Narcolepsy… Another fun side effect!

As stated before, some of my medicines come with a joyous array of side effects including (but not limited to) nausea, vomiting, dizziness, migraines, weight gain, and more recently, narcolepsy.

Now before you get worried, fear not, I don’t have the chronic disease in its entirety. My doctors say that it’s medication induced narcolepsy which means I only get the sleeplessness part of the condition, and that eventually it will go away, as my medicines/treatments change over time.  However, until then, I get to experience one of the most annoying side effects of all time, not to mention embarrassing.

The frustrating part about my version of narcolepsy is that I actually do get quite a lot of sleep. I’ve read a lot about narcolepsy and medical journals say patients are most inflicted by their disease when not getting enough sleep, or consuming too much caffeine, or eating large, heavy meals before bedtime. But that’s not me! I don’t drink caffeine after 2pm, I get a full 8 hours every night, often more, and I’m not allowed to eat after a certain time because of an existing GI disorder I’m already dealing with. So I’m pretty irritated by this “side effect” and its big contradiction in my body.

A normal day for me usually consists of waking up after a good 8-10 hours of sleep, staying active with activities, errands, doctors appointments, having a 1-2 hour nap in the afternoon to refuel my spoons, and then going to sleep relatively early around 9-10. Obviously with my disease I’m not out there running marathons, but I’m trying to live a normal life as best I can.

And you know what disrupts that? Falling asleep whenever and wherever.

Before writing this I dozed off just long enough for me to miss the game of BINGO I was playing on my kindle. One minute I’m looking at the countdown to the beginning of my game… 30 seconds…29..28..27… Then what I can only assume was about two minutes later, I was opening my eyes to the screen flashing ROUND OVER. Damn it!

Or last night, I wanted to watch a DVD in my room so I popped Prisoner of Azkaban in. The last thing I remember was Harry taking a walk with Professor Lupin in the fall, then opening my eyes to a snowy Shreiking Shack and Ron and Hermione pretending not to be interested. Now obviously that wasn’t the end of my world, I’ve seen that movie a bunch of times, but it’s the principal. I’m irritated that I’m losing huge gaps of time and have absolutely no control over it.

That’s not even the embarrassing part…

Sometimes, a little less often, I fall asleep while talking to people. Once it happened in a doctor’s office. One minute I was giving him my symptoms, the next I’m on the floor. I fell asleep and literally fell out of my chair! Thank goodness I didn’t hurt myself.

A couple times while walking with my mom I’ve started to drift off. I usually have warning though. I’ll tell her I’m feeling lightheaded or dizzy and we sit down. Though once I walked into a pillar when I was by myself because I dozed WHILE WALKING. I don’t understand the human brain all that much but that doesn’t seem right!

The embarrassing part is what my brain does when I fall asleep while talking. I drift off seamlessly in the middle of a sentence and then wake up almost immediately, but in my mind I’m not in the same conversation. I don’t know what happens up there, but I get confused and start talking about something completely different. And usually it takes me a moment or so to figure out what has happened, which leaves me mortified, and my companion perplexed. A few months ago my mom and I were in the car talking about normal day to day stuff, what route we should take to my doctors office. I dozed off and almost immediately woke up talking about chicken. Something about frying it and it being wrong. And that’s another thing, these times I start another conversation after dozing…I have no idea what I’m going on about it. It usually makes absolutely no sense at all and has nothing to do with what we’ve been talking about. It’s humiliating.

The good thing here is that I have good supportive friends and mom, whom usually just go with the flow when this happens. They realise I dozed and don’t mention the weird topic change and we continue our conversation. But  that’s not the point. The point is that it SUCKS. I don’t wanna be one of those crazy bag ladies on the street talking gibberish. So I’m trying to get even more sleep now than I used to, wondering if maybe that’s the cause.

Still if it seems like I take too many naps these days now you know it’s in the attempt to not start a random conversation with you about chickens. Or why I think I need a laptop bag even though I don’t possess a laptop (yeah that was another one….).

Narcolepsy…. you suck.

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About sixthousandsteps

In March of 2013, I was diagnosed with chronic Rheumatoid Arthritis and was told my disease was very aggressive. Every day since then has been an ongoing struggle and life lesson on how to stay positive and keep fighting. This blog is a glimpse of how it all came to be, and who knows what the future holds.

Posted on June 5, 2015, in The Journey. Bookmark the permalink. Leave a comment.

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