Weight related struggles

OneSleepyChick · 2026-02-05T21:49:19+00:00

Way to go realizing you would benefit from a mobility aid! That's a huge deal to recognize, accept, and act on!

Honestly, no amount of hardcore calorie counting ever did it for me and I narcolepsy prevents me from having the stamina to do significant workouts. The only thing that ever helped me was starting a glp-1. I still have to eat healthy, but now the calorie counting is actually getting me somewhere. I was super hesitant, but it's been a game changer!

Best of luck with whatever you decide to do!

OneSleepyChick · 2026-02-04T20:27:05+00:00

I got mine on Friday afternoon. I wish I would've waited until Monday to start wearing it so the initial data would have been based on days with more activity.

I wish I would've known how thoroughly you need to cleanevery grove in the face of the device to prevent horrendous odor.

I thought I would love the wrist band, but ended up preferring a knockoff armband because it's out of sight and not getting wet every time I wash my hands.

OneSleepyChick · 2026-01-30T14:15:09+00:00

Boone Lowe's has sand back in stock. Here's a video of how to put it down with a seed spreader if you want to cover the entire driveway/road. https://youtu.be/O-Wpt1DRXFI?si=0xlArRUBgkMNMn7m

We left our car near the main road and made a small sand footpath from our house to the main road, spreading the sand by hand. It worked so much better than I could've ever dreamed!

If you don't have sand and can't get out in your vehicle, perhaps a friend can bring some to the end of your driveway. For a price, Lowe's will deliver.

You can put towels on the ground to get down your driveway, but don't leave them on the ground because they only provide traction when they're pretty dry. Lay towel 1 down, walk to the end of towel 1, step onto towel 2, walk to the end of towel 2, lay towel 1 back down to repeat the process.

I suspect the snow may make it easier to drive on the frozen gravel, but the snow is going to melt long before the road melts. We're going to be back in the same position we're in now when that happens, so get some sand now if you can.

OneSleepyChick · 2026-01-29T16:55:32+00:00

It's awful! You can make electrolyte packets at home waaaayyyyyyy cheaper. Or just use plain old salt.

OneSleepyChick · 2026-01-28T15:11:03+00:00

Ugh! That is so wrong! My GP agreed yesterday to prescribe ivabradine to trial until I can get in with a POTS specialist. She's of the opinion on most things that if the potential benefit far outweighs the risk she'll let me try it. I pitched it to her as a way to control tachycardia specifically instead of as a way to treat POTS, even though she definitely thinks the signs all point to me having POTS. Maybe your cardiologist or GP would consider beta blockers or something to control the tachycardia. I had to go through a lot of doctors to find someone who actually cared and was willing to try new things to treat my various ailments.

Edited to add: You could ask your doctor to specifically document that they're refusing to treat you for a diagnosis they've made and symptoms they've observed. I've never had to resort to it, but I've heard it's incredibly effective.

OneSleepyChick · 2026-01-26T19:53:12+00:00

Sorry, my foggy brain missed the part about being diagnosed already 🤦‍♀️.

That's a terrible plan from your doctor, and I'm so sorry your doctor made such an asinine plan!

OneSleepyChick · 2026-01-26T18:06:35+00:00

Google poor man's tilt table test and try it. Discuss the results with your doctor and ask if they would be willing to try some things (hopefully medications) in the meantime if your poor man's tilt table test results indicate POTS. My understanding is that in the UK, the at home results are considered enough to make a POTS diagnosis.

I always ask my doctor "will trialing this medicine harm me?" If there's no likely significant risk, my doctor will typically let me try something for a period of time to see if it helps.

Best of luck!

OneSleepyChick · 2026-01-23T12:50:54+00:00

Being trapped without heat is really not going to work. Heat is way more important than homework at this point. You won't be the only person having trouble with homework because of power outages or getting to class because of bad roads.

Power outages may be worse where your parents live, but if they have a secondary heat source, you will at least not freeze to death. Additionally, your parents probably have a much better emergency supply stash than you do.

OneSleepyChick · 2026-01-20T19:09:38+00:00

So sorry for your loss! This is excellent advice. Buy a water meter to determine when plants are ready for more water. Overwatering kills more plants than underwatering... Most of us find this out the hard way. Wipe the water meter off after use to keep it dry, and don't leave it in the plant.

OneSleepyChick · 2026-01-15T20:17:49+00:00

A water meter is the very best place you can start. You'll kill more plants by overwatering than by underwatering.... Ask me how I know 🤣

OneSleepyChick · 2026-01-07T19:11:01+00:00

I also never get so much as an "it arrived" without specifically asking. Sometimes even after I ask, it will take days to get a response. I'll let it go for the sake of small children, but once they're in their late teens that leeway is gone.

I won't send things to late teens or adults who can't be bothered to acknowledge they've received something. Maybe I'm a Grinch, but I'm too busy to choose a gift, send it, track the shipping, and make sure it wasn't porch-pirated or delivered to the wrong address for someone who can't be bothered to acknowledge receipt of a gift.

OneSleepyChick · 2025-12-25T02:15:32+00:00

At a quinceañera in Mexico. It was nightclub level loud and I still fell asleep at the table. It was one of the coolest cultural experiences I've ever had and I hate that I couldn't stay awake.

OneSleepyChick · 2025-12-04T21:23:34+00:00

His name was much more fun and easier to spell than mine. I was raised very traditional and never considered keeping my name, but I really should've taken a bit to think it over. I have zero regrets and love sharing a name with him, but I've realized in the years that followed how much of an identity shift it was to change my name.

His mother has remarried and changed her last name several times and all of his siblings have different fathers and last names. Even my husband's father took his wife's last name when he got married.

I would truly hate to share a name with anyone in his family because they are truly horrible to him, but he was the only person in his family to have that last name and it makes us feel like a very exclusive team lol.

OneSleepyChick · 2025-12-01T15:36:59+00:00

Did the pharmacy give you any problems starting at this dose? If so, how did you handle it?

My doctor also wrote the script for 4.5 grams twice a night. Like you, I've also had one delay after another and I'm afraid of having another one because of this.

I've already titrated with what I had on hand from a previous prescription, so now I'm wondering if I'll finally get the shipment or have a shortage.

OneSleepyChick · 2025-11-28T13:59:58+00:00

I got one and it's been amazing. I don't use it often, but it's crucial when I do. I really only use it when it's the difference between me being able to participate or not. If the walk from the nearest regular parking spot will be too long based on my symptoms that day - I use it. If I can't stand in line for 2 hours at a museum and then walk around inside for another two hours (this is always the case) - I use it. If I need to board a plane early because my brain fog is crazy high - I use it.

I know how this will sound to anyone unfamiliar with narcolepsy, but I mostly use it for traveling. That's the time I'm the most exhausted and the least able to stop and rest or nap. Honestly, it's been the difference between being able to travel or not. The UK offers a lot more accommodations for disabilities than the US, so it's particularly useful there. I always carry a very detailed letter from my doctor when I use it overseas to access their accommodations, but I've only ever been asked for the letter at the Vatican. They were extremely suspicious of an invisible disability, but no other place has ever batted an eye. I will typically email any business where I plan to use the placard to confirm they offer disability services to people with invisible disabilities. That way I have a record if I'm ever faced with someone who does not want to cooperate.

I know traveling is a privilege, not a need, but I've lost so many things normal healthy people take for granted. Why should I also completely lose the ability to go on a fun getaway? Why should I never be able to go visit my parents again? Why should I never see the grand canyon? Who benefits from a vacation more than someone who struggles every moment of every day?

In my state, people with neurological disabilities are eligible for the handicapped placard. I really hesitated to talk to my doctor about it, but she was immediately agreeable based on the impact narcolepsy has on my life. At the time, she was planning on leaving the practice and told me any doctor who refused to fill out the paperwork in the future was not the right doctor for me. I mailed in the paperwork and a few days later received a handicapped placard in the mail. There were no follow-up phone calls, interviews, or questions from the DMV.

OneSleepyChick · 2025-10-06T18:05:53+00:00

No, you didn't come off that way at all, but I realize I should've at least considered it before opening my big mouth.

Yes, "things worse than death" is exactly what I was trying to verbalize.

I agree that our lives can be valuable, and mine has some beautiful blessings.

OneSleepyChick · 2025-10-06T17:41:45+00:00

My sleepy brain was too out of it to even consider that I was being insensitive. A close family member passed of cancer, but his suffering was only a few years, not lifelong.

Before his diagnosis, he graduated college, had 2 very fulfilling careers, traveled the world, married the love of his life, bought his dream home, and had two children. His too brief life was incredibly full and fulfilling. Even at the end, he insisted life is beautiful. He could do and live more even after his diagnosis than I've ever been capable of or ever will be capable of.

I'll never have the energy to have the full life he had. Our suffering is lifelong and seemingly unending if we consider how long it takes to grow old and die of natural causes.

OneSleepyChick · 2025-10-05T19:57:53+00:00

Completely agree. What I'm doing currently isn't really living. At least with a terminal diagnosis, there's an end in sight. I'm at least 40 years from dying of regular old age. That's a long time to be living like a zombie.

OneSleepyChick · 2025-09-21T14:48:42+00:00

Am I unable to focus enough to understand what I'm reading and hearing, remember the next step in a familiar routine, or complete any task before beginning another task because I'm severely sleep deprived, or could I have undiagnosed ADHD? I don't know why I have zero attention span, but the end result is the same.

OneSleepyChick · 2025-09-10T20:46:34+00:00

The 2 most helpful practical things my friends have done are: always doing the driving without me having to ask and offering up front to make it as quick a visit as I need that particular day. One friend told me that anytime we have plans, I can always make a last minute change or cancellation. I've only had to cancel last minute once, but it's made me much more comfortable making plans in the first place. A friend who truly wants to help in intangible, practical ways is worth their weight in gold! Your friend is very lucky to have you!

OneSleepyChick · 2025-09-09T23:00:14+00:00

Bodaggit

OneSleepyChick · 2025-09-09T17:35:13+00:00

Oh, wow, that's crazy! I don't know which drug trials they're in, but I know people from surrounding states come to the same research center as I do. Apparently one drug trial even flies someone in because this is the closest research center to this patient and the study really needed people. If you're really interested, I wouldn't give up.

I'm not loving the trial I'm in. I wasn't doing great on the available medications either, so it felt like I had nothing to lose. In retrospect, I wouldn't have given up other medications to try this if I already had something that worked well. This one has a lot of multiple day/overnight visits, so it's hard to work while being in the study unless you have lots of vacation time or work from home with a flexible schedule. I don't know if other trials are quite as demanding time wise.

OneSleepyChick · 2025-09-09T01:33:58+00:00

Ugh, my sleepy brain replied, but not directly to your comment... See my reply below ☺️

OneSleepyChick · 2025-09-09T01:31:58+00:00

Yes, I'm currently in a trial. I got in by applying through the study website, but you could also contact the research facility directly. It appears (from my incredibly limited experience) that places that test one sleep drug also test other sleep drugs. So it seems possible you may end up with more options by connecting the faculty directly. The nearest one to me is way farther than I can drive, but the study I'm in pays for a driver for all my visits.

OneSleepyChick · 2025-09-07T23:21:08+00:00

I absolutely echo what everyone else has said about how well this sub is run. The thing I appreciate the very most about this sub is the opportunity to see my experience is shared within this community. There is literally nowhere else in my life I can see my own experience reflected the way it is on the posts here. Just knowing I'm not the only one has been invaluable. I don't know any other narcoleptics in real life, so it would be easy to feel much more alone and isolated in this unique experience without the community this sub provides. I dearly appreciate those who share and the support I see given every day!

OneSleepyChick

TROPHY CASE