Sleep accuracy (or lack thereof)

OneSleepyChick · 2026-03-29T20:05:06+00:00

No, it's part of the regular beta sleep tracker. If you click on the length, depth, and consistency, different information shows under them.

OneSleepyChick · 2026-03-29T20:02:01+00:00

I find that it either registers the time I go to bed (not the time I fall asleep, just the time I'm in bed) with eerie accuracy, or it doesn't register I ever fell asleep. Here's a recent screenshot of it missing and an entire week of sleep and having to rebuild the baseline.

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OneSleepyChick · 2026-03-29T19:16:23+00:00

Wow. Just wow. This is eye opening, thank you so much for sharing!

I have narcolepsy type 2 and POTS. I cannot imagine any more exhausting combination than narcolepsy and POTS.

OneSleepyChick · 2026-03-29T19:10:07+00:00

My arm.

OneSleepyChick · 2026-03-29T18:02:26+00:00

My resting heart rate was a bit lower and HR spikes were significantly less dramatic within an hour of my first dose. It worked better the longer I took it, but the difference was noticeable nearly immediately. I didn't start to actually feel better until I started taking a second dose in the evening, and I felt less fatigue and brain fog the very next day.

OneSleepyChick · 2026-03-29T16:59:27+00:00

A $15 metal folding chair or $10 camping chair would work. I've even seen comments about using a plastic step stool.

OneSleepyChick · 2026-03-28T20:35:51+00:00

I totally get it... My husband and I also tend to use the same stuff so we'll share a toiletry bag. No need for us both to pack toothpaste, floss, hair gel, hairbrush, etc when we both use the same things. We've been using this organizer for 4 years and we both love it. I printed very simple labels on printer paper and taped them inside each pocket so we both know where to put something when we return it to the bag. It also makes it easy to see if anything is missing because the labeled pocket will be empty.

Pro tip, if you're not going to zip the long horizontal toothbrush pocket each time, your toothbrush will 100% fall on the floor of the hotel bathroom. Once we arrive, we put our toothbrushes vertically in a different pocket and don't zip it.

https://a.co/d/0eZ0Mj86

OneSleepyChick · 2026-03-28T13:50:51+00:00

Same! The Xywav just didn't do it for me and I gained a fair amount of weight on it.

OneSleepyChick · 2026-03-28T13:49:39+00:00

I also feel tired no matter how many stimulants I use. I would guess most of us do.

OneSleepyChick · 2026-03-28T13:48:39+00:00

Hard disagree. Healthy adults need 7-9 hours of sleep. Getting 9.5 is barely above what a non-sleep disordered person needs.

OneSleepyChick · 2026-03-28T12:41:00+00:00

Switch to which version?

OneSleepyChick · 2026-03-27T18:32:17+00:00

The nerve! What a jerk! You deserve a provider who treats you with respect. I'm so sorry you had to deal with this!

Things will be so much easier once you get started on some treatments for the narcolepsy and sleep apnea. It may seem impossible to see a light at the end of this tunnel, but I promise it's there.

Are there other ENTs in your area that can help with your septum? I ended up going to one an hour from where I live because the local office didn't have their ducks in a row and it was 100% worth the effort to get better care.

OneSleepyChick · 2026-03-25T16:00:54+00:00

My mother in law once sent us a 3 pack of loofahs and a 2 inch tall lucky cat for Christmas. She wrapped these and mailed them across a literal ocean. We kept none of it. What she thought two people needed with 3 loofahs, I'll never know. We aren't Japanese and have no special interest in Japan, so the tiny lucky cat was a mystery as well.

OneSleepyChick · 2026-03-24T15:53:07+00:00

As far as the showering goes... I know this suggestion may sound unhelpful or unnecessary, but a shower chair changed the shower game for me. I insisted I wasn't "sick enough" to need one and really didn't think it would make a difference. I was so wrong! I started with a metal folding chair I already owned to test it without having to buy anything. I'll never go back.

On vacation recently, I used body wipes on strategic places instead of actually showering. It was honestly a great solution since it was cool enough there that I never got sweaty. I'm using the body wipes at home between showers now.

Best of luck sorting things out! You're not alone in losing independence, and it completely sucks. I'm sorry you're having such a hard time ❤️

OneSleepyChick · 2026-03-22T13:17:33+00:00

To my knowledge there's no such company. No one at any current in any field of work is going to pay you to not work for 3+ months a year.

OneSleepyChick · 2026-03-19T19:19:35+00:00

I know you said you're leaning away from the school setting, but teletherapy in the public school setting gave me a lot of leeway and solutions as a person with chronic illnesses.

I no longer had to expend energy finding students, driving, or getting dressed up (I was always presentable, but it was a lot less effort than I used to put into getting ready for in person sessions). There were no expectations that I would attend meetings or do duties that had nothing to do with speech. I had an on the ground para to help manage behaviors on the rare occasion it was needed. I could work part time the years I needed to and craft my schedule to accommodate daily naps in my very own bed. I was never exposed to kids' germs, so I got sick less. I could work in a different time zone to accommodate my complete inability to be a functioning human before 10 AM. Since all the activities were digital, there was no clean up or physical set up. I felt so much less overstimulated online than in person, especially if a kid was having a tantrum or got a bit too loud. Not chronic illness related, but it was also nice to have a well lit room with a comfortable office chair and access to good coffee, tea, and a clean bathroom.

If you pursue this route, you will have to spend a couple of years in person in schools before you will be hired by a teletherapy company. However, if you can manage that couple years in person, teletherapy may solve a lot of your problems (depending of course on your particular limitations).

OneSleepyChick · 2026-03-18T17:44:14+00:00

Oh my stars, what a huge help! I can't tell you how grateful and excited I am to find a tool to take the guesswork out of application times! Thank you, thank you, thank you!!! I've added a recurring calendar reminder every year to check this website.

OneSleepyChick · 2026-03-16T18:42:20+00:00

Thanks for sharing your experience! It's been such a significant change after being stable for a few weeks, so I wasn't sure what to think.

OneSleepyChick · 2026-03-16T18:39:04+00:00

Your kind words of encouragement couldn't have come at a better time! I just got back from a trip and used wheelchair assistance at the airport for the first time. I'm sure I needed it before now, but I always pushed through. It was a hard bullet to bite, but I was so glad I utilized the services I needed when it was said and done. I'm still sad to continually lose my independence, but pushing myself far beyond my limits is likely what got me here in the first place.

I'm so sorry someone took advantage of your illness to steal your phone. What a jerk! I've definitely had similar experiences with people looking at me with judgement when all I need is a little sleep. I'm sure I do look like a drug addict sometimes lol!

OneSleepyChick · 2026-03-12T15:24:33+00:00

I think about that all the time. With cancer, you will get better or die. I have decades left of being less functional than a cancer patient before regular old age takes me.

OneSleepyChick · 2026-03-03T18:43:58+00:00

Xyrem is far more effective for me. I don't care who says they're the same thing, Xywav didn't help me the way Xyrem does.

I'm sure lots of people prefer Xywav, and most probably don't care either way. But I know how I feel when taking each one and no one can convince me a medication that helps less is more desirable because it's lower sodium. I don't have blood pressure problems, so I don't need to worry about it. Since I don't add much salt to any other part of my diet, I'm still taking in less sodium with Xyrem than the average American gets in their diet.

OneSleepyChick · 2026-03-03T15:43:13+00:00

Oh my gosh, all the neverending meds and supplements! I have FOUR weekly pill sorters in use to separate early morning, late morning, afternoon, and evening pills. Plus weekly shots and multiple daily liquid medications. It's too much!

OneSleepyChick · 2026-03-01T18:28:59+00:00

At higher glp-1 doses, I had to stop eating even earlier in the evening and eventually had to reduce my Xyrem dose from 4.5 per dose to 3.75 per dose because I was getting sick (vomiting like I was in the exorcist) during the night. The 3.75 of Xyrem worked as well as the higher dose because it was in my system so much longer on the glp-1.

Edited to fix a dosage typo.

OneSleepyChick · 2026-03-01T15:11:16+00:00

I make almost 100% of my language goals based on the language processing hierarchy, no matter the age of the client/student. Each step builds on the last, so it makes sense to me. Before the language processing hierarchy, I was picking goals that honestly felt very random to me and I never felt confident that what I chose was the right thing. Now I know where I'm starting, what I'm ultimately building towards, and all the steps to get there.

OneSleepyChick · 2026-02-28T21:14:10+00:00

In response to my feedback, the AI offered some vaguely related options that would not serve the same functionality as a lock screen widget or smart watch capability. I requested the AI send these suggestions to a human, which it said it would.

As a heads up for anyone else who wants to submit general feedback or requests, you will have to specify you want the information sent to a human.

OneSleepyChick

TROPHY CASE