What is narcolepsy like? Rare disease day video
I did a video for Rare Disease Day. This is a great video to share with people who care about you that do not understand what you’re going through.
You can watch it embedded here:
Or, Click on this link: https://www.youtube.com/watch?v=yMHcuP02Fgs&t=94s
Or read the transcript below.
hey Dawn Super here today is rare disease day February 28th it’s supposed to be the 29th but
obviously leap year is rare and that’s why they picked this day my rare disease
is narcolepsy type one with cataplexy and so I just wanted to talk about that for a few minutes
I’ve had symptoms of narcolepsy since I was 11. I wasn’t diagnosed until I was 22 even though I saw
a doctor trying to figure out what was wrong with me that doctor never landed on sleep disorders
I ended up getting a referral for Sleep testing from a psychologist because everybody kept telling
me it was all in my head and I figured well if it is all in my head a psychologist will
help me figure that out on the first visit I told him that after lunch every day I would
feel so tired I would I would have to put my head down on my desk but even though I couldn’t move I
could still hear everything that was going on I got an A in the class it was like I was frozen
and when he heard that he knew that it was narcolepsy and
I went for the sleep study and I was very fortunate to get diagnosed at a teaching
hospital (university) and I say fortunate because they were interested in me if you watch any kind
of medical shows you see all these complicated people come into doctor House’s office or whatever
show and the Physicians have to rush to figure out the problem and take all these tests and figure it
out and then they figured out and everything’s you know great surgery whatever so I think
people with rare disorders especially go to the doctor hoping to get House and end up with Shed
[Laughter] my experience at the teaching hospital was really cool because they were
fascinated by me I not only have narcolepsy with cataplexy I also have what was called at the time
nocturnal myoclonus they call it a periodic limb movement disorder now (PLMD) and so the thing with
narcolepsy is that your brain is missing for type one your brain is missing a component they call
orexin hypocretin there’s two different names because it was diagnosed / it was found at the
same time by scientists in two different countries / doctors in two different countries anyway
not super important but my body doesn’t have this substance and think of it like diabetes people
with diabetes can’t regulate their blood sugar so they have to do certain things to keep their blood
sugar at optimal levels and people with narcolepsy can’t regulate their sleep wake cycles so they
can find themselves sleepy when everyone else is awake or awake when everyone else is sleepy and
I run a group with like 2500 people with narcolepsy and I’ve been in groups with 10 000
people with narcolepsy and I can tell you none of us really have it the same so even if you’ve met
someone with narcolepsy if you were like friends or a family member who had narcolepsy it’s not
necessarily the same as someone else’s narcolepsy and that causes problems for people with
narcolepsy because it is so rare and there isn’t a bunch of money spent on it to analyze you know
what how does it happen and why does it happen and the drugs are ridiculously expensive and they have
terrible side effects and there really isn’t legislation to protect people with narcolepsy
if you have the symptoms to the point where you can’t function and work a job then
going on disability takes years and if you’re like me like I never paid in a lot of money to
tax what do you call it you know to get the Social Security points like I was a bartender I didn’t
make a lot of money in my life and so and then I worked for myself so I didn’t have a lot of
credits right for whatever so if I tried to go on disability I’d get like 300 a month I’d be lucky
if I could feed myself with that so the challenges are super great to exist as a person with a rare
disease like narcolepsy no one understands it the doctors don’t know what to do with you there’s no
protections for you and it’s very difficult to earn a living if you work for someone else
if you’re watching this and you have narcolepsy I highly recommend finding a way to earn your own
living work for yourself I have a special set of skills I I bill myself out as a consultant
and I do coaching and those are things that I can book on my own time I’m about to take my
second nap of the day now it’s just turned three o’clock in the afternoon and I’m just spent and
I didn’t do anything to you know exhaust myself it’s just the way that narcolepsy works
at night I try to go to sleep I can’t sleep I’ve had insomnia for the last couple of years and so
when my brain wants to sleep I need to try and accommodate it if I can and living like
that is super challenging especially when other people are around you trying to shove
you into this little box no you got to get up in the morning you got to go to bed at
night and you’re not supposed to nap people don’t you know people see naps as a luxury
but they’re not for us and they’re not even optional if we ignore the signs that we need
to nap our brain will nap for us that’s where you see the whole you know falling asleep in your soup
thing I had that a lot when I was younger because I just didn’t know what was wrong
with me so I kept trying to go go go and I would just I’d just be out and now I can tell I have
a tell in my brain like I get a sensation like something’s been unplugged and I know I’ve got
about a half hour to get into a place where I can close my eyes and let myself fall asleep or I’m
gonna start getting restless leg like my leg is gonna start jumping like crazy and I’m gonna start
yawning like crazy and my eyes are going to water or they’re going to be painfully dry and itchy
I start to bump into things I look drunk sometimes super clumsy I might roll my ankle
or drop things I have a very difficult time concentrating if you want to know what it’s
like to live with narcolepsy take a Google at symptoms of sleep deprivation because it’s so
much more than just needing a nap like even when I was sleeping 18 hours a day that movement disorder
that I mentioned was pulling me through all the sleep cycles I wake up 97 times in a six hour
sleep study that’s a lot so even though I slept at six hours I didn’t really because I was never
really in that restful stage of sleep and that starts to compound on you and it leads to pain
disorders and emotional issues and skin problems I mean the body needs to sleep so yeah that’s what
it’s like living with narcolepsy and I have to be mindful of what I eat where I go what I listen to
it’s a it’s a challenging life to be sure I’m grateful for my friends that they tell me that
I make it look easy but they see they see how hard it is to keep all the plates spinning and not you
know dive down into getting worse in addition to narcolepsy I have eight other disorders so
I’m dealing with symptoms anywhere from seven to fifteen symptoms like all day every day and
I could very easily let that turn me into a miserable person right like being in pain all the
time twitching all the time having to say no to so many things there’s a lot to it and if you’re in
that situation I encourage you to try and focus on the good things that you do have in your life and
let those take Center Stage have your pity party for one whenever you need to cry your tears and
eat your cake but when it comes down to it this is just the meatsuit that you got and you got to
make it work as best you can and you gotta be gentle with yourself and kind to yourself and
especially when no one else around you is gotta be your own cheerleader you gotta have your own back
and look out for yourself and try and surround yourself with people who do too if you do have
narcolepsy or you’re a family member or a loved one of someone who has narcolepsy I have a support
group on Facebook it’s called the positively narcolepsy group it’s not a venting or whining
group it’s a group for talking about things like how to fall asleep and what to do with your kids
and meals and coping work family home Hobbies it’s about life and you just happen to have an
narcolepsy I like to call it a cocktail party where everyone just happens to have narcolepsy
all right that’s it rare disease day if you get the opportunity to support someone with
narcolepsy even if it’s just to encourage them and say hey you’re really strong Navy Seals go
through five days of sleep deprivation for hell week and the average person lives with three
days sleep deprivation the average person with narcolepsy so be kind it’s not easy
make it a great day the choice is always yours
Thank you for your support!
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