Dodging A Diagnosis

I gave up.

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.

Diagnosis Disaster - Part One

"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."

AHHHHHHH!!!!!!!!!!!

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.