Diagnosed with Narcolepsy in September 2011. I have yet to meet another Narcoleptic in person. Having a rare disease can make you feel very alone with no one who can relate to your challenges.
I eventually found other people with Narcolepsy (PWN) online.
It was such a relief to find others and get practical information about living with Narcolepsy. I wanted to contribute to the community as well.
I hope to spread awareness to non-PWNs and share encouragement with my fellow PWNs.
So if I had met my work mates at the pub tonight and was sharing stories from the day, this is the story I'd share:
Today my Narcolepsy was particularly bad and I was having more hallucinations than usual. Mostly either hearing or 'seeing' people walk up behind me. But when I turn to see what they want, of course, they're not there.
This was happening all afternoon and I was getting pretty tired of it (pun intended wink emoticon ). Toward the end of the day it happened again. So I just ignored it and kept working...until she bent down right next to my face and said, "Excuse me." Oops!!!!!!!!!!
I re-started my search for a diagnosis with my OBGYN.
That makes sense right? But here's my reasoning. I had been with my OBGYN for years. I respected her deeply. I didn't want to waste a bunch of time going from doctor to doctor. I wanted to find who the 'good ones' were.
So I told her I was looking for a new GP and wanted to know who she thought were the stronger physicians in the area. Come to find out, they aren't allowed to make recommendations. Rather, she said she could give me a listing of the local physicians and I can go from there.
Fine. I took the sheet home. I discovered there were stars next to some physicians' names and some names were crossed off. Hhhhmmm........
So I called around asking if the doctors were taking new patients and after several offices telling me 'no', I found one!
At my first appointment I was hopeful this would be the only doctor I'd have to go to. But in the back of my mind, I was worried it may be more of the same.
"So, you're tired or fatigued?" the doctored asked me.
What? No sleeping pill prescription? He's not brushing me off? He's......asking questions?? Wow. This is new!
"What's the difference between tired and fatigued?" I asked.
He explained that 'tired' means I feel like I need to sleep and fatigue meant weak like you are out of energy. I understood that. Fatigued is like the last 5 miles of a marathon, tired is an hour after you finish.
"I'm tired all the time," I said. "Here's my blood tests from the last few years. We found I have Hypothyroidism. But when my thyroid levels were brought back to normal ranges, it didn't fix the tiredness."
He nodded while looking over my blood tests. "You were tested for Epstein Barr?"
"Yes," I sighed. "My previous doctor wanted me tested for that. He said that I have Fibromyalgia because I tested positive for Epstein Barr."
The doctor looked up from my file with knitted brows. "Do you have any pain?"
"No. That's what confused me. I have no symptoms other than persistent tiredness. Plus, the majority of the population carries the Epstein Barr virus. So I don't understand how he got Fibromyalgia from that."
"Yeah," the doctor replied, "Epstein Barr is not used to diagnose Fibromyalgia. So describe your tiredness. Is it all the time or does it come and go?"
I replied, "I feel like I need to take a nap....like all the time. And when I sleep, I wake up and I don't feel better. In fact, some times I feel worse! Like sometimes I wake up with a headache. I can understand going to bed with a head ache. But you shouldn't wake up with a head ache, right?"
He nodded his head, "I agree. Have you ever gone to a sleep doctor?"
Sleep doctor? I've never heard of a sleep doctor.
"Well, you're having trouble with sleeping too much. Why not go to a sleep doctor? Waking up with a headache is a symptom of Sleep Apnea. Looking at you I wouldn't think you have Apnea. But let's have you tested to rule it out. If it's ruled out, we can then look for less common sleep issues and go from there. How does that sound?'
That sounded great! A sleep doctor? Who knew!!
I was so relieved I was being heard and relieved to find out there was more to explore. I was thankful I had a doctor who was willing to try something else. I felt like the doctor was a super hero... just for trying!
After decades of trying to find out why I was tired all the time, I told myself that's just how I am. I didn’t understand why I had to sleep so much, I just knew I did. My friends, coworkers and even strangers would say, “I’m always tired too!” But I noticed they weren’t falling asleep at parties or having to sleep 10 hours at night and still need 2 -3 hour naps during the day. I started thinking my tired was different. But I couldn’t explain why.
I cancel last minute on plans with friends because I was too tired to join them.
If I told my friends, “I’m sorry, I can’t make it to the get together tonight. I’m really tired.” They’d say, “Oh come on. We’re all tired from the week. It’s Friday. Come over and party!”
I would have to say I wasn’t feeling well (which was true) or I felt like I was coming down with something as that’s what I would assume was making me tired.
What they didn’t understand is that when I said, “I’m tired” it meant I was so tired it was hard to stay upright at a party and make conversation. That trying to maintain conversations can give me headaches. There were many times I’d have to leave early because I just couldn’t stay awake any more. I could be quite the party pooper.
As the years went on, my attacks of sleepiness occurred more often and I’d go through periods where the sleepiness was really intense for days. Though I didn’t notice this until one year when my parents came out to visit. And I spent more time sleeping than visiting with them. Their visits were the highlight of my year. The last thing I wanted to do was sleep through their visit!
But this year I noticed I couldn’t muster the energy to get out of their hotel room. I would drag my body up and around with them as much as I could. But the intense sleepiness I was fighting through made the outings a struggle rather than a joy.
My parents, as usual, said it was because I work so much and travel and keep myself so busy. Sounded right. Isn’t that the American way of life? I needed to slow down. So they let me sleep my way through their vacation.
I felt better for awhile, so I thought maybe I had ‘caught up’ on my sleep. But then shortly after my folks flew back home, it hit again! I had another several days in a row where all I could do is crawl my way to work, come home and lay down.
I noticed these bouts would come and go. They tended to last between 2 - 5 days. Then I would feel more ‘normal’ after that. Normal to me was just being tired all day with some periods of increased drowsiness. But it was much better than the crippling sleepiness of the ‘episodes’ as I started to call them. But the fact that I would lose several days at a time because of my sleepiness, I had to face the fact: this was not normal and my sleepiness was a problem. I needed to start looking for answers ....again.
"She complains of being tired all the time," my Dad was explaining to my allergy doctor.
I was in grade school and my dad had taken me to an allergist for a non-sleep related issue.
"Well, she's probably anemic. Does she eat a lot of meat?"
"No! I can't get her to eat any meat!...Except for McDonald hamburgers. She just won't eat meat."
This is my favorite part of this story. See I grew up in Iowa amid cow and pig farms. (I was a city girl of course. Well, actually a small town girl, but my point is I didn't grow up on a farm even though I was raised in Iowa).
Even though I was raised in "meat country" I never liked meat. I think it's funny I grew up to be a vegan. But that's another story. Back to the doctor....
"Well, have her eat green vegetables like spinach and peas."
Yeah doctor!!!! He didn't tell my Dad that I MUST eat meat, he gave vegan alternatives. Yeah!!! Even though 'Vegan' wasn't a thing back then.
My dad explained I didn't like spinach or peas. We were sent home with iron tablets.
I continued to complain of being tired. ....For years. Each time my parents mentioned my tiredness at various doctors visits over the years they got answers such as:
"She's probably going through a growing spurt."
"Teen agers stay up too late. Have her go to bed earlier."
"Teen agers don't keep regular schedules. Make sure she goes to bed the same time every night."
"Kids don't like to get up in the morning. She'll grow out of it."
When I left home and went to college the symptoms went with me. I had no idea I had a sleep disorder. I just thought that's how it was for me. So I tried to get through as best I could.
I had so much trouble studying as I couldn't seem to keep my focus. (Which I know now is another symptom of narcolepsy). So I started trying to find places where it was particularly quite and secluded to not be distracted so I could focus better. Of course, I know now, this was the OPPOSITE of what I needed to do. So after secluding myself in a quiet place to study, I started to fall asleep EVERY TIME I set down to study. (OMG! I can hear all you narcoleptics reading this laughing at my my mistake). But I know better now. I need to have movement and activity to stay alert. Which makes it really hard to study. But now I'm a master multi-tasker.
It was hard to get to morning classes on time. One class was particularly horrible as the professor would lock her classroom door at the time class was to start. So anyone who was late would be locked out. I barely passed the class as I never could wake up to get there on time.
Now days, a narcoleptic has a much better chance of getting the appropriate accommodations they need. But back in my day, not so much. Not that I had even heard of narcolepsy back then.
After college my well-being was solely in my hands. So when I went to various doctors appointments and mentioned how I sleep all the time and still feel tired, over the years I got answers such as:
"Oh, you want sleeping pills?"
"Oh, you're tired all the time? I can prescribe you sleeping pills."
"Here, I'll give you a script for sleeping pills."
"Oh, you want sleeping pills. Sure, I'll write you a prescription."
It was maddening! Why did they keep trying to give me sleeping pills when I had just told them I sleep too much and am still tired???? I lost my patience with one (sue me, I had been trying for years to get someone to help me and no one was even trying, try to stay friendly after that). I snapped at him, "Why would I want sleeping pills????! I just said I SLEEP ALL THE TIME!!!!!!!"
He looked taken aback. After a few seconds he said, "Maybe you're depressed. Maybe you should see a counselor."
So I gave up. For years, I stopped asking my doctors to help me. Until the symptoms got worse. But that's a story for the next post.
I ran my first marathon a little over three years ago. I was diagnosed with narcolepsy only a little over two years ago. If it wasn’t for narcolepsy, I probably wouldn’t have become a marathoner.
Very few people know about narcolepsy; including doctors. So when I asked doctors why I am tired all the time even though I sleep A LOT, I kept getting vague answers like:
You’re over stressed.
You may be depressed.
You’re too active.
You’re not active enough.
I was active. I was a long distance cyclist and picked up running to stay fit during the off season. But I did notice I’d do good with my workouts for the first part of the week but by Wednesday I could barely drag myself out the door, let alone get in a decent workout.
I thought it was just me not being enthusiastic about working out several days a week, or being over worked, or not having the will power. So, I thought, maybe if I could just be consistent with my workouts; if I could just stick to workouts three times a week, I wouldn’t be tired all the time. After all, you always hear that working out gives you energy.
But what would motivate me to stick to the plan no matter what? After some thought, I decided I needed to sign up for a marathon. Well, not just sign up for a marathon, but also join a team so I wouldn’t be able to drop out of training unnoticed. So I did. And it worked.
When you are staring down the barrel of a marathon race, you will not skip your workouts! So even later in the week I would drag myself out the door and run. So it worked to keep me more consistent with my workouts. And when I ran, I felt alert and ‘normal’ for an hour or so afterwards. So that was great!
But the everyday tiredness persisted. So while training for a marathon gave me temporary relief from the excessive sleepiness, my day to day symptoms were unchanged.
And I was still more than a year away from an accurate diagnosis.
I'll never forget my mom's words to me when I was still a grade-schooler. I had been complaining of being tired all the time. I think she may have just been annoyed with my frequent complaints or it might have been that she herself was always tired. She was a working mom after all. And maybe she just had the 'welcome to my world' attitude. But I took her literally. I thought that I was just a person who was always tired.
Also, when my mom would come to wake me up for school in the morning, it was incredibly hard for me to wake up. My mom would get so frustrated! We had a schedule to keep after all and she would come in to wake me up only to walk past my room five minutes later to find me back asleep.
"Get up!" she'd admonish as she pulled on my arm to get me out of bed.
"Mommy, my heads hurts."
"You're a kid. You don't get head aches. Now get up! You can't be late for school and your father and I have to get to work!"
Waking up with a heavy head happened every morning of my life and still does. I never knew anything different. My poor mom thought I was just lazy and didn't want to go to school. Besides, my dad was the same way. He was terrible waking up in the morning.
I remember him often running around the house in the morning trying to scramble to make it out the door on time because he often slept past his alarm. My mom probably thought I had just inherited my dad's "night owl" tendencies.
Through high school my trouble in the mornings continued and I too always scrambled to make it to school on time. Like father like daughter. I would always be doing my make up in first period because I could never get up early enough to do it at home before I had to leave for school.
I was a really good kid. But I was often in detention. But never for anything other than being late to first period. I wonder how many hours I spent in detention over the years. It had to be in the hundreds! The ironic thing is that detention occurred before school. How I made it to detention on time I don't remember. But I'm pretty sure I used the time to put on my makeup.
My last couple years in high school I was on the color guard and we practiced everyday before school. Every day I was late to practice. I tried everything to get out of the house on time. Going to bed early. Laying out my clothes the night before. Setting more than one alarm. Setting alarm clocks in other rooms so I’d have to physically get up and walk to them to turn them off. Have friends call me in the morning to wake me up.
But even with these tactics, I would still fail. I would sleep through the alarms or wake up late to find that I had gotten up, walked in the next room to turn the alarm off only to return to bed with no memory of getting up in the first place. It was maddening!
I did not want to sleep late everyday; trust me. It sucked!
One time in junior high, I had a friend sleep over. When I woke up in the morning my friend said, “Finally!”
“You’re finally awake. I’ve been awake for hours!" She then told me all the things she had tried to do to wake me up. None of which, of course worked.
I found out decades later, this is a symptom of Narcolepsy. Many people with narcolepsy (PWN) have a really hard time waking up. Some, like me, wake up feeling exhausted, head achy, heavy-headed, or (like on my worse days) sedated. Somedays I wake up and I feel like I’ve been shot with a heavy sedative. The extreme grogginess and foggy head takes hours to go away if not all day. Go to the doctor, get shot with a sedative and then go to work. Yeah, that's what it's like for me on the bad mornings.
Part of the problem with narcolepsy is that the brain is messed up on when to make you tired or alert. So while you fight like hell to stay awake during the day, you may have insomnia at night. Yeah. That’s fun. Spouses love it too! :)
Besides, having trouble waking up, I also fought most days to stay awake during the day. But that’s a story for the next post.
I'll leave you with this link to a really good article about Narcolepsy if you’d like more information on the disorder itself