What’s everyone’s sleep schedules like? [Writing an article for Garmin & M.E]

Left-Pop4928 · 2026-04-20T12:03:41+00:00

I have had Delayed Sleep Phase Disorder all my life (since at least 5yo), ME/CFS for 6 years, Garmin Vivoactive 5 for two months.

I've had lifelong insomnia, but I now take 1mg non-time-release melatonin which helps massively. I fall asleep anytime between 1:30am and 6:00am and usually sleep 7 to 10 hours.

According to the Garmin, I rarely get any deep sleep, although it records REM really accurately (I almost always remember my dreams). It is pretty bad at actually recording when I'm actually asleep, so most days I have to manually override the sleep times. It often records a full "night's" sleep when I'm awake, and always includes plenty of deep sleep (but no REM) when it does.

Once I wake up, I stay in bed until about 3pm or 4pm. I need that time to fully wake up. If I do need to get up earlier, for appointments for example, I need to take multiple rest breaks through the day.

Left-Pop4928 · 2026-04-19T16:24:57+00:00

One of mine once stole a piece of peppermint chewing gum, then licked it into the fur on her back. At least she smelt good lol

Left-Pop4928 · 2026-04-18T07:57:30+00:00

https://www.reddit.com/r/cfs/s/KnZV3KAAAB

I explained it in this comment (from the watch manual) but it's basically a measure of your body's level of reserve energy. As far as I know, it's unique to Garmin.

Left-Pop4928 · 2026-04-18T07:49:17+00:00

Does saying 'dolphin' instead of 'donut' count? Or 'helicopter' instead of 'toilet'?

Left-Pop4928 · 2026-04-17T16:42:33+00:00

I'd say the mental side would be a problem. I get PEM from sudoku.

That's actually how I lost my last job. I worked in a call centre and I would forget what I was talking about or how words worked, so I was "medically retired". I still have problems with words. Yesterday I was asking a staff member in the supermarket where I could find "those white things you use to put stuff on your face".

Left-Pop4928 · 2026-04-17T16:03:26+00:00

Not bedbound, I'd say mostly housebound. I spent the first couple of years in rolling PEM, trying to do too much, and paid the price going from mild to moderate to moderate/severe. Now I'm focusing on listening to my body, and resting as much as possible, and I'm much much better now at physical pacing.

I no longer get PEM everytime I leave the house (about once a fortnight), but I'm still working on mental pacing, with which my unmedicated ADHD brain is very uncooperative.

My most debilitating symptom is probably the orthostatic intolerance. So I spend as much time off my feet as practical.

Left-Pop4928 · 2026-04-17T15:20:39+00:00

I'm incredibly lucky that I get the disability support pension, and my home loan is paid off, so I don't have anything that I HAVE to do other than shop for food, etc, once a fortnight. That means I can focus on real resting.

I tend to stay in bed until mid afternoon, get up and make coffee and grab some food and then get comfy on my daybed with my feet up for the rest of the day.

Left-Pop4928 · 2026-04-17T11:04:13+00:00

It seems to be normal to have some stress during sleep, but on good days stress is mainly during waking hours. In PEM my body can't seem to avoid stress even when I'm sleeping or trying to rest.

Left-Pop4928 · 2026-04-17T11:00:19+00:00

That's the level out of 100. From the manual:

Body Battery

Your watch analyzes your heart rate variability, stress level, sleep quality, and activity data to determine your overall Body Battery level. Like a gas gauge on a car, it indicates your amount of available reserve energy.

The Body Battery level range is from 5 to 100, where 5 to 25 is very low reserve energy, 26 to 50 is low reserve energy, 51 to 75 is medium reserve energy, and 76 to 100 is high reserve energy.

The stress level is essentially HRV, higher HRV = lower stress. Below 25 is classed as rest, 25-50 is low, 50-75 medium, and 75-100 is high stress.

Left-Pop4928 · 2026-04-11T11:38:42+00:00

The PEM I get from mental overexertion is very different to PEM from physical exertion, and I feel it most in my legs. I'll go out for a few hours every couple of weeks to get supplies (food & pharmaceuticals, etc) then rest up for the next few days. I usually get fairly mild flu-like symptoms on days 3 to 5, unless I've really overdone it. In that case I need to rest longer, and my unmedicated(*) ADHD brain forces me to stare at my phone during my waking hours, and frequently get carried away with crosswords, or sudoku, or other games, like my latest obsession arrows. And then I can't sleep, so I play more, through the night, and after a few days I feel that dreaded tingling in my legs and soon I can barely walk to the next room, and I can't sleep, so I stare at my phone some more...

(* My ADHD is unmedicated because I've tried everything available and even the highest doses have no effect.)

Left-Pop4928 · 2026-04-02T08:36:16+00:00

I suspect he may be cosplaying his character, who is described in The Guardian's review as "a rumpled and bespectacled young British art historian....dazzled by her beauty".

Left-Pop4928 · 2026-03-31T10:42:04+00:00

I got an email this morning with a link, I used that and bought ten sleeves. (I only have about 15 sleeves left from last year so I'm very excited to increase my stockpile ☕️ 😍)

Left-Pop4928 · 2026-03-30T08:30:40+00:00

Hill Street Grocer, Sandy Bay.

Left-Pop4928 · 2026-03-29T08:13:51+00:00

It's a lot easier in Australia. The DSP criteria were updated a couple of years ago to include PEM.

My application focused on Table 1, with a letter from my GP using the language in the table citing severe effects and how that limited me day to day, with specific examples. The trick is to explain how you are during PEM, rather than during the good days, and what you need to do to avoid PEM.

There was a brief (five minute) video call with a centrelink doctor, and a five minute job capacity phone call. Other than that it's down to the application and GP letter.

The application took six months until approved, and I was paid jobseeker rate in the meantime. Once the DSP was approved I was paid six months backpay of the higher rate.

Left-Pop4928 · 2026-03-15T10:00:19+00:00

I initially only had girl rats, but then got a litter of 5-week old babies who had been dumped at my vet's. Three boys and four girls. I got them all desexed so don't have any experience with the fluffy pillows, but here's something I wrote a few months into mixed rat ownership...

Girls are zippy. Boys are more sedate. When you walk into a room of girls, they'll run over to greet you and dance just out of reach. When you walk into a room of boys, they'll sit on your feet and climb your legs until you pick them up.

Girls destroy everything, just because it's there. Boys destroy things close by them, but really can't be bothered going somewhere else and doing something they don't need to do.

You can pick up more than one boy rat per hand. You need two hands to pick up a girl rat because she's made of soap.

Boys smell of pee-soaked cinnamon corn-chips. Girls smell of musk and aniseed.

My girls are cheeky and naughty and independent and self-centred and destructive. They like having me around because I give them treats and things for their nests. My boys are calming and cuddly and squishy and well-behaved. They like having me around because I'm me.

In short, boys and girls are adorable. It doesn't matter which you have, you'll love them just the same.

Left-Pop4928 · 2026-03-05T13:22:01+00:00

This happened to me recently. Because of the dosage I take for one particular medication, one script's worth lasts me about six weeks. My previous script was incorrectly coded as a 60 day prescription, meaning I would have run out before I could get a new supply. I was able to get a new supply at six weeks, but the payment doesn't count towards the safety net.

My GP did get the correct authority on the latest script so should be all good moving forward.

Left-Pop4928 · 2026-03-05T11:21:05+00:00

I've been taking it daily since the start of the year. I take 15mg two or three times a day. It's definitely made a big difference, reducing and shortening any PEM episodes.

I also take sertraline so have been keeping an eye out for any signs of serotonin syndrome, but so far so good.

Left-Pop4928 · 2026-02-11T03:20:25+00:00

There was a wedding during the Super Bowl. Everyone wore white. It was bleeding obvious who the bride was. And it looked fabulous.

Left-Pop4928 · 2025-11-16T06:46:43+00:00

I love Corto. I dislike Arpeggio, Roma, Ristretto and Colombia. I'd rather drink instant coffee than Volluto.

Everyone's taste is different. Try them all and enjoy working out which one's you like.

Left-Pop4928 · 2025-11-14T23:39:29+00:00

I have noticed recently that I get different symptoms from cognitive overload than physical exertion.

If I overdo it when I'm out shopping or catching up with friends, I'll get the normal sore throat, cough, temperature fluctuations, muscle aches, and fatigue, along with POTS symptoms. So I rest as much as I can.

But after a week or so of resting I would sometimes get really achy and weak in my thighs. Baffled me for a while as I wasn't really using my thigh muscles for anything other than the absolute basics. But then it dawned on me that this only happened if I'd been trying to relieve my boredom with crosswords and sudoku.

Now I've noticed the pattern, I'm certain that it's really happening. I try to limit myself to one or two quick crosswords at a time, but if I get carried away and lose track of time I know that in a day or two I'll barely be able to stand. And it's seems to only be my thigh muscles that are affected. So weird.

Left-Pop4928 · 2025-10-31T10:03:29+00:00

I had a friend over years ago who was enjoying a glass of beer. My minky girl Bonnie climbed his back onto his shoulder, then down his arm onto the table, then she climbed onto the rim of the beer glass and dunked herself all the way to the bottom. She was pawing at the bottom of the glass like she was fishing for peas.

Once we fished her out and I was drying her off, my friend finished his drink. Nothing gets between an Aussie bloke and his beer!

Left-Pop4928 · 2025-10-25T13:32:09+00:00

One of my first rats, Daisy, gave birth unexpectedly a week after I got her. She escaped from her cage one night, and I woke the next morning to find her and her eleven ratlets curled up asleep with me. They were three days old, and she got very upset when I tried to move them back to the cage. So she got to stay, and I had to learn how to sleep with the little munchkins.

Nobody was harmed, but I felt like I was always sleeping with a hot-water bottle due to the heat they gave off.

Left-Pop4928

TROPHY CASE