Secret agent.

Narcolepsy is like a covert agent… a skilled one… like Jason Bourne skilled. As a matter of fact, for me narcolepsy was so skilled that it would launch sneak attacks at the most inopportune times, and I’d never see it coming!

Once I drove a quarter of a mile, eyes wide open, and couldn’t remember driving that quarter of a mile when I came to. Another time, I drove for nearly 20 minutes and couldn’t remember any of the trip except for leaving and arriving. Then there were the sleep attacks while traveling 70 miles per hour. Not the recommended way to get your adrenaline rush! Sometimes narcolepsy would drug my coffee at work; it’d get so bad that all I could do was stare at the computer screen, trying desperately to keep two cogent thoughts in my head while my mind was trying equally as desperately to take a vacation.

Narcolepsy, in true covert agent fashion, not only deceived the target, but others as well. How else would it avoid having its cover blown? The evidence? “Oh, you should get more sleep;” “If you don’t drink so much coffee, you’ll sleep better.” Yeah, tried that and things didn’t go so well. “You should exercise more.” I would… if I had the energy.

I started to ask myself, “Why are my dreams so vivid?” and “Why is lucid dreaming so easy for me?” For years, I’d been complaining about chronic fatigue — sounds way more clinical than “being tired all the time,” right? It wasn’t until I was seen by a FNP (family nurse practitioner) who actually stuck with me long enough to suggest a sleep study that things turned around. I had the sleep study done. Lemme tell ya, trying to sleep with electrodes and wires is not an easy task! Once the results came in, Agent Narcolepsy’s cover was officially blown. Like Michael Westen, but without the sharp threads.

Turns out, I was diagnosed later than many (mid-30’s), but that was fine because I finally had answers, I had the truth, and I could handle the truth! Medication has helped, but I know there’s no shaking this burned spy. Rather, I accept the new norm — I live with a (former) covert agent that makes life challenging… but I’m still the better dresser!

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Thinkstock photo by Gazometr.



By: Sharon Castellano Torledsky

Most of my long-term friends and family still think of me the way I was before narcolepsy. I had so much energy and didn’t require a lot of sleep. I would go, go, go. I was like a hurricane.

I have dyslexia, but graduated from Florida State University in Tallahassee and was offered one of the top internships. I had a great job. I got married and had twins, a boy and a girl who are 23 now and attend Florida State. I was able to do it all – raise children and have a career.

But in 1996, when my children were 3 years old, I got pneumonia and something strange happened. I was so tired, and though I’d always been quick to fall asleep, now I couldn’t. I’d go to the couch, and then I would feel paralyzed – conscious, but I couldn’t wake up. I would hear someone break into the house, but I couldn’t talk or move. It was so scary. My whole body was shaking. In reality, no one was there, and I know now this is called sleep paralysis.

But when I went to the doctor, I was told that I was allergic to shrimp, and that was the reason I had these strange feelings. It kept getting worse. And now I was terrified of eating in restaurants for fear that I would eat shellfish. I dreaded trying to sleep.

For about two decades these things went on. Doctors couldn’t figure it out. It impacted my relationships – I got divorced. And it started to impact my work. In 2004, I moved to Tampa with my twins. I made a routine appointment with a pulmonologist to get my shrimp allergy medicine. But hearing my symptoms, the doctor wanted me to get a sleep study. I got angry because it seemed irrelevant – I had an allergy – and like a waste of time when I was so busy with my job and kids.

So I left and went back to ignoring my symptoms. I was in my late 40s and doing property management, which I loved doing. In 2006 our young marketing assistant approached me cautiously and said, “Sharon, I think you say some things that sound like you should go get a sleep study.”

My partner, John, who I met in 2007, could also tell my sleep was not normal and encouraged me to go to the doctor. So I scheduled a sleep study. But I didn’t try to understand why I was having a sleep study done. I believed it was a waste of my time.

John wanted to come along for the follow-up appointment. The doctor read the report and said, “Well, you definitely have narcolepsy and fibromyalgia.” I literally couldn’t hear anything after that. I was so glad John was there.

I started on a medication and people at work could tell that there was something different about me. I still wasn’t slowing down enough to digest anything the doctor had said. But I had more energy. I was focused. I felt better. I was bringing in close to $4 million in leases. I was at the top of my career. And I was raising twins by myself.

But by the time they graduated in 2011, I was so exhausted. My body was slowing down. I could barely walk, and my job required a lot of walking around properties. One or two days a week I just couldn’t get out of bed, but it was a huge, huge company and I was able to keep the numbers coming in. Yet my memory was very noticeably bad, and it started getting worse. My coworkers knew something was up. In 2013, our human resources department got involved and they said, “Sharon, we want you to take a 12-week leave of absence to take care of your health.”

I felt so alone. They didn’t know I had narcolepsy. I wasn’t accepting it, I think. I also – and this is huge – I had never met another person that had narcolepsy. The only thing I had known about narcolepsy was a shared joke at work about someone who fell asleep a lot. My process of awareness and acceptance just moved really slowly.

After the medical leave, doctors were saying, “You need more time.” But I still didn’t have a full understanding of what I was dealing with. In fact, I was such a bad patient that my doctor kicked me out of his office. I went back to my primary doctor, forgetting I had been there in 2004 and refused his recommended sleep study. So in 2014, he did the sleep study, and I was diagnosed with narcolepsy a second time. The doctor told me I needed to have my kids tested because narcolepsy can have a genetic link. At that point I was willing to do what he said.

But around then John was offered a job in Atlanta and we moved. Great information has happened to me since I’ve lived in Atlanta, including that I was able to have genetic testing done. I do not carry the genetic marker for narcolepsy.

I didn’t properly understand my narcolepsy diagnosis until I went to a support group in Atlanta, which has been just incredible. My family didn’t understand because I didn’t understand. Finally, over the last year I have had the information to properly educate them. Some of my family and friends understand and welcome the information I give them. Some do not understand, or even want to understand. I have enough support and understanding around me that if someone doesn’t want to know about it, that’s fine.

I also found myself going down the road of filing for disability, even though I didn’t want to. With narcolepsy, you look OK – and people wonder how you can be on disability. Some told me I should not be. It has been hurtful, but everything that happens teaches me more.

Every stage of this has been a learning experience. I’ve learned to listen to doctors. I’ve learned to advocate for and educate myself. I’ve learned that I have to take care of myself and stick to a very routine schedule or I won’t be able to function.

I have learned the spoon theory, which uses spoons to represent the finite amount of energy that people with chronic illness have daily. It is the coolest thing to grab a bunch of teaspoons and show someone: These are my spoons. They always say they love it.

Narcolepsy has also taught me that there are good relationships and bad relationships. And that’s true with your family, friends and – the one that really threw me for a loop – doctors.

Everyone has experienced a night where they don’t sleep well and the next day is miserable. My everyday feeling is like I haven’t slept for three days. But that’s not something you can really see. I may look OK, thanks to great under-eye cover up that I wear every day. But narcolepsy is one of the very many invisible conditions.

People often don’t know that narcolepsy is a chronic, lifelong, disrupting, neurological disorder. The brain is not able to regulate your sleep-wake cycle normally. So I want people to know those things. People ask me, “Are you feeling better?” That’s not what narcolepsy is. It’s really best to say, “How are you doing today?”

One great tool in helping someone understand, along with grabbing a set of spoons, is writing the word “chess” to explain the possible symptoms of narcolepsy – which everyone experiences differently:

“C” is for cataplexy.
“H” is for hallucination, or very vivid dreams.
“E” is for excessive daytime sleepiness.
“S” is for sleep paralysis.
The other “S” is sleep disruption.

I have everything but the cataplexy.

I’m one of the older people in my narcolepsy support group. I see all these young people in their early 20s. I’m seeing a lot people whose children have it. I think they’re being diagnosed earlier – which I believe means they can have an exciting, full life. My advice for them is to embrace the accommodations schools offer. Don’t be embarrassed to say what you need. And when you start working, you don’t have to tell employers that you’ve got narcolepsy, but know what accommodations you are entitled to should you need them. Even in picking a career, think about something that you can sustain long-term.

Whatever type of narcolepsy you have, a set schedule is essential. Even so, you’ll have bad days. As soon as I think, “Oh, I’ve got this – I’ve been doing this for a long time,” that’s just when something new hits or symptoms worsen and I have to go back to the basics: narcolepsy 101. I focus on my schedule and cut out extra activities. I’m careful with my medication, and I hope and pray I can wake up and get out of bed. I learn from my mistakes.

Researchers are studying narcolepsy and making progress. The information about narcolepsy was so limited when I first experienced symptoms. I’m only now fully appreciating what narcolepsy is and I’m 56. (Two years ago I took a blood test that showed I do not have a shrimp allergy. I am finally eating seafood again.)

I’ve been on disability for a year and it’s hard. I want to work. But I realized that getting up and going to work 40 or even 20 hours a week is not really possible. I don’t know what’s next. I had a wise doctor tell me that the loss of work and the loss of a loved one is the same type of grieving and I’m here to tell you, I absolutely grieve my career. I have my faith, and look forward to whatever the next journey is because I know it will be great. One day the fog will lift and we’ll know why things happened the way they did. I really believe that.

I am so blessed to be in a loving relationship with someone who understands. John has been here through this whole journey. I’m just so fortunate to have him and my twins.

This post originally appeared on Caring Voice Coalition.

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Today I woke up and I was tired.

Beyond tired actually.

I woke up feeling a level of exhaustion most people don’t feel in an entire year.

But today I woke up anyway.

I got out of bed just like every other Monday.

I got up and walked on over to my UV light to shake away the effects of narcolepsy.

I forced myself to take my supplements in the morning despite wanting to go straight back to bed.

And today I’m heading straight to the gym, yet again, to start my day.

I’m still tired while writing this.

But that will never change, and I’ve come to accept that.

Today I woke up tired, and I pledged to give it my all.

I pledge to myself and the ones I love that this disease will not get the best of me.

Because not long ago I wanted to give up. Because I feel everyone else without this disease will never fully understand our struggle. Because not too long ago I felt like I would never find my drive again. Because not too long ago this disease made me consider ending my life.

But not today.

Because today I woke up tired, and I pledged to give it my all.

Life is too short to let this disease run my life.

Today I will give it my all.

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255 or text “START” to 741-741.

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It starts the same way every time. You tell your boss that you will have to come in a little late on Monday. They ask you why. You say you have a doctor’s appointment. They say that the meeting you will miss is very important, and ask why you can’t just reschedule it.

First things first. The fact that any employer thinks that whatever first world crisis they have created for themselves by not planning ahead, not following through on deliverables, or frankly just not doing their job should trump any health-related situation is ludicrous. Since when is taking care of yourself or your family members in any way less important than getting a product shipped 24 hours sooner?

Second, when did they become medical professionals who can tell whether or not your appointment is important?

Third, I thought it was an HR violation to ask about your medical status in any shape or form.

It is really none of your boss’ or your co-workers’ business what you need to do to maintain your health. Here is why I personally need to attend my doctor’s appointment.

I have narcolepsy. I have to jump through a million hoops to even get the medication I need in the first place. If I do not attend regularly-scheduled appointments, I do not get my medications. Why is that important? I have an illness that affects my ability to have restful sleep and my ability to regulate my metabolism. If I don’t sleep, I am a zombie. I am not effective at work. I start to lose my short-term and long-term memory. My ability to drive safely continues to be compromised the longer I am not on medication. I am so tired that I go to my car at lunch and take a nap. I am so tired that I physically throw up from lack of restful sleep. I start to have auditory hallucinations and vivid and scary dreams.  I start to become irritable and angry at everyone around me.

It is really in all of our best interests that I continue to maintain the regulation of my illness. I am more productive at work if I am effectively medicated. I am not a danger on the roads if I am effectively medicated. I am a productive member of the workforce and my home if I am effectively medicated.

I don’t ask you about your high blood pressure. I don’t ask you about your weight. I don’t ask you if you have sick kids or if you are eating your vegetables or taking your vitamins. You may not care about your health, and may assume I don’t care about mine. However, I do care. I care about being around to take care of my four children. I care about being able to drive a car and not injuring someone from falling asleep at the wheel. I care about not throwing up every few hours from exhaustion. Call me selfish if you want, but I think I’m being very reasonable.

At the end of the day, I just need you to recognize that I make a significant contribution to the workforce and my family. I do not abuse the privilege of having to take an hour off twice a year to extend the usefulness I can provide to the workforce and my family. So, please don’t ask me to chose between providing for my family and staying alive and productive for my family. You don’t have that right.

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Parents are always tired, right? We are constantly walking around on the brink of sleep deprivation, especially when babies are young. If there is something mothers can bond over, it is their constant lack of sleep and wondering when their babies will finally sleep through the night.

So much about parenting, motherhood and raising kids revolves around sleep or the lack thereof. Parents live for and dream of sleep.

Imagine constantly feeling like you have gone without sleep for 48 hours. Your body aches in a futile attempt to get you to slow down. Your brain is in a chronic fog, and it’s hard to complete thoughts, much less sentences when you speak. Your mind seems to be operating in slow motion.

The restful sleep you so long for eludes you. Once you lay your head on the pillow, your mind starts to race, or sound bites from earlier in the day play in a constant loop. It can be a song lyric, a technical term, fancy words or simply someone’s name playing on repeat.

Finally, you fall asleep, but now the dreams… or are you still awake? The line between asleep and awake is blurred – and very subjective. There is no such thing as “sweet dreams” in your vocabulary. There are hallucinations and nightmares, on a good night.

That’s a brief description of what it feels like to have narcolepsy.

Parenting with a chronic condition is no easy task. As a parent with narcolepsy, I am constantly balancing taking care of myself and caring for others, and rarely have enough energy and time to do both. Most days, running out of “spoons” is unavoidable. Other times, I may have a streak of several good hours or days, maybe even decent weeks.

But even with all that said, I will go out on a limb and claim that narcolepsy has made me a better parent than I might be otherwise. Being raised by a parent with narcolepsy is teaching our four boys a number of things they otherwise wouldn’t understand, and for that I am thankful. Yes, I said it – I am thankful for my narcolepsy. Here are four reasons why I feel it makes me a better parent:

1. We don’t over-schedule our kids. Yes, it would be a logistical nightmare to balance four boys with 2 or 3 extra curricular activities. The mere thought of it makes me yawn. We try to have no more than one or two things on the schedule on any given day. Slowing down and spending more time at home than most families has created a bond between the boys like no other. They also know how to play with their toys and entertain themselves.

2. Our kids show empathy every day. The boys know I have narcolepsy with cataplexy and they understand what that means in my particular case. For example, there is something oh so tiring about reading to the kids. Some days I just doze off for a few seconds; other days I take a quick power nap. When I wake up, I know I will have a pillow shoved under my head and a blanket draped over me – and a little boy patiently holding his book, waiting for me so we can continue reading.

3. The boys are learning responsibility. There are days where I have enough energy to do homework, cook dinner and clean up afterward, but on other days I need an extra hand with setting the table or doing the dishes. The kids know to offer their help without me having to chase them down. They understand that they can’t always tell by looking at me if I am having a good day or a sleepy day.

4. We are raising four resilient boys. The kids know what to do in case I experience cataplexy while we are out in public. They know how to reach my husband on my cell phone and who they should ask for help. Our instructions to them are simple: “Keep your brothers close and safe. Direct first responders to look at my medical alert bracelet. Call Dada.”

Practicing the drill, explaining cataplexy and teaching them how to react was one of the hardest things I have had to do due to my narcolepsy. But we couldn’t afford to sugar-coat things or have them not understand exactly what was happening. They take great pride in always making sure I am doing well. They know that we as parents will always care for and protect them. But they have also learned we are only human – and in a family, we all have to protect and care for each other.

I am the first to admit that parenting with narcolepsy has its challenges. But with lots of love, empathy, patience and a good healthy sense of humor it is possible to find the good in narcolepsy. My recipe for successful parenting with narcolepsy is to take life one nap at a time.

Have you ever heard of cataplexy?

I know I hadn’t heard of cataplexy before I started researching narcolepsy and other possible diagnoses two years ago, but I’m going to be ambitious here and try to make it easier to understand.

I think most official definitions include something like this: Cataplexy is a sudden loss of muscle tone or control associated with narcolepsy, usually triggered by an emotional response and lasting a few seconds up to several minutes. It can affect as little as your eyelids or as much as your whole body.

That’s pretty accurate if you’ve ever observed it. But when you’re the one with cataplexy, it’s a different experience.

Cataplexy feels like you’re a tree that only gets two seasons — summer and winter — and you never know how long each will last. You’re constantly being stripped down to your bare bones, and you’re then expected to hop back into life as if nothing happened. You know all your leaves, all the branches they grow from and where new ones are starting. Your roots are strong, so you know you can handle not having a spring and fall, but someone’s constantly switching between the winter and summer, and you can’t keep up.

In the summer, your branches dance in the breeze, and you always have birds and squirrels flitting through the cool canopy you provide for them. And then suddenly, it’s winter, and you watch all of your precious leaves slowly fall to the ground — all the pieces that make you you  scattered all around with only your core left.

You can’t do anything about it, and you know you’re not moving anywhere, so you patiently wait for spring. Surprise! Summer again! All you can do is try to grow your leaves back as fast as possible, try to remember what you looked like and what animals visited you and if you need more branches in a certain place and try to enjoy the warmth and green while it lasts because winter will soon return. You know that.

That’s what it’s like for me, anyway. I feel the familiar fog roll into my head and know I’m going to have to give cataplexy its time sooner or later, but I’m fortunate in that while I don’t have a choice in “if” it happens, I generally do have a choice in “when.”

When I was walking on campus, I could focus on counting my steps, and I’d magically find myself back in my room. Granted, if I’m fighting it for an extended time, I may literally just collapse when I give in, and historically, that has caused my temporary paralysis to last longer — like for hours at a time.

With cataplexy, there’s so much to describe while outwardly nothing is happening. Usually, I can still talk to people around me, though my voice may be dull and flat. Otherwise, I’m still. You can lift my arms, drop my feet, poke my belly or prop me up (and support me, please), and I’ll be dead weight. I’m at the mercy of whoever is with me (which is rare because I’d much rather be alone to deal with this awkward predicament) until I slowly gain control of my fingers, then my hands, my neck, forearms, then my trunk and shoulders and eventually my legs. Sometimes my legs come back first. Sometimes it’s only my legs are affected by the ‘plexy (saying this affectionately, sort of). Or, occasionally, it’s just been my hands, usually at a time when I needed to type.

During this time, I rarely feel emotion. I’m just there, neither sad or mad, but never happy or content. It’s a complete lack of feeling and thinking. I can’t tell you how many times last fall I had a cataplexy attack in my (thankfully single) dorm room, and I would be lying on the ground just thinking about my breathing. In and out. In and out. I forget about tests, running, friends and student loans. I forget I’m funny, artistic, currently stressed, but might vaguely remember I have somewhere to be at 6:15 that evening. I’m just stripped down to my motionless body and my immediate surroundings.

Sometimes I’d think about the carpet or my fingers in front of me, my dresser or desk or the sunlight falling in. Sounds positively thrilling, eh? But I’m in forced checkout almost the entire time; I know it will eventually pass (whether it’s minutes or an hour later) and I’ll be able unfold my limbs, and I’ll be thankful for all my parts and the ability to move them (most of the time) as the fog recedes.

Life with cataplexy isn’t easy, but in the moment, it’s also not hard. It forces you to avoid your problems or unpleasant emotions, instead of dealing with them, which is kind of nice at the time — although last I checked, this strategy works for just about no one long-term.

Leading up to and putting off cataplexy? That, I think, is hard, and I wouldn’t wish it on anyone. I’m thankful my cataplexy has gone down considerably in the past couple months with some lifestyle changes, a forced “life break,” as well as multiple medications. Sometimes, I’m still caught off guard when my tree is suddenly surrounded by winter, but I think it’s gotten at least a little more predictable, and I’m not going back and forth multiple times in one day.

Cataplexy is weird, but it is what it is, and if one person can read this and feel at least an inkling of being understood, then thank you. Because that means someone understands me, if just a little, too.

Follow this journey on Rec. Sleep. Ride.

Lead photo source: Thinkstock Images

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