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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.
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.