#narcoleptic wizard

[gleefully-macabre]

My workplace wellness program is having a “steps” competition for the next 5.5 weeks (started Friday).

I have narcolepsy and sometimes am too exhausted to function even with 7-8 hours of sleep.

I also work remotely 80% of the week and own a treadmill. So I’ve decided to even up the competition .

Behold, my $25 treadmill desk!

Now I can do a lot of walking on days that I can (2.5mph is slow enough to still work) to supplement the days I don’t have the spoons.

I could also just not participate, but I am actually trying to exercise more. Plus participation in the program could mean an additional week of PTO and other incentives, and I’m not going to miss out on short term rewards for long term goals I’m working on anyway.

No matter how much it reminds me of The Wrong Station ep95 “Productivity”.

[gleefully-macabre]

So apparently fermented foods can stimulate the production of orexin, the lack of which is linked to cataplexy.

I’m figuring out miso soup (with homemade veggie stock mix, no added salt; I don’t care for dashi) and natto (I hear ume vinegar is a good topping).

If nothing else, I can down a cup of miso broth (1 tbsp miso to 1 cup water and 1 tsp stock mix; broth should be no hotter than 114F when adding miso) and get some benefit that way.

[gleefully-macabre]

Sandman - Human AU: Dream has narcolepsy

Dream is Like That because he is, literally, always tired; thus crabby. He’s a workaholic because keeping busy is the most effective way to stay awake. He barely eats because his meds suppress his appetite. He’s emotionally shutdown to prevent cataplexy.

The end.

[gleefully-macabre]

Got through yesterday without taking a nap. Now to see if I can do that 2 days in a row.

[gleefully-macabre]

Lowering my stimulant dosage seems to be working out well so far. I skipped my sleeping meds to clear my system the last two nights, and got a frankly surprising amount of sleep! 5-6 hours each night, which for me is a lot.

I didn’t even have a cataplexy episode yesterday, and other times I skipped the sleep meds, I’d be cataplexying all day at the drop of a hat, and need naps throughout the day. I actually had energy and alertness. Did need to nap a bit, but that’s normal.

Not going to skip my sleep meds for more than a detox. My sleep pattern was all over the place, waking up multiple times during the night, and very little REM. So still need them.

But it’s nice not being a zombie for a change.

[gleefully-macabre]

Saw my neurologist today. Actually a new doc since the last one retired. Getting a lower dose of my stimulants, which will hopefully let me sleep better.

I figure more sleep means less stimulants needed to stay awake during the day.

[gleefully-macabre]

Hummus may be joining my menu as a pre-bedtime snack, if my hypothesis about a high fat snack and slower absorption of my sleeping meds proves correct. Early experimentation has shown promise, but damn, this stuff has way too much sodium!

I’d like to make my own, but not sure it’s worth getting a food processor. And the Vitamix food processor attachment isn’t compatible with our model.

[gleefully-macabre]

Seeing my neurologist today. Luckily their office is nearby. I might have to walk it.

I’m exhausted. What’s worse, if I laid down right now, I probably wouldn’t be able to fall asleep. The meds that are supposed to force me into sleep also force me awake during the day. Not focused or functional, just awake.

And now for some reason my wrist hurts.