When Sleep Disorders Go Unnoticed

An estimated 50 to 70 million Americans chronically suffer from a sleep or circadian-related condition (Project-Sleep). And it turns out I am one of those people. However many sleep disorders go undiagnosed or unnoticed simply because people don’t realize they have them. I was one of those people for so many years of my life. I wasn’t diagnosed with narcolepsy (without cataplexy)until the winter of 2015. But I was having symptoms, that I can remember, for several years prior to that.

Growing up, I was that teenager that slept until noon and had to have my parents force me to wake up, get out of bed and do something productive with my day. Yes, many teenagers sleep until noon. I mean why wouldn’t they? They have no responsibilities.

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And yes, sometimes I would go to bed much later than socially acceptable at that age, leading me to sleep until noon. But, sometimes I would go to bed at 10 pm and still was able to snooze and snooze until also much later than socially acceptable. I never thought anything of it, though. But I had created a reputation for myself in my family as the girl who sleeps the day away. I tried hard not to carry that reputation over into school, but alas, it happened. In my senior year government class, for example, there was one time where I fell asleep (in the front row, mind you) and hadn’t realized I fell asleep until my sleep talking woke me up. I sat in the middle of two girls who looked at me and kindly said while pretending they weren’t extremely confused, “Are you ok? Were you sleeping?” See, it wasn’t normal to sleep that much during school. It really wasn’t the cool thing to do.

When I went off to college, I realized that I could nap whenever I wanted and wouldn’t have my parents waking me up every 5 minutes telling me to get up and sweep the kitchen or some cliche chore that they made you do just so you were doing something. So when I went to college I was like…wait I can nap in freedom? Whenever? That’s the American dream! And as a true patriot, I lived out that dream. But, I never realized that I napped a lot more than some of my other friends did. I napped through some evening classes and didn’t care because my body was so tired.

There are many stories from my college years that I realize now were not normal….Yes, sometimes students fall asleep in class (late nights doing absolutely nothing with your friends or alcohol often caused this), but not as often as I did, it seemed. The looks I would get from my roommates and friends when I either slept in past my class or when I told them how I kept falling asleep in class, that look is definitely a judgmental one even when they act like they aren’t judging you. It ain’t a good face.

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One time during my freshman year econ class, I apparently fell asleep. I say apparently because I didn’t realize it until I jerked awake suddenly (are you noticing a pattern here?) I looked at my two friends sitting next to me and said “why didn’t you wake me up?” And they said “because you were snoring, but like a cute snore. We didn’t want to wake you.”

I also specifically remember my senior year, trying so hard to force myself to stay awake during my Communications Law class. And this wasn’t because the thrilling content of comm law didn’t have me on the edge of my seat and it wasn’t because of a lack of effort to pay attention on my part. I remember after a few classes of dozing off in the back of the room, that I made an effort to move to the front row. I told myself if I sit in the front, there’s no way I can’t pay attention therefore I would stay awake. Sit in front + pay attention = stay awake. Basic math, right? Well I was never good at math. I had to force my eyes to stay open. It was painful, honestly. Like, physically painful because my eyes would be so incredibly heavy and I had to actively out effort into making sure they didn’t close right in front of my professor. And the thing is, this class was my first class of the day, and it was at 2 pm. So it’s not like I was waking up at 6 am for an early class. I was easily getting 9-10 hours of sleep each night, if not sometimes more than that. So I was getting enough sleep, I was making full effort to pay attention in class, yet I still struggled to stay awake.

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After graduation and convincing myself that the college life was the cause of my exhaustion, I got my first full time job. It was during training one day where I was literally dozing off while a colleague was training me that I realized this was a problem. But yet, I didn’t realize it was a problem that could be diagnosed. And I wasn’t sure how to solve my problem. I also had other health issues to focus on so my sleepiness took a backseat.

Actually, the only reason I got the diagnosis for narcolepsy was due that other health issue I had: my chronic daily headaches. The PA I had been seeing for a couple of years who had been with me through each treatment that I had tried and that had failed me, suggested I do a sleep study to see if I had sleep apnea (since I consistently wake up with headaches, she thought maybe I wasn’t getting enough oxygen during the night.) After the sleep study, my PA pointed out to me that I didn’t have sleep apnea, but surprisingly enough, I had narcolepsy w/o cataplexy. She explained that even though this was not expected, it was actually good to see test results that didn’t show as “normal” because i finally had some answers. I finally had reasons for all of the above scenarios. I had a reason for falling asleep during classes, for sleeping in until noon and for dozing off during a full time job. I finally understood why.

It’s extremely frustrating to feel symptoms and have no idea why they’re happening and have nothing to connect them back to. And to be honest, I was completely ignorant to sleep disorders in general and it never even crossed my mind that I might have been living with one. If it weren’t for my PA suggesting that sleep study, I’m not sure when I would have found out I had narcolepsy. Perhaps I still wouldn’t know today.


The message here is that it’s so important to learn the signs of sleep disorders, because sleep disorders are invisible and difficult to detect. Sleep health is much more important and impacts our overall health more than most people realize.

Take a look at this website, Project Sleep, to learn more about sleep conditions/disorders, how to detect symptoms, and what to do if you think you may have a sleep condition/disorder!

 

Disclaimer: The Headache Heroine website and blog does not provide medical advice, diagnosis or treatment.
Content from this website and blog is not intended to be used for medical diagnosis or treatment.  The information provided on this website is intended for general consumer understanding and entertainment only.  The information provided is not intended to be a substitute for professional medical advice. Please consult a medical professional for professional and medical advice.

Scars

Scars. We all have them. Whether they’re visible on our skin or deeply hidden underneath it. Either way, we often times try to hide them for everyone else. Doing our research into the most effective cream or at home treatment to rid our skin of its imperfections. Putting on a brave face for the world, giving into our vices or faking love for someone or something else to protect ourselves from whatever imperfections we feel we have on the inside.

Why do we feel the need hide them, though? Is it because we’re afraid of what people may say or think? That they might point, stare and ask how we got those ugly scars? Because if they stare, then we feel vulnerable, self-conscious and very aware that we don’t look the way that we think we should. Maybe we don’t want to explain how we got them: A noble military wound. The evidence of a stupid, teenage stunt. An accident due to being in the wrong place at the wrong time. Because if we have to explain how we got them, then we’re just reliving those bad moments that we try so hard to forget or are too embarrassed to reveal. We hide these scars so we don’t scare off the unknowing people who may raise their brows when they see them. They may become fearful of the things that gave them to us, thinking that maybe they too will be victims of similar situations.

But we fear the same things when dealing with the scars others can’t see, as well. Why do we feel the need to hide those? Are we afraid that if we open up about them and make them visible to everyone else, that it’ll make them that much more real? Maybe people will judge. The people who seem to have nothing breaking them on the inside will judge and we will feel our wounds reopening, increasing the risk of infection with every word that reluctantly spills out of our mouths. They will point and stare and wonder how we got these scars. Maybe we don’t want to explain how we got them. A broken heart. A broken home. Constant uphill battles that we can’t seem to win. Because if we tell them how we got these scars, we’re reliving the moments that broke us. The moments that sent us into a darkness of which maybe we’re finally finding some light in. We don’t want to share these parts of ourselves with others because it could scare them off. Make them fearful of the things that gave them to us. Questioning if they, too, could be a victim to similar situations.

Now you see why, of course, we try to hide them. We don’t want to put ourselves at risk by exposing them. And that’s because people can’t understand how you felt when you got those scars. They can’t put themselves in your shoes because there’s a chance they haven’t been in similar situations themselves. They were never in the military, or never got hurt doing something a stupid teenager would or they never were victim to an accident by being in the wrong place at the wrong time, So yes, you can hide your scars with layers of makeup and clothes. Yes, you can hide your imperfections from other people who may not understand the physical pain that led to those scars because they don’t have any themselves.

But when you feel like hiding the scars that aren’t visible, remember that everyone has had a heart that needed mending at one point. Everyone has scars on the inside, just like you. It’s just, that everyone pretends not to. So people come across like everything in their life is as it should be. We look at them and see only what they want us to see. That things are great, always have been and always will be. When in reality, below the surface, they aren’t as perfect as they look to be. Therefore, we don’t see past other people’s facades, which results in us feeling alone in our suffering. But the fact is, we wouldn’t feel so alone if we knew that other people were trying to heal similar scars just as we are. So, if we open up our hearts to others, and share with them the stories of our wounds, we would end up finding that they too have very similar stories. If we stop hiding the imperfections in our heart that make us who we are and the stories that made us the way we are, everyone else would see that they weren’t alone.

So, I’ll share some of mine.

I struggle with chronic headache disorders that have beaten me down many times in many ways. They’ve broken my spirit, tested my faith and beaten my body. They stir and strengthen my anxiety and make me familiar with a level of pain of which I’ve involuntarily learned to fight through. They’ve stolen from me and they continue to steal from me.

I’ve had many setbacks in my health. New diagnoses, new medicines with no new results and new doctors. Meaning, more symptoms, more side effects, more time wasted in waiting rooms and more blood tests, IVs, MRIs, you name it.

I’ve loved and I’ve lost. I’ve experienced a heartbreak or two. I’ve gone from being someone’s “person,” to being a distant familiarity, to being a stranger.

I have family members I’ll only ever know through stories I’m told. My vivid imagination giving life to people I’ve never met or never grew old enough to form a relationship with.

I’ve lost friendships to time, distance and the inevitable changes that life brings. Bonds that were once close have melted away. People who I shared belly aching laughter with now feel like people I would have to reintroduce myself to.


Maybe your scars look a little similar to mine. Maybe your scars look completely different. No matter how we got them, we all have them. So instead of pretending we’re all untouched and unscathed, maybe we share our stories and help heal each other’s scars.

Patience is A Virtue

Growing up we are told to “be patient.” Starting from when we were just little ones, we would hear “be patient” from our parents as we relentlessly tugged on their clothes to get their attention. As adolescents, we would beg for the newest thing to keep up with the trends and fit in with our friends. “Be patient,” our parents nagged.  As adults, we want our dream job right out of college, we want to own our own house as soon as we can, and we yearn for our fairytale relationship that we so envy in other people. “Be patient,” we hear from all directions. In an environment where everything is so rushed, it’s hard to practice that particular advice that we’ve been given since day one.

 

Patience is a weakness of mine. I’m notoriously impatient, actually. I have a bad habit of interrupting people when they talk, I sing lyrics to songs two seconds too early and I get so antsy waiting in lines that sometimes it physically pains me. But where I’ve been most impatient, lately, is with my health. I’ve been going through another bad spell–headaches pounding when I wake up that, more often than not, get worse as the day goes on. Leaving me frustrated and pouting, or pushing myself past my limits and making the pain worse.

 

I’ve made a lot of changes in my life recently, though, so I know there are multiple factors to consider when trying to figure out why my headaches have taken a turn for the worse again. I moved into a new house, I was on and off my Vyvanse for my narcolepsy, the season is changing, my allergies are kicking in, the list goes on and on.

 

But instead of being patient and taking it day by day, I’ve been jumping to conclusions quicker than most. I have been automatically assuming that it’s my house that’s making my head worse. Or that my chiropractic and botox treatments are no longer working. I always assume that I’ve figured it all out and that I’ll just never feel better.

 

Take it from me, it does NOT help to be impatient in this way. Well, it really doesn’t help to be impatient in any way, but you get the point.

 

For me, and others who have multiple chronic illnesses, it’s so important to remind ourselves that there are so many different factors at play when it comes to our symptoms. It’s never just one thing for me that is causing my symptoms to flare up badly. My headaches are affected by countless factors: for example, humidity, allergies, the heat, my environment, how tired I am, exercise, stress, anxiety, etc., etc. It’s more often than not, a combination of a variety of things. Which makes it very hard to pinpoint what is causing the flare. Which is why my impatience usually kicks in full gear–because I can’t pinpoint a reason and therefore cannot see an end to the flare in any foreseeable future.

 

So here’s where I tell you the words that you’ve been hearing since day one: Be patient. Take it day by day, literally. Each day is a new day with the possibility that something may change–some things may get better. But the fact is, we won’t know until that new day comes. So take a deep breath, and be patient.  

Be joyful in hope, patient in affliction, faithful in prayers.

-Romans 12:12

2017 WEGO Health Awards–Vote for The Headache Heroine!

I am excited to share (even though I may have already initially shared) that I have been nominated for the WEGO Health Award in the 6th Annual WEGO Health Awards! Last year I was nominated for three categories and a finalist in two. This year, I’ve been nominated for two categories: Best in Show: Instagram  and Best in Show: Twitter.

WEGO Health is a mission-driven company connecting healthcare with the experience, skills and insights of patient leaders. They are the world’s largest network of patient leaders, working across virtually all health conditions and topics.

The WEGO Health Awards were created to celebrate those who tirelessly support the mission of WEGO Health: to empower the patient voice. With 16 award categories, the WEGO Health Awards are the only awards across all conditions and platforms, that recognize the over 100 thousand inspiring Patient Leaders who raise awareness, share information, and support their communities – but often without recognition.

Being nominated means that I have in some way, shape or form helped another person like myself–someone who struggles with health issues and who may have at one point felt or still feels totally alone in their journey. I’m so glad that I can use my experience to empower others to feel empowered.

I’m looking to you, my incredibly supportive network, to help endorse me for this award.

Click here to be taken to my WEGO Health Awards profile and click “Endorse” under my nominee photo. You can vote twice–once for each category that I have been nominated in!

If you’ve ever felt touched by something I’ve written and shared, if I’ve ever made you laugh or inspired you to keep fighting–please consider endorsing me for this award!

Thanks fam 🙂

Vote for The Headache Heroine in the 2017 WEGO Health Awards!

I’m so happy, humbled and honored to say that I’ve been nominated again this year for the 6th Annual WEGO Health Awards!!

 

Last year I was nominated and became a finalist in three different categories. It was such a cool experience and I got to speak with so many wonderful patient leaders.

This year, I’ve been nominated in two categories: Best in show: Instagram and Best in Show: Twitter! I would very very much appreciate your votes! You can visit my nominee profile here and you can vote once for each category! Just click the endorse button below my page 🙂

Thank you so much for your love and support ❤

 

Do Only What You Can Do Today to Create The Reality You Want for Yourself Tomorrow.

 

I have a very hard time accepting my own reality. I’m sure many people experience that every once in awhile. Like when you were younger and you were grounded but you really wanted to go to that party, so you convinced yourself that you weren’t grounded and you went anyways, only to get into more trouble. It probably would’ve been better to just stay home, accept your punishment and wait for the next party. Or like when you know you have a million things on your to-do list, but you still go out and grab drinks with your friends or binge watch all of the real housewives episodes, only to then stress yourself out even more knowing you achieved nothing. We would be so much better off if we just accepted our reality as it is in that present moment, rather than pretend we are living some alternate reality that we daydream about.

 

Currently, I wish that I could be more physically active than I know I can be. I listen to friends talk about their workout routine and how they’re losing weight and growing stronger and more confident. I’m happy for them. I am. And after the few minutes of acting like Eeyore knowing that my body can’t do all of the the things that theirs can, I then convince myself that I actually can do what they’re doing. Why should my life be any different? They all face difficulties themselves. They pull muscles, tear ACLs, herniate a disc, etc and they all end up recovering and getting back into their exercises weeks or months later. So what’s stopping me from doing the same?

 

This is when I need a pretend slap in the face to wake myself up to my reality and the fact that my reality is not anyone else’s reality. My headaches intensify not only when I lift weights, or run or do yoga, but simply even when I walk up stairs, bend over, or push furniture around. My exertion headaches have no mercy on activity level. It’s something I’ve been dealing with since I was a teenager. I half expected them to be gone by now, but again, I was only kidding myself, right?

 

While I know I can’t squat big weight or run on the treadmill in order to lose weight and gain muscle quickly like “normies,” I do know that I can do just what I am capable of and no more. I have learned to endure the headaches throughout a workout and stop myself when the headaches grow to be more than I can handle. (It helps that I can handle more than someone else may due to the longevity of my illness.) Each day I have to remind myself that my routine will be very different than anyone else’s. I am unique and that’s ok. I won’t be as physically fit as I dream of, but I can do what I can to get close to that dream. I’m learning to accept my body and it’s limitations, but it’s something I have to remind myself of and teach myself daily.

 

So, just today, I’ve created a workout plan for myself. Two days of weights (more reps, less weight-in order to keep the impact low), three days of yoga (check out Yoga With Adriene, she’s awesome!) and two days of rest. Now, I know that this is an ideal plan. I know that my illnesses will throw curveballs at me and that there’s no way I will be able to stick to this routine as strictly as another person may be able to. I’m bound to have a migraine or narcolepsy spell come in and make me miss a day or two. It’s inevitable. I can’t control that. What I can control is how I accept the fact that I can make a routine, stick to it as best I can, not push my body more than I need to, and be cognizant of the fact that there will be days when my illness throws my schedule out of whack.

 

We have to learn to accept our realities as just that–our realities. We can’t compare ours to anyone else’s, just as someone else shouldn’t compare their reality to ours. We must constantly adapt, though the frustrations will want us to do otherwise.

Ehlers-Danlos Awareness Bundle Giveaway!!

I’m co-hosting a giveaway for an Ehlers Danlos Syndrome awareness bundle with five other awesome bloggers!!  My co-hosts are Hannah from Sunshine and Spoons, Sarah from My Stripy Life, Brittany from A Southern Celiac, Sara from A Zebra Writes, and Jenni from 1visibl3Girl

Giveaway rules: 
  • Shipping for the bundle is free to residents of the US and Canada.  All others will be asked to cover the cost of shipping.
  • All entries will be verified.
  • Your email address will only be used to notify you if you win.  It will not be used for spam you or anything like that, I promise!

Here’s what’s in the giveaway:

 

Click the link below to enter!!

EDS Giveaway!!

 

June is Migraine & Headache Awareness Month!

June is Migraine & Headache Awareness Month! This month is dedicated to advocating for patients like myself who suffer from an invisible illness that is much more debilitating, physically and emotionally, than most people know.

I’ve lived with migraines & exertional headaches for a little over 10 years now. They have changed the way I live my life entirely. I had to stop playing sports, start avoiding the hot/humid weather, try to accept that I can’t live as active a lifestyle as I wish and overall adapt to the diagnosis.

I’ve lived with chronic daily headaches (meaning no days with a “0” pain level) for around 3-4 years now. This has had a much bigger impact on my life than my migraines, because while my migraines are extremely painful, they only happen on occasion. These chronic daily headaches have become my new norm–they’re like my shadow, always there. The only time I don’t feel them is when I’m sleeping. My chronic daily headaches have resulted in many mental health ups and downs, anxiety, relationship/friendship strains, tons of forced FOMO, many days at home missing the fun, etc.

But this is not meant to be a sob story post. Instead, this is meant to be a post that opens peoples eyes to the debilitating nature of migraine and headache disorders. There is an urgent need to increase awareness of the impact migraines and headaches have on a person’s quality of life. Let’s spend this month (and every month after) shining a light on these disorders and advocating for everyone who deals with them.

2017 Migraine World Summit–The Event of the Year!

Last year, I was so fortunate to receive an email making me aware of an online event called the Migraine World Summit. I didn’t know what it entailed and I wasn’t sure what to expect, all I knew was that world known doctors would be interviewed about migraines, headaches and everything that comes along with them. So I immediately signed up to participate!

There was so much information being talked about–and there was a week of interviews that were available for me to watch! Best part? I was able to participate and watch straight from my bed. Score.

This year, ‘m volunteering for this international event that is going to bring thousands and thousands of participants. I can’t wait to hear what the people interviewing have to say! BTW, some of the people being interviewed include leading experts and doctors from the National Headache Foundation and the American Migraine Association. Sooooo yeah, that’s pretty awesome.

The event begins next week, April 23rd!! Make sure to check out the website here: https://www.migraineworldsummit.com/ and register for the event! I promise you will learn very valuable information and perspective on the migraines and headaches that you’ve been battling day in and day out.

“How To Live Well With Chronic Pain & Illness” Educating Family & Friends On Your Condition/Illness

I’ve had a difficult time finding people and words out in the world who understand (or at least nearly understand) what I feel from day to day as someone who lives with a chronic invisible illness. I often scroll through blogs written by people with their own chronic illnesses and one day I came across a blog that talked about this book called “How To Live Well With Chronic Pain And Illness” by Toni Bernhard. The author of this blog wrote something about how this book has helped her cope and become more mindful in during her day to day life with a chronic illness. I decided to check it out. I bought a copy on Amazon and immediately dove in. Each page has something that strikes a chord with me. Each chapter provides new insight as well as much needed comfort and understanding. While the author of this book doesn’t live with the exact same illness that I do, she is able to connect with me so well because the emotions and situations that we face are nearly identical.

Each week, I will summarize a different chapter and provide the tips/advice/insight that I found most helpful. I hope you find this helpful, and then maybe even go purchase this book for yourself!

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Chapter 1: Educating Family and Friends about Chronic Pain and Illness

“The only way to make sense out of change is to plunge into it, move with it, and join the dance.” – Alan Watts

It may take a while, longer than we want, for family and friends to adapt and adjust to our lives with chronic illness. I know from experience that the people who love you will try their damnedest to understand everything that you are feeling and going through. Of course, that’s not possible, since they aren’t going through it themselves. However, the effort is all that matters. It can bring about frustration for us when we feel like our loved ones really just don’t get it–but instead of getting frustrated with the ones who care for us, instead we should try to educate them on what exactly we are going through, to help them better understand and in turn better love and care for us how we need to be loved and cared for.

  • Share information from the internet or other sources
    • A quick Google search can bring about a number of organizations and associations that are devoted to your condition/illness and others like them. You could print a few pages, send links through emails, or just read through them with family and friends. You can let these people know that it’s important to you that they go through the information–don’t treat it like a test though–keep it lighthearted!
  • Communicate in writing
    • This is always effective for me–mostly because I cry every time I talk about something that is either very important to me or about something that has affected my life heavily. Actually, I just cry when I talk about a lot of things–I’m just a sensitive person and proud of it! So for me, I feel like it’s a lot easier to get out everything I want to share with someone through writing (clearly, since I have this blog.) When you write a letter or note to someone, make sure to use “I” more than you use “you.” You could start by describing your day to day life with a chronic illness, explain to them how you have had to adjust your life because of it and just let them know how you truly wish you could be as active as you once were–because sometimes it’s hard for outsiders to understand that we just can’t do the things we once were able to. Toni made a good point in this chapter–she said you could write to them about how the way you will “feel on any given day is unpredictable.” This is so completely true for me, and I find myself reminding my friends and family of this as often as I can.
  • Work on accepting that some people you’re close to may never treat you the way you’d like them to
    • This is something I still struggle with, but I’ve become much more comfortable with over the years. Some people may not show an interest because they think that if we want to talk about it, we will bring it up. For me, I think this rings very true for a lot of the people in my life (just assuming) and I’m ok with that. It’s nothing wrong that they’re doing or feeling. One really important note that Toni says in this chapter regarding this point is: “Understanding that others have their own ‘demons’ can lead to compassion arising for them, even though they’re letting you down. Compassion for others tends to ease your own emotional pain because it takes you out of your self-focused thinking.” We need to understand that everyone has something. We can’t take it personally when they may not always remember to ask us about ours.

I have an amazing support system built of family and friends that I hold near and dear to my heart. They all are understanding and accepting of me, no matter how I’m feeling or how my health changes. There are some people who I have accepted may never be as understanding as the next, but all that matters is that I have a solid group of people who love me and accept me whether I’m having a 1/10 or 10/10 pain day.

Next up will be: “Letting Go: A Not-To-Do List for the Chronically Ill”