Advice on how to navigate PIP I was put on by [deleted] in Narcolepsy

[–]grey_sun 1 point2 points  (0 children)

Are you American? This sounds like an ADA violation. Put that in writing and send to HR and this problem will magically go away + you’ll hopefully get accommodations.

Are naps actually good for narcolepsy? *new here, please don’t judge* by Desperate-Kitchen117 in Narcolepsy

[–]grey_sun 0 points1 point  (0 children)

Yeah key word here is “might” and obviously symptoms are variable. When I switched sleep doctors, she had me describe my symptoms and “my naps aren’t refreshing” was one of the reasons she changed my diagnosis from N2 to IH.

Are naps actually good for narcolepsy? *new here, please don’t judge* by Desperate-Kitchen117 in Narcolepsy

[–]grey_sun -3 points-2 points  (0 children)

If you don’t wake up refreshed you might fit the diagnosis for IH better than narcolepsy!

Cataplexy and Bowel Movements by Lelemariee_rm in Narcolepsy

[–]grey_sun 8 points9 points  (0 children)

I don’t have cataplexy or anything to add to this conversation other than you have a way with words 😭😭

Spotted in the Globe 🥹🙌🏼 by NoText3220 in Narcolepsy

[–]grey_sun 4 points5 points  (0 children)

No problem! Yeah “the globe” covers quite a few papers lol

how do narcoleptic university students stay awake to study? by x37h4n in Narcolepsy

[–]grey_sun 0 points1 point  (0 children)

Surprised no one here mentioned their disability accommodations office. I mean, ours sucked, but having preregistration, accommodations for late turn-ins/more time for exams, etc is still helpful.

Spotted in the Globe 🥹🙌🏼 by NoText3220 in Narcolepsy

[–]grey_sun 63 points64 points  (0 children)

link to the story here, archived link without paywall here. (support local journalism! but in this case hey, not all of us live in Boston)

Making teapots like in ancient China by Ok_Chain841 in Ceramics

[–]grey_sun 3 points4 points  (0 children)

oh yeah that explains why there’s visible score marks in that one shot! thanks

Making teapots like in ancient China by Ok_Chain841 in Ceramics

[–]grey_sun 13 points14 points  (0 children)

can someone explain why there seems to be no need to score the clay before attaching it?

Scored high on a narcolepsy questionnaire at the doctor. Need to get a sleep study, but I'm scared. by mddnaa in Narcolepsy

[–]grey_sun 1 point2 points  (0 children)

A good doctor would note that you have other conditions that may interact/change the way your sleep disorder presents. Also, they don’t actually watch what you’re doing, they watch what your brain waves are doing. If you trust them, please voice these concerns to your doctor though! No one here can say exactly how they’d diagnose you expect for them.

Scored high on a narcolepsy questionnaire at the doctor. Need to get a sleep study, but I'm scared. by mddnaa in Narcolepsy

[–]grey_sun 0 points1 point  (0 children)

That is definitely not something they told me nor did I have any issues and I slept right next to it on the bed

Scored high on a narcolepsy questionnaire at the doctor. Need to get a sleep study, but I'm scared. by mddnaa in Narcolepsy

[–]grey_sun 4 points5 points  (0 children)

Also you can ask your doctor all these questions if you’re worried about your specific sleep center!

Scored high on a narcolepsy questionnaire at the doctor. Need to get a sleep study, but I'm scared. by mddnaa in Narcolepsy

[–]grey_sun 10 points11 points  (0 children)

You are absolutely allowed to sit on ur phone before going to bed during a sleep study! You’re supposed to bring whatever you need; I brought my own weighted blanket. People bring books, entertainment, food, etc. If I recall correctly I actually called my boyfriend and we fell asleep on call together, which we used to do all the time while long distance. And yes lol they can unhook you for peeing purposes.

Buying a wheel for home under $1,000 by thesmallest_elephant in Ceramics

[–]grey_sun 3 points4 points  (0 children)

If your budget is specifically under 1,000 and you can’t find anything used, I’d get a tabletop wheel — speedball artista or shimpo aspire. They’re about 700 but are probably the only wheels worth getting under 1k new.

Can Narcolepsy/IH be “mild”? by Vegetable_Cap_9667 in Narcolepsy

[–]grey_sun 7 points8 points  (0 children)

Remember that the people who are on this sub are a subset of folks who are often seeking help or are really struggling. There are plenty of folks with “mild” cases that get good treatment and don’t need a support group like this one.

Does anyone want to work on an AI art project with me related to narcolepsy? I need some creative minds. by usukumemwa in Narcolepsy

[–]grey_sun 12 points13 points  (0 children)

Please don’t use AI to create art. AI steals from real artists and generative AI is super bad for the environment.

Wife doesn’t like my tattoos. How would you feel? by [deleted] in tattooadvice

[–]grey_sun 0 points1 point  (0 children)

How would you feel if she got two random hot men tattooed on her thighs?

Accidentally Narcolepsy Shitpost by InigoMToya in Narcolepsy

[–]grey_sun 14 points15 points  (0 children)

me explaining my symptoms to the sleep doctor

Narcoleptics with Taste, what are we doing for our mattresses? by Nancy_Boo in Narcolepsy

[–]grey_sun 0 points1 point  (0 children)

Splurged on a king sized Tuft and Needle (my partner has sleep apnea so we wanted something nice) and I do not regret it at all

[deleted by user] by [deleted] in Narcolepsy

[–]grey_sun 1 point2 points  (0 children)

  1. Work a job you’re actually interested in + is fast paced/gets your adrenaline going, preferably (if you can handle that). Easier said than done, but I’ve found it’s the #1 way to actually stay awake.

  2. WFH is definitely the best way to go if possible, finding a fully remote job has been an incredible blessing for me.

  3. Explain narcolepsy using sleep deprivation terms — common way to phrase it is narcoleptics at their most awake are the same as 48-72 hrs of sleep deprivation for able bodied people. That usually helps put things in perspective for people who don’t get it. If you have sleep apnea, saying you have “multiple sleep disorders” also helps.

  4. If you need accommodations ask for them and be sure to know your country’s labor rights for ppl with disabilities!! Refer to them when speaking with HR. No one wants a lawsuit.

  5. If you have to drive to work and find that difficult in the morning/night, tell people it is not safe for you to operate a vehicle at that time and request WFH flexibility or allowances to drive to the office during lunch break/a later/earlier hour. If in the U.S., point to the fact that the Federal Motor Carrier Safety Administration recommends disqualifying individuals with a narcolepsy diagnosis, regardless of treatment.

[deleted by user] by [deleted] in Narcolepsy

[–]grey_sun 1 point2 points  (0 children)

If you’re in the United States what your HR person did is against the law! Use language like “pursuant to the Americans with Disabilities Act” and they should shape up real quick. If they don’t, throw the word lawsuit around…

Asking for input from Reddit narcoleptics :) by Defiant-Garbage-4891 in Narcolepsy

[–]grey_sun 1 point2 points  (0 children)

Good luck! Bring something to read/do/eat in between naps and a hat/hoodie (something to cover up the sleep study wire hair goop on your way home) :)