The last week has been quite interesting. I'd say that you'd be proud of me, but, my reality is that many of you won't be, and I'm learning to deal with that.
You see...I finally went back to the neurologist. After a brief discussion about why, as someone with insomnia, I was taking a nap while waiting for him, the doctor eventually found my chart and realized that taking a nap was more than appropriate after waiting for him for an hour after my appointment time, especially since, oh yeah, I have narcolepsy not insomnia. Completely different doc... (You can't blame him too much though...not only was it 3 years ago that I last saw him, my hair was about 10 inches longer back then and I was told at least a few times that my picture didn't look anything like me now. Of course, maybe that was because they had the wrong chart...but I digress)
Anyway, we discussed taking medication even though we're not on birth control. I reminded him that although we aren't on bc, its been 21 months and no pregnancy, therefore it will be highly unlikely to get pregnant spontaneously in the next few months until we go to the dr to do something about it and, even more so, we are constantly monitoring for pregnancy so we would know nearly immediately and could stop taking the medication. He said overall, you have to weigh the risks of falling asleep driving (which i do all the time) or falling asleep while cooking, and the danger that poses to your family compared to the danger of taking a medication while pregnant that, as of yet, is not known to cause any complications. Weighing our situation, it seemed reasonable to start me on Provigil.
This my friends is extremely exciting and yet scary news. I hate taking medication. I really, really, hate taking medication. I hate to be in an altered state of mind so much so that I won't take any medication for pain besides the occasional Tylenol 3 or 600's of Motrin for the occasional migraine, and, of course antibiotics when necesary. Spent $100 on tamiflu when I had the flu a few months ago...didn't even take one pill. (shh...don't tell J or the dr). Its just not who I am. And, its REALLy not who I am when it comes to being pregnant. When I was pregnant with Logan I think I took one benadryl for allergies and one Z pack due to a sinus infection. Nothing else, at all, including for labor, delivery, and recovery. So, taking medication ongoing for the rest of my life, excluding known pregnancy and breastfeeding periods, particularly a stimulant like providgil, really makes me a bit nervous.
On the other hand, the opportunity to take medication brings promise of a brighter tomorrow. And, the first day I took the medication I noticed a remarkeable difference. So much more alert and aware of what was going on around me. If you haven't been there, I don't think I could explain it, other than to say I actually felt awake. At one point in the day I sat in a meeting and thought "the last time I sat with a group of people and felt this alert was in junior high"...the meeting reminded me of what it felt like to be in junior high and actively engaged in the class. It was amazing. I was happy and felt great. Of course, my luck, the night before I started to come down with a nasty sinus infection or cold, probably a cold, and it hit me hard the rest of the weekend so much so that the medicine didn't help much since my body needed its rest.
But, with my joy comes some very interesting reactions. I thought people would be happy for me. What I've found is that, although some people are happy for me, more often than not the reaction is skeptical as to whether or not I need the medication. Now, let me first say that I've made it 11 years so far with this condition and no medication, so there is something to be said in that no, I don't NEED the medication. But oh my gosh...wow...I can't believe how different my days have been with it. Although I've been tired, I haven't had any sleep attacks. I can see clearly, which, I know sounds weird. I can hear AND understand what others are saying. I have felt fine walking around and cleaning the house and doing yardwork and whatever else needs to be done...I haven't felt the need to just sit on the couch and sleep. I can actually think clearly and write things down as I think it and just overall manage life better. And I've been much more emotional. Not sure if this is good or bad, but it just is. I think its because I'm alert enough to experience life. I don't know.
Nevertheless, the medication is a stimulant, and that in itself causes concern. The dr told me to take one in the morning, and then, after a few days if it seems like I need more then take one at lunch time. I realized right away that the medication wore off quickly at around 3 or 4, so on the 4th of July I took the second pill at lunch. My husband was quick to tell me that he was worried about me because I was addicted to it or going to be addicted to it. Don't get me wrong, I appreciate his concern and want EVERYONE to feel free to approach me if they feel I am adversely affected by the drug and/or addicted to it, but that REALLY, REALLY hurt me. Really badly.
I have always been so careful to stay away from any kind of substance that I can be addicted to. I have never had alcohol. I have never had any kind of drugs. I have never smoked. I am really sensitive as well to other types of addictions, knowing that addictive behavior can be borne out of pretty much any kind of behaviour. I have never even had a narcotic painkiller after the surgeries that I've had. Refused to take them. And so the idea that I would willingly take a drug and abuse it after one day was hurtful. Especially since I was following the doctor's instructions. Not to mention mky reluctance to take the medication in the first place since the idea of taking medication goes against everything I believe in.
But even deeper, to me it meant that he didn't believe that I had a condition that caused so much challenge. I have always been someone prone to sickness...I catch any kind of ENT germ that crosses within 25 miles of my door. That is partly because I was born with GERD but not diagnosed until I was 17 and therefore had trouble keeping good bacteria in my body to fight off the bad stuff..yadda yadda yadda. Add on top of that my migraines, which I started getting when I was 5 but more regularly around puberty (go figure...) and are caused in me by two things...hormones and changes in sleep behavior (i.e, when I don't get enough sleep). Add to that the excessive tiredness and an odd low blood pressure history, it made me...a natural problem solver...dig for what this all could be. Not because of wanting to be sick, but because I wanted to find a solution so that I could be well. I've seen neurologists for the migraines, cardiologists for the blood pressure, gastroenterologists, ENT's, etc. This has led many of my family members to joke about me being a hyperchondriac. That on top of my tendency to be injured and have extremely random illnesses (remember my hand surgery for the tumor that 'only' happens in males?...and yes, I found another female with the same problem...) all of this has made me try really hard not to appear like I'm feeling ill when I am. And, has led me to be the butt of many jokes some of which were spoken by my husband who with good intentions (?) or at least out of a good spirit has actually called me a hyperchondriac.
So I was relieved to learn that most of my health problems (and even my tendency to be less graceful) are caused by or at least made more prevalent by the narcolepsy. Low blood pressure and narcolepsy go hand in hand. Obviously, the tiredness (falling asleep standing up talking anyone?). The tendency to completely fall down when startled. Even the migraines, at least to some degree...all caused by or made worse by narcolepsy. Narcolepsy that was confirmed by a series of tests that measure brain waves and other bodily functions while sleeping, something I can't make up. Tests read by a board certified neurologist that is a director of a sleep center. A report that says, without doubt, I have narcolepsy. Not because I SAY I do, but because I actually do.
J says its hard to believe, not only because its hard for someone without it to understand what its like to have it, but also because I don't show it. And he's right. I struggle in the most part silently. Partly to avoid explaining it to people. Partly to avoid pity. Partly to avoid the situation in general and pretend it doesn't exist. Mostly just to choose to live the life I have to its fullest, narcolepsy or not. And I realized that I'm actually punished for that. If I were to choose to "give in" to the condition and let it rule me, then people would be more likely to understand and therefore support me. If I quit my job so that I could stay home and sleep whenever I needed to, people would get it. If I chose not to drive anywhere or gave up my license voluntarily, people would get it. If I chose to let myself sleep whenever my body was telling me I needed it rather than, as I do, try to stay as fully awake and alert to whats going on around me at all times, people would get it. They would get how often I try to struggle to stay awake. They would see how often my body tells me I need to sleep (or, actually forces me to do so). They would see all the times I do ridiculously stupid things (like fill up the dog's food dish then put it in the refrigerator) because I'm running on automatic behavior gone mad. If there were a camera following me around silently, people would see how often I fall asleep while driving, how often I sing at the top of my lungs like a drunk sailor trying to stay awake instead of falling asleep while driving. How often I have no idea what you just said because my mind was sleeping and my body was spending all the energy it had trying to fool you all into thinking I'm awake. Then people would understand.
But I don't do any of those things. I've spent almost half my life struggling to stay awake while choosing to live my life anyway. While choosing not to give in to my flesh but to "beat my body into submission" and live the best I can, doing the best I can as much as possible. Because of this, the general public has no idea that I struggle. Those closest to me rarely do either. I don't care what the general public thinks of me. But I do care about what those closest to me think about me...for better or worse. Maybe thats a fault of mine. Maybe I put too much care into what they think. But at some level we are all looking for acceptance as who we are. I didn't choose this. I would never have chosen it. And, at some point I'm sure I'll get to the point where I'm ok if people don't get it or don't acknowledge the condition I face. I've never really had to justify it before. But now, with the medication, I feel like I have to justify why I'm taking it, even though those around me should know me by now in that I would never take a medication, especially one like this, if I didn't think it was essential. It's the reality I face. And yet its one I'm ok with. The reality that not everyone will understand, approve, or accept it is another reality I'm learning to deal with. One I'm having difficulty learning to accept.