Thursday, March 13, 2014

How did we get here?

It truly amazes me what the last two years have brought my way. Sometimes I wonder if the years before that were all just a big dream. It has been such an amazing, strange journey. I still have no idea where to even begin even writing it all down here, but I know I need to start somewhere. I thought I was going to start with the boys, but typing just now, I think I will start with me. I don't do that very often, today is a good day to!

Last Fall I finally decided it was time to find a doctor here in the new place we moved to. It had been over a year and I had some concerns. For many, many, many years I have asked my doctors why I was so incredibly tired. Why could I sleep 9 hours and wake up feeling like I hadn't slept at all. I could sleep almost anywhere at any time and it drove me nuts. I had been like this since I was a teenager. When I was a teenager I was always told it was because I was a teenager, staying up all night, sleeping all day.

When I was in college, same thing. But the thing is, I was married when I was in undergrad so it wasn't like I was out partying like the rest of the college crowd. I actually waited a year after high school before starting college, so I wasn't a typical freshman to begin with.

When I moved to Dallas to go to grad school, it was because I worked full-time, went to school full-time, and was newly divorced (new found freedom and all you know).

After I got married again and had kids, it was because of the obvious, I had small children and a husband that traveled all the time. I remember telling my doctor that if I could just get a good night's sleep I would be ok. But even after being on Lunesta for an entire year I still didn't feel any better.

I had kind of given up to be honest. When we moved here I had gone to the GYN and had told him I thought it was my hormones and once again a full blood panel was ordered to check hormones, thyroid and all the usual suspects when you complain of being tired all the time. So a year went by and I had really just kind of gave up.

Over the summer it got worse and worse. It was to a point that I literally could not stay awake. I got to a point I thought I was severely depressed or something but didn't know what to do. But the thing about it is I didn't want to be in a bed sleeping. I wanted to be up doing things with my kids and enjoying life. So I felt stuck.

After school started in the fall I thought things would get better. I would have a few hours each day to get things done and all would be well with the world again. It was just the summer blues and they would be gone soon. Nope, I was so wrong. I would drop the boys off at school and go home and start to get ready for the day and then it was just an overwhelming sensation of not being able to stay awake. I would sit down for a few minutes and the next thing I knew it was two hours later. I hated it. HATED it. It was driving me crazy. So I finally broke down and found a doctor to go and see. Which, funny enough, is probably a funny story for another post how that all came about.

I remember going in and her asking me a lot of questions. I originally went in thinking I wanted help with the fact I have Meniere's Disease and I was having severe vertigo attacks every other week that were taking me down for two straight days.

The heart stopping question for me was when she asked if I had ever fallen asleep at the wheel. I didn't want to answer her. I almost told her no, but I seriously cannot lie. I am terrible at it and it doesn't matter to whom I am speaking, it is just not in my nature. Fatal flaw I guess for me. But anyway, I digress. I answered her honestly. Years ago I had fallen asleep a few times, but had learned what the feeling preceding it was and would always have gum, ice water, a cold drink handy or pull over. So although I haven't done that in many, many years, I had and probably would have if I were one to push myself in some circumstances. But the thought of hurting someone else while I was driving always terrifies me. And now that I have kiddos I drive around there was no way I would ever risk injuring them.

I will never forget her looking at me, this woman who had only met me 30 minutes prior, and said I had Narcolepsy. What? I couldn't wrap my head around it. I honestly don't think I believed her. We all kind of have an idea in our heads of what Narcolepsy is, someone randomly falling asleep in their food the way TV portrays it in shows. I went home, started to read about it and oh my gosh. So much of my life now made so much sense. I think I kind of was in shock.

I went and filled the medication she prescribed and was sitting in line to pick my kids up from school. I thought, hmm, I'll try half of one of these pills and see what happens. I can't even begin to describe what happened after 20 minutes. It was like someone opened a roller shade in my head. I could almost literally feel the blind lifting. My thoughts became so clear and I actually felt awake. It was the strangest feeling I had experienced. And of course I immediately thought there was no way this was just because of one simple half a pill. But the next day, same exact thing. I was getting more done in minutes than I had all day some days before. I really could not believe how I felt. It was amazing and terrifying all at the same time. Amazing because I wanted to feel that good all the time. Terrifying because I couldn't believe how much of a brain fog I had lived in for so very long and I never wanted to feel like that again.

The last five months have been an incredible journey. It has been filled with so many ups and downs, but I am finally starting to understand so much about this crazy thing called narcolepsy. I have so many questions and things I want to try. It all seems to be tying in with both my own life and that of my children and it is just kind of crazy to me some days. But it is also one of the coolest, most amazing things ever too. I know there is a reason all of this is happening to me. I am positive of it. I still have no idea what that is, but so many theories and thoughts collide in my head these days I know it is something wonderful. And I get excited just thinking about the possibility that some day I will actually see that connection and understand the purpose for this all. Until then, I will just keep plugging away, one day at a time, one minute at a time some days, and try to soak in as much of the journey as I possibly can.

1 comment:

  1. I am so glad that the problem was diagnosed and treated. What a horrible issue to deal with, especially since you thought it was just you not getting enough sleep. Wonderful news!