I’ve been on a number of medications for Narcolepsy, but no medication has ever changed the fact that there are just certain things I have to avoid doing because I have Narcolepsy. In other words, no medication has ever worked in a way that I could give up the lifestyle changes that have long been a part of my life.
I do my best to accept the fact that I have to do what works best for me and not what works for other people.
And yes, I often regret the fact that I can’t be more ‘normal’ when it comes to sleep, but at the end of the day, I can’t change who I am (a Narcoleptic) – and the simple truth of the matter is there are certain choices I have to make and things I have to deal with in order to live the life I want to live and feel my best, despite my Narcolepsy.
Unfortunately, when you’re 26 like me, the average person your age generally has pretty poor sleep habits, so when you keep to the more recommended sleep habits (a regular sleep schedule, 7-8 hours per night), you end up feeling like the odd man out.
Below, a short list of some of the lifestyle changes/ decisions/ realities that I have come to accept as just being part of my life with Narcolepsy:
1. I can’t stay up late at night – or if I can it’s usually a bad idea because a) by the time I do decide to go to bed I’m so tired I’m breaking down and having trouble walking to the bed and/or b) I’m going to pay badly for it the next day when my sleep schedule is messed up and I am unusually tired all day (for some reason, I don’t sleep the same if I go to bed at say, 2 am, vs. midnight or earlier. The later I go to bed, the more disturbed and weird my sleep will be…). And yes, I know I’m 26 years old, but for me anything past midnight is really late. I really should always go to bed earlier, but it’s hard when things are going on or I just plain don’t feel like going to bed. But I try to be in bed by 11 pm (I’m always tired enough to go to bed then…).
2. I have to make certain choices about going out at night. Usually I avoid staying up late, even on the weekends, although sometimes I will ignore what I know I should be doing and stay up to watch a movie with my husband until 2 am. Unfortunately, as much as I wish I could do it, I don’t usually stay out really late going clubbing or what have you because I just get too tired (and things are never fun when I’m way overtired). Occasionally I will go clubbing or stay out late doing something else (for example, my husband and I went clubbing on Halloween) – I can usually force myself to stay up until 2 am if I have a nap late at night before leaving and provided that I have someone else with me to keep me from going home earlier (lol). Sometimes I make the tradeoff and stay up late to do something, knowing I’m going to feel awful the next day (although I always think, oh, maybe this time it will be different and I’ll feel fine, lol), but I don’t do this on a regular basis. When I do go out, I usually have to come home earlier than most people, but I’m pretty much okay with that as long as I don’t feel that I am ruining anyone else’s fun. My husband would like to stay out dancing until 5 am – me, I can barely force myself to stay until 2 am. I would really like to go out more often at night (and I know my husband would too), but I always feel badly about making us come home early, in addition to the fact that I just get tired right when the nightlife is “heating up.” It’s a balance I haven’t yet perfected: figuring out how to “have a nightlife” without torturing myself with staying up way too late.
3. I have no choice: I need at least 7 or 8 hours of sleep (really, 8), and often times I sleep more than that if that is an option. I’ve never pulled an all nighter of any sort (I know!, how weird am I? lol). I’ve tried to only get a few hours sleep at night in order to do something (say, finish packing for a trip), but it never works: I always end up going to bed. I understand that many "normal people” (ie non-Narcoleptics) can get 4 hours sleep one night, drink a bunch of coffee, and act relatively normally (sometimes they even do this for multiple days in a row!), but this is completely foreign to me. I mean, I hear that people do this and I’ve witnessed my husband do this many times, but personally, I’ve never managed to do this, kind of like I’ve never managed to levitate a cup of tea with my mind (although, on second thought, this analogy doesn’t work because my husband can’t do this either. I don’t think. ha ha). I’m sure that I’m capable of getting only 4 hours sleep a night, I just think that the scenario would have to involve holding me at gunpoint. Or a burning building. You get the picture. As a Narcoleptic, I have no choice but to get at least 7 or 8 hours, or else I’ll probably find a way to stay in bed and get them anyways (you know how it is: you manage to convince yourself that yes, you can get ready to go in 10 minutes. Including your shower. and you really do believe it – until you’re out of bed).
4. I have to take my daytime naps, which means that sometimes I have to do things differently than other people and miss out on things.
5. I don’t drink much alcohol because I have Narcolepsy. To be honest, I don’t think I would drink much even if I didn’t have Narcolepsy, but having Narcolepsy, I do have to watch it with alcohol. Lately I don’t drink alcohol anyways because of the migraine diet thing, but previously I would usually only have one alcoholic drink (max 2 drinks if they are spread out over more time) if we went out at night because alcohol has such a big effect on me. It makes me sleepy (which isn’t good when I’m already tired at night), and it loosens my tongue a bit (something that being really tired already does to an extent), so that I start telling lots of jokes and talking way too much (if you’re lucky, I’ll start telling stories about my dead dog). And when I’m really tired late at night, I already have more cataplexy than usual, but with alcohol this is worse. Unfortunately, when I stay up really late and am way overtired at night, I tend to act a bit like I am tipsy or a bit drunk anyways (things are more funny than they should be, less coordination, slurring my words, etc.), so adding much alcohol to the equation is a very bad idea. On the bright side: I don’t think I could ever be an alcoholic or a binge drinker or what have you. I’m just way too sensitive to alcohol. Fortunately I don’t ‘need’ alcohol to get me on the dance floor.
6. I don’t drive late at night. I would never drive home at 2 am because I know that I am just too tired to do it safely, and unfortunately I don’t think a short nap would help all that much in this situation. I also don’t think I would ever drive for many hours in a row without stopping and taking a break. With driving, I have to take being tired very seriously. When I’m tired, I’ll take a nap before I go, and if I really think that I am sleepy enough to fall asleep, I wouldn’t drive period.
7. Did I say that this was a short list? ha ha, my bad.
What lifestyle choices have you had to accept since having Narcolepsy? How do you deal with them?
P.S. I know, I know, I haven’t been posting much over the past month. I don’t know what happened, but I just haven’t been able to finish a post easily. I got out of the habit of posting regularly, and now I find it is quite hard to write at all! I’ll start posts, but I have trouble finishing them… But I’m going to start making an effort to post regularly again (although probably more like every other day instead of daily)… In upcoming posts, I’d really like to talk more about the mental side of dealing with Narcolepsy, for example, dealing with family and friends, deciding what (and if) to tell people about your Narcolepsy, and learning to accept what you can and cannot do.
P.P.S. Happy belated Easter! Here in Germany, Easter Monday was an official holiday so we had a nice long weekend… what can I say, this isn’t the US (Germans aren’t all that into political correctness, at least not like we Americans are. Here, people have Easter break instead of Spring break…)

