Connecting the Dots

If you read my first post, you might remember this infographic I shared at the end. Well in the next few posts I want to talk a little more about that, and how it pertains to my own life. Basically you're going to get a rundown of what these statistics actually mean for me, and I'll tell you a little about my life, if you're curious. Also, if you're an educator that works with adolescents, I'm hoping to give you some information that might help if you're noticing certain problems with students being overly tired and falling asleep in your classroom. So try to bear in mind as you read this that I'm not writing all this so you feel pity or sympathy for me, I writing to hopefully help others understand. Especially if you are a PWN or have PWN in your own lives.

To start off this post, I'm going to talk about pre-diagnosis, because that's basically where it all begins, and in the next one, I'll go over actually doing the testing and my reaction and such when I started treatment. That average of 10 years on the infographic means that the onset if symptoms typically occurs a full decade before a person with Narcolepsy finally has a doctor say "This is what's wrong" and they can hopefully start getting treatment that actually works. I think it's safe to say that's ten very long, frustrating years without answers not just for people with Narcolepsy (PWN) but for those that live with and love them.

 Many people with Narcolepsy say they remember symptoms starting around puberty, though many have said they remember some in early childhood, or after a traumatic event or even a head injury or vaccine (this has only been shown to happen to those that got certain flu shots in Europe during a one or two year span). For me, it was probably a few years after puberty that I really remember noticing problems, but that doesn't mean they weren't there. I was an early bloomer and was almost a head taller than all but one other student in my entire school by fifth grade, so I hit puberty around 11 but really started noticing problems around 7th or 8th grade.

I did not get diagnosed with Narcolepsy until I was 27. That's almost 15 years between symptoms and diagnosis. 15 years during which I believed that I was literally one of the laziest people on the planet. 15 years of turmoil, of beating myself up, of overemotional meltdowns, of thinking I was a horrible friend, daughter, wife and mother. 15 years where I battled with depression and occasionally suicidal thoughts. 15 years of uncontrollable eating habits and sugar cravings. There were so many things, a lot of them that probably seem simple and even trivial to a lot of people, that I would torture myself about because I simply did not have the energy to accomplish them. Things like cooking and preparing healthy food, making my bed, brushing my teeth, playing with my kids, having a meaningful conversation, basic housecleaning, running errands. and the list just goes on and on.

Courtesy of everythingnarcolepsy.blogspot,com

When I was about 24 or 25 I had a neighbor suggest I talk to my doctor to see if I had ADD/ADHD because she could tell that something was not right, that it was difficult for me to stay focused on anything for very long. Sure enough, when I went to my doctor and I did all those evaluation questionnaires they use, I tested pretty high for ADD. I've also been diagnosed and treated for depression. I've wondered if I was bipolar, and my brother has wondered if he had Schizophrenia. If you read the first post, you know that hallucinations and Excessive Daytime Sleepiness can explain a lot of this. Schizophrenic hallucinations are different, though certainly no less frightening. Though he has it as well, he had never learned enough about Narcolepsy to realize it also came with hallucinations. (I'll probably get into the family dynamics and who has what diagnosis another day. It's too complicated to do that now.)

Found on CafePress

If you want to know more about how sleepiness/ sleep deprivation affects a person, check out this infographic and article from The Huffington Post or this one from Mic.com. I found the second one especially fascinating, as it explains the lack of focus, inattention, hallucinations and more from a neurological point of view, and I find brains incredibly interesting. And not just because I feel like a zombie most days.

found on thefunnybeaver.com

Of course, the medications I was prescribed didn't really work, not long term and certainly didn't address the real problem. I was still overemotional, irritable, impulsive, sometimes even delusional, and exhausted all the time. There were many conversations and events I could swear had actually happened, could even recount almost word for word and in perfect detail but no one else ever remembered them. I wondered if I was crazy. Like put me in an institution crazy. I would lose my temper at pretty inconsequential things and had no idea why. Twice I have broken a couple of my fingers because I got so mad that I punched the wall of our house and hit either a group of wooden supports or bricks. I still have no idea what I was mad about at the time but I do know it was something stupid. I'm sure you've all seen how irrational and inconsolable a two year old who missed their nap can be. That was me, but as a teenager and a grown woman. I knew I was tired a lot but I simply didn't have knowledge and the mental faculties to process that my every day, constant tired was so much worse than anyone else's every day tired.

I've tried exercise because I have heard more than once that you had to use energy to get energy. It does help, but without effective treatment I always struggle to make it a regular part of my life. How could I use energy to gain more when I have so little to begin with? For those of you who know enough about cars, it's like relying on an alternator to recharge your car battery when the battery is completely dead. Without at least a little bit of power to start the car the alternator is a basically a useless hunk of metal. That is how I feel a lot of days. Like a car without enough power to start, much less run long enough to recharge my battery.

My life went on like this for almost 15 very long years. Finally, in the Summer of 2005, some of my extended family came to visit. After about half an hour of watching me struggle just to get through a conversation, my aunt sat started telling about the problems my cousins had been having in school. How my youngest cousin, who I think was in third or fourth grade at the time, would fall asleep in the middle of school nearly every day, sleep for about half an hour to an hour, then be perfectly fine for the rest of the day. My other cousin, who I've always known as being incredibly sweet and kind, had behavior problems in high school that had gotten pretty serious. After years of doctors, tests, behavioral assessments, changes in diet, and I have no idea how much else, they finally found an answer. If I remember correctly, my youngest cousin was the first to be diagnosed with Narcolepsy by a sleep specialist. (Who is an amazing doctor who actually has Narcolepsy himself.) My aunt, being the amazing mother that she is, researched the disorder, learning everything she could about it, and realized it might be the cause of the behavioral issues her other daughter had been exhibiting and get her in to be tested. Eventually, four of my five cousins and my uncle were all diagnosed and started treatment.

My aunt had learned enough about it from her research and living with four other PWN that she had a pretty good idea how the symptoms manifested, and she was fairly certain I had it too. At the time, I was about five months pregnant with my youngest, so I imagined testing would have been difficult, or even skewed by the fact, so I put off testing. Besides, being told I probably had Narcolepsy was terrifying. I didn't want to admit that my issues might be so bad that they actually added up to a neurological disorder! Who would?

There were three things that actually convinced me to get tested. One was pretty superficial, I'll admit, but one of my cousins had lost like 50 pounds after she had been diagnosed and started treatment. Even when I wasn't pregnant, I had almost always been 50-100 pounds overweight. Those uncontrollable eating habits and sugar cravings I mentioned earlier? Not a joke or an over exaggeration. I used to bake 4-6 dozen cookies and I would eat at least half of them myself. In one afternoon. This is one of the main reasons I don't bake any more. My aunt explained that actually getting good, restful sleep would help more than I knew, and that made sense to me. (The infographics linked above from HuffingtonPost and Mic.com explain the science behind this more in depth.)

The second thing that convinced me to get tested was this list of "You might have Narcolepsy if..." jokes. Far too many of them made me cry, and I still laugh at nearly all of them because they are so very true. I imagine for non-PWN or for anyone who has never lived with a PWN, they might not make a lot of sense or will just be weird. But I imagine most people, if you've read this far, either know me well enough to understand, or know/are another PWN who gets it.

Photo by Firesam

If those two weren't enough, the third happened on Christmas morning a few months after my youngest was born. I'd pretty much accepted that I definitely had sleep issues by that time, but the combination of new baby, plus staying up late wrapping presents and "waiting for Santa" meant I was beyond even my normal degree of tired. I was bent over picking something up from the floor with my big butt in the air and I thought I heard my brother-in-law quietly say something about my weight. I don't even know if he actually said anything at all and it was one of those stupid hallucination or if he did say something but it had nothing to do with me. But I flipped out, yelled something defensive, threw some random object at him (thankfully I missed), and burst into tears. My family was speechless. I was mortified because it only took about two seconds to realize all of it had been because I was beyond exhausted and I just snapped. Now I get that I really had no control over my actions, but that only makes it a little less embarrassing. On that fun note, I'm going to end this post, and will talk about getting actually diagnosed and go from there. (For those of you still reading and whom I haven't scared off with the craziness of my life!)