate the leg that you raise. You can do this around the house or even up and down the steps in your home or on the bleacher steps in a stadium. Do as many as you can. I try to aim for 20 for each leg. You can also choose to hold or hug the knee into the chest to add a small stretch in the knee raise. If you want, you can make these harder by doing high knees at a running pace, trying to get your knees up as high as possible.
Want to make a bit harder? Do what I like to call “The Frankenstein.” These are also done walking and I also aim for about 20 each leg. This is a great addition to a warm up for any workout!
8. Exercise 7: Walking Lunges. Walking lunges are going to be fabulous for your legs, glutes, and hips. MAKE SURE your knee remains at a 90 degree angle over top of the heel! You will lunge into each step that you take, making sure your front knee does not go past your toes, and THE WEIGHT IS IN THE HEEL. This is the heel that you will PRESS all of your weight into in order to step up and into the next lunge.
This is just a basic set of exercises that will get you started in the mornings or any time of the day and get you on your way to a healthy lifestyle habit! These are not all of the basic things you can start with, just some of my favorites that I tend to teach. I could have added many more to this post, but I will save them for another post!🙂 I hope you can do some of these and think that it helps you get started!
Stay tuned for more!
I am currently doing the whole 30 challenge which consists of me eating nothing but whole foods for 30 whole days. Here is one of my favorite easy soups that I make on the weekends and then have it portioned and ready to go as long as it lasts in the freezer or fridge. When you have something portioned, it is hard to not just heat it up and eat it, rather than resorting to quick, packaged foods!
Creamy Coconut Chicken and Tomato Soup
- 3 large frozen skinless boneless chicken breast
- 2 tablespoons chopped freshoregano
- 1 tablespoon chopped fresh basil
- 2 cloves minced and smashed garlic
- 1 14 oz can of coconut milk (make sure it is only coconut milk with no additives!)
- 1 14 oz can diced tomatoes and juice
- 1 cup of water or homemade/store bought chicken broth
- 1/4 tsp Sea salt
- Place the frozen chicken breasts in the bottom of the crock-pot and let sit while you prepare the spices.
- Add the remaining ingredients to the crock-pot and cook on low for 9 hours.
- After 9 hours, take two forks and shred the chicken and stir until everything is mixed well.
- Keep soup on “warm” until ready to serve or let cool and portion and store for later!
I got about 8 portions out of this crock-pot meal! I also like my foods spicy, so I added a little bit of pepper and cajun seasoning to taste!
Macro Nutrients per Serving:
Fat: 5.4 g
Carbs: 3.2 g
Sugars: 1.3 g
Fiber: 1.0 g
Protein: 19.0 g