By littlekellilee - 16/09/2016 04:27 - Canada
Add a comment - Reply to : #
You must be logged in to be able to post comments!
A lot of people, friends and family included, just don't know what to look for, and can actually be very cruel and unsupportive, even after an official diagnosis. Being exhausted and falling asleep is often seen as being lazy and not managing your sleep routine correctly. It's looked at as the individual's fault, instead of there being an actual medical problem, even when you're uncontrollably and randomly falling asleep. If people don't experience it themselves, a lot of the time they just don't understand and are therefore unsympathetic, they think you're exaggerating. Tiredness and exhaustion is looked at as a character flaw, instead of what it's actually a sign of, which is lack of sleep. This needs to change.
Hey, I have that too. I had the symptoms for 2yrs before being diagnosed as well because of similar reasons. I was a teen when it started too, so a lot of doctors would brush off my exhaustion as "oh, she's just a teenager, she's supposed to be more tired, it's normal." It isn't normal, a narcoleptic's exhaustion/sleep attacks are equivalent to a normal person going 2-3 days without sleep and are impossible to fight or prevent. It's a hard disorder to diagnose if you don't know a lot about it, and aren't looking for it. I can tell you that it gets a lot better after your diagnosis, finally having something that explains what you're going through is very relieving. Finding the right meds is helpful too, some people even go without meds as well. The real importance is sleep schedule, don't push yourself, sleep is more important for us than it is for anyone else. If you want anymore information, there's lots of support groups on the internet and Facebook that are really helpful.
Narcoleptics actually often experience insomnia as well, especially at night because we get a lot of REM sleep in the daytime from the sleep attacks. The sleep attacks aren't true sleeping, we don't go through the normal sleep cycle, just straight to REM sleep (it's the reason we pass out suddenly) which provides no restful, refreshing sleep. After the attack, we will still wake up exhausted. When I was undiagnosed, I was lucky if I'd get 2-3hrs of sleep at night, because a lot of the time I wouldn't get any sleep at all. So we actually know how you feel, insomnia is not fun.
Well now you know and knowing is half the battle! But in all seriousness, it's good you went in, so they can help. Would be terrible to randomly fall asleep at the wheel of a car.
Glad you got that wake-up call!