Narcolepsy and cataplexy
One day at work, I turned from talking and laughing with my friend Mary Ann, and collapsed to the ground, unable to move or talk for several seconds. How strange. I must've forgotten to eat breakfast and was a little light headed. I got up and finished working.
One time, I stood in my friend Lizzie's kitchen and dropped my mug of freshly made coffee. Weird. The mug was slippery though so that must've been why. Or maybe it had something to do with that weird thing that happens every few days where I can't hold anything in my hands and my arms feel really weak... I don't know. I really should eat better!
Another time, I was holding a friend's baby at an outdoor birthday party, and suddenly found myself sitting on the ground. What the what? Did my hip, that sometimes has weird problems, just give out on me? That had to be it.
One Sunday morning, I stood singing for special music with the rest of our music group, and realized my knees were literally knocking together and I couldn't make them stop. What in the world? Was I nervous and just didn't realize it? I kept singing and focused on keeping my knees together. I was relieved that my knees made it back to my pew.
Anytime I laughed, my knees would melt. Like a square of butter on a frying pan. And sometimes that melting would spread to the rest of my legs until I couldn't stand anymore. Everyone probably did this! I laugh REALLY hard. Ask anyone! It was totally normal. I mean, I can literally make babies cry in terror when I laugh. I should really get control of that.
Jello legs. That's what I call it. Or jello arms. Jello hands. Jello neck. Jello face. Good grief, jello body. It happens anytime I laugh, get angry, am startled, try to lift anything too heavy, go for long, brisk walks, raking leaves, trying to swim, getting super overheated, or with extreme exhaustion.
Speaking of exhaustion, I have it. I found out recently that the level of sleep deprivation that a narcoleptic feels on a daily basis is comparable to a normal person going 48-72 hours without sleep. No wonder I was falling asleep constantly. One minute I'd be just fine, and then the next, I'd feel that hazy, fuzzy, excruciating darkness creep up on me pushing my eyelids down.
But, hey... I could fight it! I could close my eyelids for a few seconds and then wake up. Over and over. This is how I started coping with church. Don't fall asleep, Sunny Jane, just close those eyelids for a few seconds and then force them back open. I asked God to help me with this because it was obviously a spiritual issue and I was beginning to dread church. Where had the real me gone? I love church! But I had apparently let myself get to a point of spiritual deprivation and I really needed help with that.
And another thing that I had really let go: my work ethic. I've always been a hard worker, but now I was just straight up lazy. Some days I couldn't even make myself get out of bed. And other days, I'd get to work, work for 30 minutes, and then be done for the day. Just couldn't get my dumb, lazy self to move anymore. I was getting behind with my work and it was because I was lazy. I asked God to help me with this along with the dreading and sleeping during church thing.
And then, on top of that, I went from a people person (an introverted people person to be sure, but still a people lover), to this weird anti social person. I mean, parties have always been the bane of my existence, but this was different. Any interaction with other people would put me under for days. I'd be sick with exhaustion. Now I was just another one of those people haters, and would no doubt start posting stuff on FB about how much I hate people and small talk. Oh God, help me not to be that kind of person.
And where in the world was God? I was asking for help, and He wasn't lifting a finger. I didn't know at the time that He was helping me get to an answer, it was just a different answer than what I was expecting. If anything, I've learned that I often look in the wrong direction for the wrong answer, and God is just like, "Hello, no go this way... got a different answer for you about this".
So I continued to seek spiritual answers that weren't there, and I fought sleep and was sick as a result with migraines and flu like symptoms every time. I reasoned with myself that the constant migraines and flu/stomach bug symptoms were because I must have allergies. Maybe gluten free was my answer! Either way, I should definitely get a grip on myself, and stop being a lazy wimp and a stinking spiritual reprobate.
Around 2-3 years ago, I woke up from a movie at the Hoover's house one evening, and got ready to head home. I remember Aaron asking me if I was awake. Yep, I nodded. Then I got in the drivers seat and went back to sleep.
Nothing new there. I had been doing this for years. Always at night, going home from a friend's house. It was just because I was so sleepy at night and everyone has this exact problem. I'd "wake up" at some point and head home. I mean, that must be what happened because I'd wake up for real the next morning safely home and in my own bed. No memory of how I got there. But again, totally normal and not even dangerous! I've never even fallen asleep at the wheel and caused a wreck. Sleep driving is something everyone has to deal with, right? Not right, but I didn't know that.
Aaron came out and found me sleeping in the car so he pulled me out, and told me I couldn't drive home. Then I argued with him and cried a bunch and walked up the street. I demanded to go home. So he drove me home, and made sure I got safely in the house. I have no memory of this.
After that, I stopped driving at night for the most part. I can still night drive on occasion, but I have to be careful and plan ahead for it with naps beforehand or an overnight bag in case I can't make it back home.
And that was the first time narcolepsy was brought up to me. Lisa Hoover's brother in law has sleep apnea and narcolepsy. So she mentioned that the day after Aaron drove me home.
"You know Uncle Mike has sleeping disorders... I really think you have narcolepsy."
"No I don't! I don't fall asleep like Mr. Bean in Rat Race..."
"Neither does Uncle Mike. You need to get checked out."
I shrugged it off, but she mentioned it to me a few more times. Whatev! I'd continue to be a stupid fart head and do this my own miserable way, that's what.
One day, I was at the Post Office and needed to sign for a package. I couldn't. What was my name? My name was Sunny Jane... right? Yes it was. Okay... how did I write that? How was it spelled? Maybe if I could get to my drivers license, that would prompt my memory. Too bad I didn't know how to extract my license out of my purse. So I walked out, and sat in my car crying. Then I figured I might as well go home. Home was just two blocks away. But how did I get there? I panicked and went to the grocery store instead. For some reason, I could remember how to get there. And once I got there, I could remember how to get home. There was that one street that I recognized. I could get home from there. This scared me, but once the disorientation passed, I shrugged it off. Everyone gets confused sometimes. Brain fog is a real thing that all of my mom friends talk about.
One day, I walked into my kitchen for a cup of coffee. Once I got in there I realized I was in my neighbor's house. Oh snap. My legs and arms both did that jello thing in a panic. How did I wander into my neighbor's kitchen without realizing? I barely knew her! Also, why did my neighbor have a picture of Aaron and I on her fridge? How funny... she had the same dish towel that Rachel bought me for Christmas too. Wow, she had a lot of the same things I had. Wait a minute, this was actually my kitchen after all. How did I not know that? How did I not recognize my own kitchen? Well at least I wasn't at my neighbors because that would be embarrassing. I drank my coffee and went to work.
This type of total disorientation happened more and more. Usually just lasting for a few seconds or minutes. I wondered if I had super early onset Alzheimer's. Several of my relatives had had that so maybe I did too. Also, I've been a total airheaded ditz since childhood. So I must be slower than other people. Mentally, I mean. Pretty obvious since I couldn't keep up in college and had to drop out. And when I worked in a customer service office, I could never keep up with everyone else's quotas. They could do so much more than I could no matter how hard I tried. Thank God for my super slow paced job now. So flexible and much easier on me and my slow thinking. So this is probably to be expected. This is how I reasoned it out and tried to make sense of it. Narcolepsy was still off my radar. I didn't even look into it.
Sometimes, I just zone out. I'm there, my eyes are open, I'm moving around and getting things done, but I've totally checked out. I'm asleep. Like driving myself home while sleeping. I'm doing stuff, but I won't remember it, and if you talk to me, it's doubtful I'll make much sense.
Often when I first wake up, I can't move at all. This usually only lasts for a few seconds, sometimes a minute or so.
One night I heard someone break into my house. They were playing with my computer. I could hear the Windows chime. I was so mad. Punks! I crept downstairs, and then realized I had zero ways to defend myself and I weigh, like, 95 lbs. So I thought, "You want me? COME GET ME!" And then I went back to bed after locking my bedroom door. Freaks! Take my stuff then! And apparently they didn't want me cause they didn't come get me. So I went to sleep almost instantly. The next day I realized no one had been there, and my laptop was off and closed so no way I heard the Windows chime turning on.
I started hearing a man yell at me as I fell asleep. It was exasperating. I seriously just wanted to sleep, and he'd wake me up every single time I'd start to doze off. I hated him even though I knew he was just a dream.
I'd hear people banging on my door or the sides of my house. I'd get up and check, but no one was ever there. And my boss's dog would never bark anytime she was staying at my house. She barks at everything. So I started to realize it wasn't real. I had weird hearing anyway. The ear/nose/throat Dr recently said I probably have Auitory Processing Disorder because my hearing itself is fine. So my ears were just playing tricks on me all these years. Sometimes, I'd hear the doorbell or hear music playing. I learned to calm myself down almost immediately anytime it happened. I sleep with a box fan on high, my door shut and locked, and the dog is usually at my house. No way I'd be able to hear any of that over the fan, no way that man could get into my room without breaking down my door, and no way the dog would be silent if anything were actually happening.
Now I know that jello legs is called Cataplexy. The dark wave of irresistible daytime sleep is called Excessive Daytime Sleepiness (EDS). The ear tricks are auditory hallucinations. The disorientation is due to sleep deprivation. The little sleeps when I close my eyelids are called micro sleeps (micro sleeps can also happen when my eyes are open). Getting stuff done while I'm asleep is called automatic behaviors. Being unable to move upon waking is called sleep paralysis, something that we all experience when we dream, but shouldn't experience otherwise. These are all symptoms of narcolepsy.
I'm not super good at all of the medical terms and explanations. There's still so much that I don't know or understand. But I do know that narcolepsy is a neurological sleeping disorder, and our brains cannot regulate wakefulness/sleep cycles. REM (dreaming) sleep intrudes too often, and we miss most of the deep sleep that we need at night which causes sleep deprivation. REM also intrudes into wakefulness which causes issues like Cataplexy and sleep paralysis when awake. I'm including a link below if you'd like a better explanation than what I can give you.
One time, I stood in my friend Lizzie's kitchen and dropped my mug of freshly made coffee. Weird. The mug was slippery though so that must've been why. Or maybe it had something to do with that weird thing that happens every few days where I can't hold anything in my hands and my arms feel really weak... I don't know. I really should eat better!
Another time, I was holding a friend's baby at an outdoor birthday party, and suddenly found myself sitting on the ground. What the what? Did my hip, that sometimes has weird problems, just give out on me? That had to be it.
One Sunday morning, I stood singing for special music with the rest of our music group, and realized my knees were literally knocking together and I couldn't make them stop. What in the world? Was I nervous and just didn't realize it? I kept singing and focused on keeping my knees together. I was relieved that my knees made it back to my pew.
Anytime I laughed, my knees would melt. Like a square of butter on a frying pan. And sometimes that melting would spread to the rest of my legs until I couldn't stand anymore. Everyone probably did this! I laugh REALLY hard. Ask anyone! It was totally normal. I mean, I can literally make babies cry in terror when I laugh. I should really get control of that.
Jello legs. That's what I call it. Or jello arms. Jello hands. Jello neck. Jello face. Good grief, jello body. It happens anytime I laugh, get angry, am startled, try to lift anything too heavy, go for long, brisk walks, raking leaves, trying to swim, getting super overheated, or with extreme exhaustion.
Speaking of exhaustion, I have it. I found out recently that the level of sleep deprivation that a narcoleptic feels on a daily basis is comparable to a normal person going 48-72 hours without sleep. No wonder I was falling asleep constantly. One minute I'd be just fine, and then the next, I'd feel that hazy, fuzzy, excruciating darkness creep up on me pushing my eyelids down.
But, hey... I could fight it! I could close my eyelids for a few seconds and then wake up. Over and over. This is how I started coping with church. Don't fall asleep, Sunny Jane, just close those eyelids for a few seconds and then force them back open. I asked God to help me with this because it was obviously a spiritual issue and I was beginning to dread church. Where had the real me gone? I love church! But I had apparently let myself get to a point of spiritual deprivation and I really needed help with that.
And another thing that I had really let go: my work ethic. I've always been a hard worker, but now I was just straight up lazy. Some days I couldn't even make myself get out of bed. And other days, I'd get to work, work for 30 minutes, and then be done for the day. Just couldn't get my dumb, lazy self to move anymore. I was getting behind with my work and it was because I was lazy. I asked God to help me with this along with the dreading and sleeping during church thing.
And then, on top of that, I went from a people person (an introverted people person to be sure, but still a people lover), to this weird anti social person. I mean, parties have always been the bane of my existence, but this was different. Any interaction with other people would put me under for days. I'd be sick with exhaustion. Now I was just another one of those people haters, and would no doubt start posting stuff on FB about how much I hate people and small talk. Oh God, help me not to be that kind of person.
And where in the world was God? I was asking for help, and He wasn't lifting a finger. I didn't know at the time that He was helping me get to an answer, it was just a different answer than what I was expecting. If anything, I've learned that I often look in the wrong direction for the wrong answer, and God is just like, "Hello, no go this way... got a different answer for you about this".
So I continued to seek spiritual answers that weren't there, and I fought sleep and was sick as a result with migraines and flu like symptoms every time. I reasoned with myself that the constant migraines and flu/stomach bug symptoms were because I must have allergies. Maybe gluten free was my answer! Either way, I should definitely get a grip on myself, and stop being a lazy wimp and a stinking spiritual reprobate.
Around 2-3 years ago, I woke up from a movie at the Hoover's house one evening, and got ready to head home. I remember Aaron asking me if I was awake. Yep, I nodded. Then I got in the drivers seat and went back to sleep.
Nothing new there. I had been doing this for years. Always at night, going home from a friend's house. It was just because I was so sleepy at night and everyone has this exact problem. I'd "wake up" at some point and head home. I mean, that must be what happened because I'd wake up for real the next morning safely home and in my own bed. No memory of how I got there. But again, totally normal and not even dangerous! I've never even fallen asleep at the wheel and caused a wreck. Sleep driving is something everyone has to deal with, right? Not right, but I didn't know that.
Aaron came out and found me sleeping in the car so he pulled me out, and told me I couldn't drive home. Then I argued with him and cried a bunch and walked up the street. I demanded to go home. So he drove me home, and made sure I got safely in the house. I have no memory of this.
After that, I stopped driving at night for the most part. I can still night drive on occasion, but I have to be careful and plan ahead for it with naps beforehand or an overnight bag in case I can't make it back home.
And that was the first time narcolepsy was brought up to me. Lisa Hoover's brother in law has sleep apnea and narcolepsy. So she mentioned that the day after Aaron drove me home.
"You know Uncle Mike has sleeping disorders... I really think you have narcolepsy."
"No I don't! I don't fall asleep like Mr. Bean in Rat Race..."
"Neither does Uncle Mike. You need to get checked out."
I shrugged it off, but she mentioned it to me a few more times. Whatev! I'd continue to be a stupid fart head and do this my own miserable way, that's what.
One day, I was at the Post Office and needed to sign for a package. I couldn't. What was my name? My name was Sunny Jane... right? Yes it was. Okay... how did I write that? How was it spelled? Maybe if I could get to my drivers license, that would prompt my memory. Too bad I didn't know how to extract my license out of my purse. So I walked out, and sat in my car crying. Then I figured I might as well go home. Home was just two blocks away. But how did I get there? I panicked and went to the grocery store instead. For some reason, I could remember how to get there. And once I got there, I could remember how to get home. There was that one street that I recognized. I could get home from there. This scared me, but once the disorientation passed, I shrugged it off. Everyone gets confused sometimes. Brain fog is a real thing that all of my mom friends talk about.
One day, I walked into my kitchen for a cup of coffee. Once I got in there I realized I was in my neighbor's house. Oh snap. My legs and arms both did that jello thing in a panic. How did I wander into my neighbor's kitchen without realizing? I barely knew her! Also, why did my neighbor have a picture of Aaron and I on her fridge? How funny... she had the same dish towel that Rachel bought me for Christmas too. Wow, she had a lot of the same things I had. Wait a minute, this was actually my kitchen after all. How did I not know that? How did I not recognize my own kitchen? Well at least I wasn't at my neighbors because that would be embarrassing. I drank my coffee and went to work.
This type of total disorientation happened more and more. Usually just lasting for a few seconds or minutes. I wondered if I had super early onset Alzheimer's. Several of my relatives had had that so maybe I did too. Also, I've been a total airheaded ditz since childhood. So I must be slower than other people. Mentally, I mean. Pretty obvious since I couldn't keep up in college and had to drop out. And when I worked in a customer service office, I could never keep up with everyone else's quotas. They could do so much more than I could no matter how hard I tried. Thank God for my super slow paced job now. So flexible and much easier on me and my slow thinking. So this is probably to be expected. This is how I reasoned it out and tried to make sense of it. Narcolepsy was still off my radar. I didn't even look into it.
Sometimes, I just zone out. I'm there, my eyes are open, I'm moving around and getting things done, but I've totally checked out. I'm asleep. Like driving myself home while sleeping. I'm doing stuff, but I won't remember it, and if you talk to me, it's doubtful I'll make much sense.
Often when I first wake up, I can't move at all. This usually only lasts for a few seconds, sometimes a minute or so.
One night I heard someone break into my house. They were playing with my computer. I could hear the Windows chime. I was so mad. Punks! I crept downstairs, and then realized I had zero ways to defend myself and I weigh, like, 95 lbs. So I thought, "You want me? COME GET ME!" And then I went back to bed after locking my bedroom door. Freaks! Take my stuff then! And apparently they didn't want me cause they didn't come get me. So I went to sleep almost instantly. The next day I realized no one had been there, and my laptop was off and closed so no way I heard the Windows chime turning on.
I started hearing a man yell at me as I fell asleep. It was exasperating. I seriously just wanted to sleep, and he'd wake me up every single time I'd start to doze off. I hated him even though I knew he was just a dream.
I'd hear people banging on my door or the sides of my house. I'd get up and check, but no one was ever there. And my boss's dog would never bark anytime she was staying at my house. She barks at everything. So I started to realize it wasn't real. I had weird hearing anyway. The ear/nose/throat Dr recently said I probably have Auitory Processing Disorder because my hearing itself is fine. So my ears were just playing tricks on me all these years. Sometimes, I'd hear the doorbell or hear music playing. I learned to calm myself down almost immediately anytime it happened. I sleep with a box fan on high, my door shut and locked, and the dog is usually at my house. No way I'd be able to hear any of that over the fan, no way that man could get into my room without breaking down my door, and no way the dog would be silent if anything were actually happening.
Now I know that jello legs is called Cataplexy. The dark wave of irresistible daytime sleep is called Excessive Daytime Sleepiness (EDS). The ear tricks are auditory hallucinations. The disorientation is due to sleep deprivation. The little sleeps when I close my eyelids are called micro sleeps (micro sleeps can also happen when my eyes are open). Getting stuff done while I'm asleep is called automatic behaviors. Being unable to move upon waking is called sleep paralysis, something that we all experience when we dream, but shouldn't experience otherwise. These are all symptoms of narcolepsy.
I'm not super good at all of the medical terms and explanations. There's still so much that I don't know or understand. But I do know that narcolepsy is a neurological sleeping disorder, and our brains cannot regulate wakefulness/sleep cycles. REM (dreaming) sleep intrudes too often, and we miss most of the deep sleep that we need at night which causes sleep deprivation. REM also intrudes into wakefulness which causes issues like Cataplexy and sleep paralysis when awake. I'm including a link below if you'd like a better explanation than what I can give you.
https://nicer.ngo/what-narcolepsy/
Last spring, I spoke with my employer about making me a full time employee on his payroll. I was an independent contractor at the time and it was a financial burden for me. I was put on payroll that week with the most amazing medical benefits that I've ever experienced. I was embarrassed at the time, but so grateful that my boss has always been so kind and generous with me. I had no idea how much I was going to need those medical benefits later in the year.
That fall, Uncle Mike, came up from AZ for our Grandma's memorial service. Lisa had Uncle Mike sit down and talk with me about narcolepsy. I realized I'd be incredibly foolish to not go see a doctor.
A month later, I saw the new (and so amazing!) doctor that I had access to with my job's benefits. She referred me to a sleep specialist, Dr Coats. That was in November 2016. By February 10, 2017, I was diagnosed with Narcolepsy with Cataplexy. I've had it since childhood, but symptoms worsened over the past few years. A week later I started a medication that was supposed to keep me awake during the day. That was the most horrible 16 days of my life health wise. I was nearly completely bed/house ridden. After another appointment with Dr. Coats, we agreed that medication was not for me, and I start a new medication next week.
I realize this is the longest post ever, but I have a bit more to say so maybe go make yourself a cup of coffee if you haven't already. First, I need to make clear that this diagnosis has been an adjustment, but not at all devastating. I am not sad, I'm just super relieved to know what was going on. My mind has been completely blown piecing all of this together. So nothing but gratefulness here. Also, I joined a support group on FB for narcolepsy. What a great group. Reading other people's experiences has been so incredible for me. But one thing that truly distresses me is reading story after story of people who have horrible doctors, friends, and family members. They get mocked, brushed aside, and made to feel guilty over the way narcolepsy makes them feel. It's so hard for me to understand how anyone can be that way towards another person who is suffering from illness.
I haven't experienced this in the least and I cannot even begin to express how thankful that makes me. My employer is very understanding and accommodating. I have no fear of being fired like many people do. My family and friends have been amazing. They'll be the first to tell me to go nap or to take it easy. I know I can call them for help at anytime. My church has also been supportive and I know they're all praying for me and willing to help me. Both of my doctors are incredible, and I haven't had any issues at all with my insurance. I have Uncle Mike to call or text for advice at any time. I have my BFF Rachel who researches with me and brings me books from the library where she works. I have Aaron who had to experience me collapsing in Costco the other week, and he totally took care of me and sat on the Costco floor with me for 15 min and then practically carried me out to the car. Karen who took care of some of my responsibilities at church. Tim who finished some work things for me. Lisa who wants me to come stay for a few days when I start my new meds just in case, and joined my support group just to understand better. Russell who came when I called the one night when I wasn't sure whether I needed to go to the ER or what, and who went with me to speak with Dr. Coats about a new medication. I have been helped and supported at every.single.turn. This is what everyone needs, sick or not. Everyone needs that kind of love and support. My people teach me the kind of person I need to be.
And lastly, some people in my Narcolepsy group posted these yesterday and I have been DYING laughing.
Is there anything better than a meme? I would say no.
So when I was wondering where God was the last couple years, He was right there. Answering every question and cry I had with an answer that I wasn't looking for at all.