Are You Asleep?

I crawl into bed ready to go to sleep for the night. Laying there for a minute before I turn to my husband and ask, “can you feel when your body is going to sleep?” He looks at me a little unsure and I realize I didn’t quite explain myself. I have a bad habit of doing that. My thoughts seem to be nonstop and sometimes I just blurt out a comment not realizing that the other person is never along the ride of my thought process. The thing we were talking about 20 minutes ago hasn’t left my headspace. Instead, I continue to think of other possibilities or scenarios or something to add to or a question. And when one of those thoughts or comments or questions finally escapes my lips, I’m often met with a look of confusion like the one my husband just gave me.

I repeat, “can you feel your body going to sleep? Are you aware of it? Like does your body go to sleep before your mind or does your mind go to sleep first?” He thinks for a minute before answering, “I think my mind goes to sleep first. Sometimes I can feel my legs going to sleep, like when they twitch when I’m first falling asleep.” He’s talking about those hypnogogic jerks where your legs sort of jolt as you’re falling asleep.

I’m pondering his response, not sure if it’s what I wanted to hear or not. I was diagnosed with narcolepsy three years ago and I strongly believe I’ve had it my whole life. Sometimes I get thinking about the way I am and then I wonder if other people do “this” or “that” like me. My husband’s puzzled expression was not unwarranted. We hadn’t discussed anything of the sort, but as I laid in bed and my thoughts began to wander.

When you’re a kid you just assume everyone else does things the same way you do. I didn’t know any better. So when he returned the question I wasn’t sure how to explain my answer, as now I’ve realized this is not the normal way people are. I lay for a moment more, thinking how to describe the feeling which prompted my question in the first place.

I inhaled deeply before I explained that I can feel my body falling asleep. My mind is still awake and I can feel like my feet go to sleep first, then I feel my legs, and then my torso go to sleep, then my arms. It’s not the tingling feeling when you say ‘my leg is asleep’ but I feel them get very, very heavy and then I know they’re asleep because they’re not responsive to my brain. I wouldn’t know what it feels like to be paralyzed, but I imagine that’s somewhat the feeling I experience. Like I can lay there and my brain is telling my leg to move or my fingers to wiggle and the signal is lost or unresponsive. I would have to try a couple times and really focus before my fingers would respond. It would be just one finger first giving a slight curl from only the second knuckle to the tip. Slowly the other fingers would follow suit and then my palm down to my wrist.

I guess I always thought that was normal to feel your body going to sleep. Sometimes it makes me wonder though, how many other things about me have I thought was normal?

When I shared this with my writing small group we started talking about how this could be used as a metaphor. I continued with that train of thought after our meeting ended, thinking of different areas of my life that could be plugged into that metaphor. My faith, this world of social media, my mental health. Sometimes we become so disillusioned that we aren’t even aware that we are asleep to the reality. Do we realize the toll social media takes on our lives? Constantly comparing, mindlessly scrolling, subconsciously absorbing all the hidden messages of “you need to look like this” or “you need to live like that” or “make X amount of money.” You may not think it effects you but if you consistently see this [portrayed] happiness that doesn’t look like yours, you begin to wonder why. In what areas of your life are you asleep?

I ask myself: in what areas of my life am I asleep?

I want to be aware. I don’t want to be ignorant of my flaws and missteps. I don’t want to trudge through life clinging to superficial likes and continually waiting to be accepted by a society that I don’t accept!

Romans 12:2 “Do not conform to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God’s will is—his good, pleasing and perfect will.”

It’s not easy, but I refuse to fall asleep to what’s important in my life.

Well, this started as me sharing part of my life and turned into a sermon.

Life is hard. Love always prevails. So let’s be kind to each other and strive to be the best versions of ourselves.

Be aware.

Be real.

Be honest.

And you will attract the most meaningful and important relationships in your life (the kind that won’t fit in those perfect little squares). The relationships that won't let you fall asleep (or if you do, they won't let you stay asleep). They will be the ones that will challenge you and push you to be better.

Praised for Appearances

I have been complimented for my weight several times recently, and instead of feeling good about myself or appreciating the compliment, I find myself offended. Why? Isn’t it every woman’s wish to feel good about her body and to be accepted by society? As someone who used to have an eating disorder, you'd think I would cling to such comments; that I would be proud that I look thin and that someone noticed it. But I’m not proud and those comments don’t make me feel better about myself. Instead, I’m angry. Why are we celebrating women for being thin?! I hope you read that with emphasis because if I were talking instead of typing, I would be clapping each word. The culture of empowering women has come a long way. I’m proud to be in a generation of women supporting women, but so many times we miss the mark. I hope you don’t misunderstand my point here. I know the women who gave me those compliments were doing so to be kind! They genuinely meant to compliment me, but I don’t think we *all women* realize the toxicity of those words. Say in six months or two years I gain some weight back. I probably won’t get those compliments now that I’m not as thin. I will start to feel less than and doubt my beauty or doubt my worth, and that is NOT women celebrating women. We need to shift our narrative. Yes, I say we because I’m a fault too of giving well intended, but shallow compliments. Instead of saying, “You’re so thin!” maybe say, “Wow, you look great!” Change “Omg you’re so skinny” to “You look really healthy and happy." We have to change our perspective and stop assuming a person's health based on what their body looks like. Let’s celebrate feeling good!

In case you didn’t know, a number on a scale is just that- a number on a scale. I used to compulsively weigh myself, multiple times a day. Tracking my food and tracking the pounds, but guess what? Seeing a smaller number on my scale didn’t make me feel better. I wasn’t healthy and I wasn’t happy. I haven’t owned a scale since and I don’t plan to own one any time soon. Yes, I have lost weight recently, but I couldn’t tell you how much I weigh. I’ve been taking care of my body inside and out. I try to watch what I eat but I’m not obsessive about it. I still eat ice cream far too often but I also indulge in my favorite veggies. It’s all about balance. I’m not going to the gym, but I get up and move my body every day. I go for walks almost every day and occasionally I’ll go for a run. I have a toddler so I’m up chasing him, being silly, dancing, and building forts. There is no formula for weight loss. Find ways to move that make you happy. Pay attention to what you eat, but don’t punish yourself for eating “junk” food. It’s taken me a long time to get to this point of being comfortable in my skin. And believe me there are still so many times where I put on an outfit and it doesn’t fit right and those negative thoughts creep back in. But I am a work in progress. Yes, my legs have curves, but I’m not going to waste my time trying to change something that won’t ever really change (at least not in a healthy way). It’s how I am made. I can tone my legs; I can walk and run and move to make them feel strong. So instead of being critical, I am thankful for my legs because they take me places. They allow me to run around with my son. They allow me to walk in the woods, bend down and crawl into pillow forts. Right now I’m learning to be gracious with my tummy. Tummies are tricky little areas that most women struggle with. I would love to tighten up that lower belly area, but in the mean time, I am learning to love my tummy. My squishy, jiggly belly adorned with stretch marks that I am so incredibly thankful for. My body allowed me to grow and nurture and birth life! Guess what? When I bend over I get a fold in my stomach because I have skin and muscles (and fat) that allow me to move! Without that I couldn’t bend over and play with my son. Life is too short to hate the skin you’re in; to squeeze into spanks and suck it in. Love your body, because it’s YOURS and you can’t get another, and speak kindly to her as you become your thoughts.

I want to briefly comment on the flip side of this attitude. I’ve seen some women (especially plus size women) go to the extreme of being proud of their curvy figures. I admire their confidence of wearing a bikini with big thighs and jiggly arms and their “this is me” attitude. Like, YES DIVA QUEEN BE PROUD, YOU ARE BEAUTIFUL! But I don’t think we should praise where we’re at (cellulite and all), and stop there. I believe we should always strive to become better versions of ourselves. Yes, be proud of where you’re at! But don’t stop there. Continue to work towards feeling healthy inside and out. And celebrate the process! Because you will never fully “arrive” at your goal. You may lose some weight, but then you’ll want to tone your arms. So you tone your arms, then you’ll want to improve your skin. I don’t say that to be negative or discourage you from trying. I say that to be realistic. To understand that you will never “arrive” but that is the beauty of it; it’s a journey! So enjoy the process. Be kind to yourself and to others. Remember to stop playing the comparison game because we are all beautifully different (thank God), and a person's body does not equate to their health. Let’s lift up all forms of beauty and feeling healthy!

p.s. I strongly recommend taking some b&w photos of yourself. You don't have to post them anywhere, but show some self-love, and allow yourself to feel confident and empowered.

Strong But Exhausted

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December 21, 2017. This day will forever be engrained into my mind.

Everyone has those defining moments in life that truly affect who they are and who they become, how they view themselves and how others view them.

On this day, I remember sitting in my doctors office, anxiously awaiting my test results. Stomach in knots, he sat down with the three measly pieces of paper that would confirm my suspicions. After years of struggling (and suffering), I was diagnosed with a chronic illness.

I have narcolepsy with cataplexy. Without going into too much detail of the actual medical description, basically my brain cannot regulate my sleep/wake cycle. I have been plagued by overwhelming sleepiness for years without actually knowing the cause. Narcolepsy is commonly misdiagnosed since it is a pretty rare illness and many of the symptoms mimic depression. I’ve had clinical depression since high school and my narcolepsy went masked as depression for years (probably about 10 years to be honest). After several different doctors and countless different medications, it was finally time to get a sleep study and with that, hopefully, some answers. I did an overnight sleep study (Polysomnogram or PSG) and a day study (multiple sleep latency test or MSLT). After a long 20 hours in the sleep lab, I went home to wait another week or two for my results. Although I knew there was a very strong possibility that I had narcolepsy, and part of me had already anticipated my results to come back positive, I still wasn’t prepared for that Thursday in December when my doctor officially diagnosed me.

I remember first feeling a slight relief; almost smiling. I finally had an answer for my symptoms. For anyone who thought I was simply lazy or disinterested, I now had proof. But that feeling was was almost instantly replaced with fear. I half listened to my doctor explain what this would mean for me, and how I would have to live my life. Half listened while holding back tears as he told me the challenges I would face when wanting to have children. I left his office holding the three papers that felt so flimsy in my hands, but so heavy to my heart. I remember taking the elevator down and walking to my car. The world felt so quiet and so loud at the same time. As if it wasn’t the world’s noise I was hearing, but the ringing in your ears you hear when you’re about to get sick. It was warm outside for December, and I sat motionless in my car trying to process what this all meant.

The first step was finding out what medication would work for me. I would also have to make lifestyle changes to accommodate this chronic illness. It isn’t something that I can fight or ‘get better’ from. There is no cure. There is no replacement for restorative sleep. Period. All I can do is adapt and do my best to live as normal of a life as I can.

I have narcolepsy. I have narcolepsy. It didn’t seem real, and saying it out loud felt like a joke. Some days all I wanted to do was stay in bed and cry. I knew feeling sorry for myself wasn’t going to fix anything or make me feel better, but in the moment I didn’t care. I couldn’t fight back the tears when I would think about it, so I let myself be sad. I let myself hurt and cry and wallow (as I learned from Lorelei Gilmore, you just need to wallow). I believe there is healing in pain. It’s good to feel your emotions and let them out. I am the type of person who feels everything so deeply. I used to not like that about myself. I can be too sensitive or too passionate too fast or sink into the deepest hole of depression, but I’ve learned to love that part of me. I love that I have such emotional capacity. Yes that means I can hurt deeply, but it also means I love so deeply. And after letting myself wallow, after letting myself feel all my emotions and process it all, then I move forward. I still struggle, but I don’t let myself stay there. I am learning to overcome my chronic illness. I refuse to let it control my life. There is so much I want to do and experience. I just have to accept the fact that I have to approach it differently. I have to portion out my energy. I know I can’t overdo it or I will be useless the next few days. I need to learn how to motivate myself (that is proving to be the most difficult). I no longer have the luxury of being able to wake myself up. A basic human skill in life. I’m learning to live on a schedule (which I hate) to help myself not only wake up in the mornings, but to accomplish daily tasks I need to do and continue pursuing the things I want to do.

With narcolepsy, I struggle mostly with fatigue or EDS (excessive daytime sleepiness). And with that comes a lack of motivation. Fatigue is different than feeling tired. If you’re tired you can take a nap or get a good night’s sleep and feel better. But fatigue doesn’t go away. I will never wake up feeling refreshed. I will never wake up feeling like I got a good night’s sleep and have energy to conquer the day. I also struggle a lot with brain fog, which truly just feels like your mind is clouded. It makes forming a simple sentence difficult because the words just won’t form. It takes me longer to process a thought or put into words what I’m trying to say. But I am learning to adapt and move forward. I’m learning to portion out cleaning, laundry, grocery shopping, etc. so that I don’t use up all my energy, but can still get things done. It has been really hard to continue with the leisurely things I enjoy doing. My energy first goes to the things I can’t ignore (i.e. work, showering, cleaning the apartment enough to live comfortably, making food to eat), so I’ve not had much energy/motivation left for writing, journaling, making art, etc.

I am learning every day. I’m learning what works for me and what doesn’t. I’m learning to spread out my chores/activities/socializing so I don’t overdo it. I’m learning a lot about myself in the process like when to listen to my body and when to push though, when to give myself grace and when to be a little tougher on myself. Having a chronic illness can be very isolating. Incredibly isolating. It’s called an invisible illness for a reason. No I don’t look sick, but I promise you I’m not “just tired.” Even now that I have a diagnosis, it is still hard to explain and people still don’t understand. So I’m also learning to have grace with other people. It’s hard to answer the stereotypical questions about narcolepsy, but I’m learning to articulate what it’s like and help educate anyone who inquires.

I can’t say I would be where I am now if it wasn’t for my husband. I have an incredible support system with my friends and family and I am so blessed to have each an every one of them in my life. But my husband has been so incredibly patient and understanding, especially as my symptoms got worse and worse and began to completely consume me before I got my diagnosis. He has been my number one encourager throughout this whole journey. I’m also thankful that I serve a God who is bigger than this. I could easily be angry with God (and believe me there have been times where I am). But I have faith that He will use this, use me, for His works. God is bigger than my illness.

I still struggle. I still cry and hurt. I still get so frustrated that I can’t do too much in one day, or get mad at myself for sleeping all day. But this is a process.

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I wrote that shortly after my initial diagnosis, but I haven’t felt ready to share it until now. A lot has happened since I wrote those words. I went through trial and error of finding the right combination and dosages of medications that would work for me. I began to find my rhythm. Then I found out I was pregnant. Something I had wanted for so long! But I couldn’t help but fear the worst. I had to go off all my meds. My meds that were finally helping me feel “normal” and able to function. I thought I would lose my job, because how could I go back to that fatigue plus the sickness and tiredness that comes with pregnancy and hold down a job? But I was so wrong, and I don’t think I’ve ever been happier to be completely and utterly wrong about something. I’ll share more about my pregnancy and birth story later on, but the spoiler is: I felt amazing! Not just good. Truly amazing! I told my husband I hadn’t felt this energized since I was a little kid. Human bodies are crazy things. I continued to feel great postpartum too and I could hardly believe it. Was I cured? Would my symptoms come back? I of course experienced the sleep deprivation that comes with a newborn, but it was a different kind of tiredness. It’s hard to explain but tiredness and fatigue are very different. I could still function. I know mama instinct kicks in, but it was still different.

So here we are, 7 months postpartum, and it all comes crashing back. I started sinking back into my hole. I desperately longed for my bed, and would sneak away for every second of sleep I could get as soon I put my son down for his nap. It took me a week or two to recognize this isn’t a tough week, this isn’t postpartum depression. I know these symptoms all too well, but I was being naive. I didn’t want to admit my narcolepsy was back, but there was no denying it. And I’m really struggling. I’m hurting all over again. I’m trying to stay strong, but now I know what it’s like to feel good and have energy and live life normally, and I desperately don’t want to give that up! I’m learning to be honest and vulnerable, and I’m ready to share my story with the world. I’m not alright, but I will be. I’m trying hard to be more transparent about my mental illness and chronic illness because I have to take care of myself now for the sake of my son, and wow does that change things!

To anyone who has read this, thank you! Thanks for listening to me pour out a bit of my heart. And if you are struggling, please know you are not alone. In a world where we paint a picture of our perfectly manicured lives in those nice little squares, know others out there are hurting too, sometimes they’re just too scared to admit it. So let’s be more honest with ourselves and with each other. Let’s talk about real things; the dirty, scary, ugly, hard, and painful.

I’m scared to post this. I’m scared out of my mind to put myself out there for anyone and everyone to pass judgement on. But behind those perfectly curated little squares are real people. And the world we live in is pretty cool in the sense that we can connect with someone we may have never met otherwise. So with sweaty palms I’m hitting ‘post’ and jumping in.