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.