Jump to content

ebonie

Members
  • Posts

    4
  • Joined

  • Last visited

ebonie's Achievements

Newbie

Newbie (1/14)

0

Reputation

  1. Happy experimenting, p8d! Glad the 5kg bag of rice entertained you -- I forget how weird it is until someone reminds me
  2. Here are a few (or 39) more examples of "You know you have POTS when ..." 1 When you live with your 85 year old grandfather, and you walk slower than him. You wonder who's going to get a walker first 2 When it takes 4 'sessions' to finish a single load of washing up, because standing up is way too exhausting 3 When you rather walk back and forth from the washing machine to the washing line a dozen times than stand still to hang up an entire load 4 When people invite me to go to the beach and I say "Is 10pm ok?" 5 When you add salt to your water, and pretend you're part of the cool kids' coffee club 6 When you drink beef broth and pretend you're drinking a delectable coffee 7 When you add salt to everything -- a lot of salt -- you know it's really toooooo much when even YOU taste it and spit it out thinking it's unpalatably salty 8 When you live alone and look at the dishwasher and think "How many dishes can one person create in one day? And those spoons?!" 9 When you add so much salt to your food that it kind of 'burns' (like chilli has both a taste and a hotness, salt also has a taste and a 'hotness'). Anyone experience that? 10 When you want to share your food, but you've already pre-salted it, and you advise others not to ... but they do anyway, and then they hate it "Too salty" (and you feel resentful because it feels like a waste of both good food and precious salt!) 11 When you spend $40 at the gourmet supermarket, just on salt 12 When you avoid eating vegetables, or drinking plain water, because it will dilute the electrolyte level 13 When you buy sparkling mineral water and the first dozen sips are great, but then it becomes the law of diminishing returns (salt level must reduce at the bottom?) 14 Before understanding POTS and magic salt: When you get dehydrated because you avoid drinking water because taking an iota of a sip too much will result in diluting the electrolytes 15 When your limbs get so 'tetchy' that you cannot do anything 16 When at the post office, you sit on the floor while waiting in line 17 When your 85 year old grandfather, who you used to live with, is more active that you 18 When you've eaten the same lunch and dinner every day for 7 years because it's the perfect combination (I realise now) of salt. It balances me every time. And I don't get bored. 19 When you get admitted to hospital and they take your blood pressure, and they say "120/80" and I go, "Woah, I must be under stress. That's really high (for me)" 20 When you carry two drink bottles around with different concentrations of salt, so you can "medicate" just perfectly 21 Spoon supply -- what is with that? I've seen it mentioned a few times, and I seem to suffer from a spoon supply malady too! 22 When you buy Murray River Salt (from southern Australia) which has a side benefit of helping Australia's land become less saline. Not only am I salinating my body, I'm desalinating my country. 23 When you sit cross-legged (Buddha style) everywhere you go (airports, at the hairdressers). When you prefer to sit cross-legged on the ground than sit on a chair. 24 When you can't decide whether sitting on a chair or standing is preferable. All you want to do is lie down or sit cross legged. I mean, who designed chairs?? 25 When the word "droppy" appears in your daily journal. "I could just drop to the ground right now" 26 When you feel droppy driving your car to the next suburb for a doctor's appointment. When you have micro-naps while driving. Seriously not good. 27 When you spend an entire summer lying on the couch, and you think of projects you can do lying down. I'm grateful for that period of my life -- my photo albums are now sorted. 28 When you look at a map to see how far you need to walk. Even though I'm very healthy (for me) at the moment, more than one block feels arduous. When someone says "It's only a 5-10 minute walk" I wonder how I can grab a cab. 29 When you go to the gym immediately after eating a meal, thinking that your blood sugar will be steady to get through a small, gentle workout ... but then you feel AWFUL. Later you realise it's your salt levels, not your sugar levels, that impact the awful-o-meter. 30 When you know you're ready to "move on" from your current health practitioner when you say to him "I've noticed a correlation between dysautonomia and salt. What do you know about salt and dysautonomia?" and he says "There's no correlation" and I say "Bye". 31 When you have a glass of water sitting on the bench, and you want to water a potplant, but you know it's probably salt water and therefore you waste the water down the sink so you don't kill your potplant 32 When you're in a public place and your salt levels have plummeted and you're feeling nauseous, so you go to the supermarket to buy some emergency supplies, but between walking and the lights and whatever, you're feeling more and more queasy ... you find a semi-quiet place in a food court at the train station, and you open up your food and dig in, saltiest food first. Normally this would fix you up, but you're "too far gone" and now you're sooo close to vomiting, and you do all your stopgap measures (lie down, cover your eyes from the lights, drink salt water shooters) and you're getting more and more nauseous, and you're saying "Just hang in there, body, we'll get there" and your body says "No more salt water, it's too diluted. Eat salt" so you start to eat the salt straight, and like a miracle drug, you start to feel better and better -- instantly -- like it's a drug going straight into your system. And you're amazed. Moments before it felt like you were about to go over the cliff's edge into a place of no return, but now you feel like recovery is in sight. You keep eating the salt and you're feeling normal. And then, out of the blue, you vomit. Straight into the bowl of food you were just eating. Even though you feel better after vomiting because of the endorphins pulsing through your system, you know the rest of the day will be a write-off if you don't recalibrate your salt levels. So you do what any normal (ha!) person would do. You ... (WARNING: Gross) nonchalantly push the vomited portion aside and keep eating the part that was untouched by the vomit. Then your salt levels become normal again. 33 When you try to find the perfect size mini spoon to scoop salt (like a teaspoon) into tiny bottle necks so it doesn't spill everywhere 34When you find salt flakes in weird places. On the kitchen bench. Under the car seat. Down your shirt. 35 When you make up a bottle of salt water on-the-go by buying a bottle of water and getting the salt container out of your bag (but spill some salt as you try to put it in the bottle) "Forgive me for spilling my salt" 36 When you've run out of salt stashes and need to make up a bottle of salt water, and go into a fish'n'chip shop and get a little sachet ... and then wonder why the water tastes fishy (those salt sachets absorb the fish shop smell) 37 When you notice your lips are salty after a meal, and you enjoy licking your lips 38 When you go to the beach and then later in the evening, notice your hair is salty and tastes deliicious! 39 When you carry a little card in your wallet that says "Hi please help me. I have a medical condition. My salt levels are very low. Can you give me 1 glass of water with 1 tsp of salt? Thank you" so that you don't have to explain it. And while you're waiting (what feels like an eternity) people either stare or "stand a safe distance" and you look disengaged with reality, burrowing deeper inside to keep your body ticking over. And then once you've downed the water and "come to" again, you're like a normal person -- total personality change!
  3. Hi Halffull, certainly relate to this. Occasionally in more extreme times, I have that depersonalisation where I feel like I'm surveying the world from afar, floating above reality. On a more day-to-day level, I get what I call "Michellin Man" or sometimes more like "Casper the Ghost". The 'edges 'of my body are really diffuse and floaty. I've discovered that if I have weights -- lift them, or put a weighted blanket on me -- then this helps me reintegrate into my body. Grounds me. I also find chewing helps me too.
  4. Hi p8d, I don't have any answers to your main question, but I can share my experience around the overstimulation from moving vehicle of tv zoom/pan. (My biggest bugbear are internet sites that have a moving banner at the top with advertisements/announcements. I feel sooo dizzy!!) Have you heard of SPD (sensory processing disorder)? It's where the body gets overstimulated or understimulated by sensory (senses) input. There are 8 senses (the regular 5 of sight, sound, taste, touch and smell, as well as 3 additional ones that aren't so common -- proprioception, interospection, vestibular system). The situation you're talking about sounds like vestibular -- the sense of balance -- and proprioception -- your body's understanding of where it is in space. For me when these systems are out of whack, I tend to get agitated by movement (like the internet moving banner, or tv pans, or a loud noise that my body is trying to locate). I also float outside my body sometimes -- don't feel like I'm in my body, but big like a Michellin man. A few things have helped me. (1) The awareness -- I'm not crazy or making it up, it's just my wacky biochemistry. (2) Having an appointment with an occupational therapist who specialises in sensory processing disorders for adults (although they're not super common, and I go to a pediatrician one and she's been awesome). (3) reading blogposts like https://www.rachel-schneider.com/about-spd and (4) the best solution I've found for my body is weight and/or compression -- wearing compression singlets, or using a weighted blanket or a weighted vest. While it doesn't work for everyone who has an SPD, that weightedness helps me (and many others) to calm our sensory system so we don't get overwhelmed by sensory input. I've even had a friend stand behind me and put her hands on my shoulders and push down. I've also been known to put a 5kg bag of rice on my head when I feel really dizzy. Really helped me. In my experience, I've found that mainstream doctors don't know a lot about SPD, but it's becoming more mainstream. When you find one that gets it, you know they're worth their salt (pardon the dysautonomia pun).
×
×
  • Create New...