I'm married now! I honestly never thought that would happen! I'm in my mid-thirties, so I thought my chances of finding a good one were too slim. Luckily I was wrong! :)
Our wedding was a little over a month ago, and it was perfect! For about a year, we planned very carefully every detail of our wedding day (and most of the details worked perfectly - which is something I rarely hear from brides!). We didn't have a wedding planner, our budget was tiny for a wedding, and our families are huge. There was a whole lot of work to get done, and by some miracle, we did it!
Alright, I'm married. What's next? What do you think might be next? Well, these things can never really be planned, right? We're hoping to start a family. I am aware that I am older than most new brides, and I know full well all of the risks that go along with that, so I am being very careful to ensure the best results.
But what about having a family and being a person with Narcolepsy? Here is what I know:
-There is no Narcolepsy medicine that is Category A (The safest category of drugs to take while pregnant/nursing.)
-There may or may not even be a Category B drug for Narcolepsy (it depends on who you ask).
-It is often dangerous to drive as a person with Narcolepsy while it is untreated.
-Caffeine has demonstrated negative effects during pregnancy
For me, the decision was not the most difficult in the world, because I was living undiagnosed for over thirty years before being treated. I figured I'd try coming off of everything I was taking right after the wedding. More on that in a sec.
While I was trying to research what other people had done, I ran into a LOT of other people's opinions. Some of these opinions were very harsh. Some people basically asked how dare I inquire about taking any medication while pregnant. Well, here's how I dared: I had no idea whether it was harmful or not (to be perfectly honest, for some drugs, science doesn't know that either). If I didn't ask, how could I learn? I was a bit shocked to find such harsh words of judgement coming in my direction when all I was doing was asking - researching ahead of time so I could make an informed decision! So, to those people who ask how I dare even ask such a question, I respond, "How dare you judge someone who is responsibly researching in order to make the best decision?"
The other thing people said was that I simply should abandon my dreams of ever being a mother. The first basis for this argument was that whether or not I was medicated, I was still putting myself and any potential children in danger. Keep in mind, these internet strangers have no idea how severe or mild my symptoms are. Everyone is different. The second basis for this argument is the one I find most upsetting. They said that it would be so much more difficult for me to have a child than a person without Narcolepsy because of the exhaustion.
How ridiculous! Seriously! What if people really acted this way? What if people who have a disability, or even just a struggle of some sort just said, "Well, it is difficult for the healthiest, most 'perfect' person, so it must be impossible for me!" If that was the case, we wouldn't have Mozart's music. FDR would never have become President of the USA. Stephen Hawking would be a nobody like me. And I would lay in bed, sleeping my life away. Honestly people. Do you even think before you respond?
So, that is not the type of person I am. I am responsible, intelligent, and most of all, I am the embodiment of perseverance. If I can live my whole life to this point without anyone noticing that I had Narcolepsy, than I can do anything. So here's the plan:
So, naturally, I spoke with all of my doctors before making any changes, about 2 months before the wedding. I am not a doctor, so I NEVER recommend starting or stopping any medication without consulting the proper doctor first. We all decided I'd come off of every medication I take under careful supervision of my general doctor and all of my specialists. This works for me because I am a teacher and it is summer. If I sleep all day, there aren't any harsh consequences. We are currently aiming to achieve pregnancy after the summer, God willing. That way I can see how things go for a few weeks. Then I will discuss with my doctors how these things went and the best plan going forward into the school year.
Here's the point. If you have a sleep disorder - or any disorder/disability/struggle for that matter - please be who you are and be that well. You can truly do things that other people can do. Do not let anyone tell you that you can't. You know what you are capable of. No one else knows that the way you do. And, please do not tear each other down. Do not suggest that another person should not do what they know they can. This is a rare disorder - we need to stick together because there aren't many people out there who understand us the way we do. Only use your words to kindly support one another. It will really go a long way.
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