hey uh. do other people with narcolepsy feel sick often?
By sick I mean just.....you feel sick. You need to lie in bed. It's not just exhaustion and headaches, it's feeling SICK, I don't know how to explain it exactly but like....it used to be every so often I'd have a day like this and now it's at least once a week.
It's not cold or flu symptoms. You just feel BAD.
I'm speaking to my sleep doctor later and im making a regular appointment too but im wondering if this is a normal narcolepsy thing or if something is seriously wrong
-mentioning my anxiety when it had nothing to do with the conversation
-telling me I don't have a thyroid problem in spite of the fact that every doctor ever has told me it's possible and I have every single symptom. but because they haven't found anything yet it must be impossible.
-gaining 40 pounds in two months isn't a problem. it's probably because I spend so much time in bed sleeping. obviously.
-"You shouldn't nap in bed. Nap on a couch, or a chair, or in the sun. circadian rhythms and sleep hygiene are very important" (Baby do NOT try to doctorsplain narcolepsy to me. I know more than you, shut the fuck up, im not even HERE for the narcolepsy)
and now the circle begins again. can't wait for nothing to come back in the blood, for them to send me to someone else, and then for those people to give up too.
being chronically ill is just consistently wondering how some people got through med school
This is gonna be super personal so. Under the thingy it goes.
You start falling asleep at stoplights.
It's fine, you think. It's only once or twice.
And maybe you're a little bit more sleepy than other people your age, but you're still growing. That's bound to make anyone tired.
You start sleeping all day. You take at least three naps on the clock. You're lucky you work from home, because they haven't noticed yet.
The doctors say it's nothing. Everyone's tired. You have anxiety. Depression. Both of those things are exhausting. You're probably a hypochondriac.
Ten years after it all starts, a doctor refers you to a sleep study.
You don't know why it's taken this long.
Finally, you have confirmation. You receive the results a few days later, along with a shiny new chronic illness diagnosis. This is super treatable, you're sure. It'll be fine.
You can't stay awake for more than a few hours at a time anymore.
The first specialist you see prescribes you medication that makes your vision blurry, but she insists that it doesn't.
A year after getting off the meds, your vision is still blurry. You don't think it's going away.
The doctor tries to take away your diagnosis because she doesn't like that she wasn't the one to give it to you. Then she tells you you're probably not sick at all, because all the weight you've gained from your mental health medication is actually the real reason you feel so bad.
You don't go back.
It gets worse.
You start to feel sick. Headaches. Nausea. Dizziness. You're sleeping even more.
The second specialist you see is excited to treat you. He has a medication that he knows will work. He's so sure of it.
It makes you violently ill. He tells you to stick it out.
You do, for four and a half months.
You lose your job. You run out of money. You don't see your friends anymore. Your brain fog is so bad that you can't count sometimes.
You're scared you're ruining all of your relationships because you can't talk about anything that isn't your disability.
The doctor finally takes you off of the medication, but says that, of course, his medication isn't the reason you got sicker. In fact, since it didn't work, you're probably treatment resistant or you don't have the illness you think you have at all.
Sorry. He can't do anything else for you.
You get a 12 dollar monthly fee taken from your checking account. You only had 12 dollars in the checking account in the first place.
You've gone through every specialist who takes your insurance.
Want an intake with another doctor? That'll be a few thousand dollars, please.
You watch from afar as everyone you know has babies, everyone starts buying houses. Some of your friends make six figures at their dream jobs.
You've been sleeping in the same bed across the hall from your parents for 28 years.
You're almost 32. You're starting to wonder what the point of it all is.
You get denied for food stamps. They won't tell you why.
You're missing every hangout your friends have because your body is too broken. You try going to a friend's birthday party. You leave after two hours because it was too hot and your body overreacted.
You can't do anything you love anymore. You have no energy, no money. All you can do is lie in bed and count all the ways you've failed yourself.
You don't know why anyone wants to be around you if you have no value.
You're not suicidal all the time.
Just a lot of the time.
Your eating disorder starts acting up because of the stress. You have GI problems but the doctor you go to for that doesn't take his eyes away from your breasts, except to comment that your arms are fat.
You think you probably also have an autoimmune disorder, but you have no time or energy to worry about that.
You're the sick one.
You're the disabled one.
You don't know if you're ever going to be anything more.
You lie in bed with your cat and try not to pick up your phone, because if you do you know you'll complain, and if you do that too much they're all going to leave you.
It all happened so quickly. You can't remember a time you weren't sick, even though it wasn't that long ago.
its lowkey wild how rapidly my health has deteriorated in the last month alone?
it's genuinely gone from "awful but survivable" to "debilitating and disabling"
I can't do things anymore. Like. I can't spend full days with people bc unless I nap i get sick. And I cant do anything at night because Ill fall asleep.
I spent one of the days of katsu in bed sick the entire time. Today I spent the day with friends and had to pass out on a bench at the mall and spent half the time disoriented.
I can no longer do evening shifts for my job bc I get sleep attacks, which means I have fewer hours now.
(Not to mention the fact that I had to spend Friday night mourning my old life and accepting that now I'll never be able to work a 9-5 or do things the way healthy people do them etc etc but thats another post for another time)
I'm still enjoying life and doing things but I'm slightly concerned that if it continues to get bad I'll no longer be able to do anything or go anywhere. If I have to spend the rest of my life in bed I WILL go insane.
Narcolepsy update! I don't know why I've been sharing medical stuff with yall but regardless lmao
Went back today and she was SO MUCH NICER. She doesn't know if I have narcolepsy, we need to do another test to see, so that's still true. But here's the news: I'M GETTING MEDICATED! She's giving me medication to stay awake!
This is amazing and I literally SKIPPED out of the appointment. Soon I might stay awake all day!!!!!!!!! Revolutionary!
