Posts tagged pots
@sleaterkinnie-deactivated202412
can they make a being hydrated that doesn't have you pissing at emergency levels every 34 minutes
Just a note that actually salt intake is just as important for hydration. Salt is what allows you to retain water, and the more water you drink daily the more sodium gets washed out of your system. If you are drinking and drinking and just pissing it out you need to eat more salt. If your mouth is dry no matter how much you drink then you are actually low on sodium and you need to eat something salty right now.
Trans girls on hormones- this is even MORE true for you if you're on blockers. Spiro's a diuretic, and you will retain less water and sodium as a result. This is why you're craving pickles and salt and vinegar chips and such.
my summertime beloveds
I have pots syndrome and this is my whole existence in addition to weird heart stuff. Anyway, all of the above: yes.
I have also found pretty inexpensive (like $2.99 for a pack of 6) electrolyte packets you mix with water at Aldi (in the US, no idea if their selection is the same elsewhere in the world) and while it may not be the most comparable to other stuff, it feels (physically) like it works for me. So, a cheap option if you need it. I’ve tried the strawberry and passion fruit flavors and they remind me of drinking a (very slightly salty) Capri Sun. I really like Liquid IV’s flavors but they are pricey and I’m poor, so we call the Aldi ones Fake IVs and keep a bunch around. Same form factor, ok flavors, does the job.
In a pinch when I have nothing fancy on hand though I’ve been known to crank a bunch of sea salt into some water with lemon or lime juice and mix it up. It is extraordinarily salty, like your lemon or lime spent a day bobbing in the ocean. It works though.
Gatorade is my summer liquid of choice because there are a lot of flavors and I can stuff a bunch of them in the fridge and they’re always there and cold and I don’t have to make anything fiddly when I’m melting. I think the sodium levels are lower than other electrolytes (I am very possibly wrong) so it’s not the greatest tactic for me but it works.
TLDR: electrolytes. They’re important.
showering:
pros: you get to feel clean. you get non greasy hair, non oily feeling skin, it just in general makes you feel better, more energised, refreshed.
cons: there are so many steps. oh my god are there so many steps. before getting into the shower there are steps. during the shower there are steps. and once youve gotten out of the shower? guess what!!! more fucking steps!!!!!!!! UGHHHH
All of this plus my bones and joints are hurty and by the time I’m comfortable and relaxed under the water my body has decided it is Too Hot And Too Much and my heart rate goes haywire and I need help getting out so I don’t fall over and then my energy is shot for the rest of the day, but at least I’m clean. I have to strategically plan shower time nowadays. I could probably take colder showers, but also, no. Heat nice for sore body, bad for heart rate. There’s no winning solution.
Anyway, that’s POTS.
how ironic is it that october is dysautonomia awareness month when a lot of us are dealing with the october slide. like, yes, be aware of us during the time that our symptoms are flaring the most /lh
long form stressed out thoughts
Because it’s never just one bad thing!
A question, ideally for POTS folks but also maybe for people into nutrition or something. Once upon a time I’d have posted this to Twitter but I don’t feel like I’d get genuine answers there anymore.
I’m looking for an iOS app that ideally lets me do like 3 things:
- search foods so I can track what I’ve eaten
- display the amount of sodium in that food
- (somewhat optionally) let me check my running tally of sodium for the day from my Apple Watch. (It’s an elder one but generally works fine with most things still.)
What I do not need:
- anything requiring subscription. I can’t afford it.
- other nutrients, though I don’t care if they’re there and I can ignore them
- “diet advice” or other judgement on what I’m eating
- weight loss suggestions, as I’m not trying to do that
I literally just want to keep a running count of where I’m at in sodium for the day to help control my POTS because my body works backwards and more salt makes everything run better. I would rather not have to stop and search up every food and then transcribe the sodium listing into Apple health manually. I had a shortcut for this, but it still requires a lot of extra searching and reading packaging and guesswork sometimes, so it’s not much better.
I had been using Foodnoms up until today, when they took away the Apple Watch complication I’d been calling my “saltometer” and generally making the whole thing useless to me. It was really invaluable to be able to glance at a little ring and be like “oh I’m about half my goal for today, doing good.”
Does this exist?? I’ve been scouring the App Store and can’t quite find what I need. Maybe I’m just picky. Everything’s a little too judgy or focused on weight loss which are not concerns for me.
Dear fellow folks with POTS,
Despite doing all the salt-consuming and compression-socks-wearing I can handle, which helps, I still find that I burn out very early in the day. I keep playing around with caffeine and hydration and salt and naps and whatever, but I haven’t found the right mix of fixes yet. As it is, my days are extremely short and I am very frustrated.
Does anyone out there have advice on keeping your energy up with this type of condition? Feeling like someone hit my power button every afternoon is the absolute worst.
Yours truly,
Bug
I’ve been consuming mad amounts of salt and hydrating like crazy for the past few days and I cannot overstate how much more normal I’ve been feeling, it’s absolutely wild. I mean, I don’t feel 100% but I also don’t feel like I’m going to die every time I stand up, either!
I also got my fancy robot-legs knee braces and between those and training to win the salt eating contest, I went out for a walk and I felt really good. Might have overdone it a little, but still!
The human body is a weird disaster.
Personal, terrible body updates, general venting (it’s a CW and a blog title!)
Had another round of PT today, oof. We are into working on my arms and shoulders finally. My hands have improved significantly since starting all this, which is great, but the rest of my body is having a rougher go with it. It’s interesting to be able to pinpoint the really bad parts of my joints, and also observe how the rest of my body has been compensating to make up for the deficit. Also watching while the physio pokes part of my shoulder and the complete opposite side of my body reacts to try and carry it is pretty wild. Biology and physiology are amazing and frustrating all at once! But boy did I ever need the world’s longest nap after that today.
At the moment we’re going with “it’s probably some flavor of Ehlers-Danlos syndrome, with something else like POTS mixed in for extra spice,” so that’s. Ehh. But at least it’s a direction. Still, a heap of tests in my future as we find out how far the rabbit hole goes down. I get to talk to someone about the potential POTS aspect tomorrow, which has me anxious and also hopeful because at least information gives me the power to do something about any of this. It’s worrying because it’s heart related stuff, but also it seems like the kind of thing that can be managed so at least there’s that. I’ve been using my aging Apple Watch to keep tabs with the Heartwatch app for a few weeks and the data is pretty stunning. Highly recommend that if you’re in a situation like mine where you’re just looking for patterns, it’s about $5, or Tachymon which is free but a little more limited.
On the plus side, to help out with my lower body, I’m getting some sweet knee braces, which I am super excited about. Practically robot legs! Being able to walk places with confidence my legs won’t fall apart under me! Wow! It’s gonna be great. I’ve had a really bad time over the past year with mobility, so I’m really hoping this helps a bit. I’ve got plans to start going on short Pokémon Go walks when the weather warms up as a physical therapy supplement. It’s wild to me that like 10 years ago I was able to just push through this kind of pain and run a marathon, because I just assumed this is how everyone always felt doing physical activity and that was why marathons are considered hard. (It isn’t and, it isn’t.) I doubt I’ll ever be able to do that again, but maybe I can handle like a 5k or something someday.
Since my hands have been better, I’ve been getting in some comic work lately and it feels really good. I’m pretty excited about the pages I’m currently on and just. Really happy about making art, and liking the art I’m making. I’m close to having a second page totally done and I’ve got a good start on a third. I’m going to try and get at least 5 pages done before I commit to uploading, so I’ve got some buffer room, but the more I can get done, the better. I’ve spent hours on the current one and I can no longer tell if it’s due to my process or just being out of practice while my hands were improving. Either way, progress.
Anyway, just blabbing about health stuff because I’m anxious and it makes me feel better, and also I can look at this later when I’m not feeling great and recognize that it isn’t like that all the time. And comic updates stuff, because I want to draw so bad, and maybe people are interested in why I’ve been so slow. I feel kind of weird talking about it, but also nobody talks about this stuff plainly and we probably should. Oh well.
Update, minor.
Turns out I do indeed have the POTS, how exciting, I guess! The solution is eat an actual metric ton of salt and drink more water. Which is fine because I love salty things, and now I wonder if that’s why I love salty things. I feel hopeful!
The science behind it is pretty simple but interesting. Something something consuming a ton of salt changes the concentration gradient (I think that’s the term?) in your blood so more water gets pulled in and you have more blood volume to move around. Because otherwise there isn’t enough which makes you dizzy and wobbly. Science!
I guess we’ll see how it all goes but I’m just glad I have an explanation that has direction on how to handle it and that I know for sure it isn’t a bigger, worse, or deadlier problem.