AmberK Posted June 20, 2012 Report Posted June 20, 2012 I thought it might be helpful to share each of our useful tips on managing day to day life with POTS or POTS-type illnesses. These are my helpful tips that I've found useful over the years...* washing line coat hanger hooks to hang stuff on the line without having to stand for long (if anyone isn't sure what I mean, just ask and I will provide links)* knee pads to get around the house on bad days without killing my knees*memory foam kneeler, to do the washing up or those other usual standing tasks, without having to stand.*grab rails around the house for those sudden dizzy spells*microwave steamers, pasta cookers, egg boilers, etc to cook things more safely when dizzy than using the cooker or hobThere's just a few to start us off, please all add your own, as I'm sure they'll be of some help to everyone Quote
Wendy C. Posted June 20, 2012 Report Posted June 20, 2012 Good idea!My tips are:-leave the bathroom door open with a small fan blowing into the room during my shower and all of the time afterwards when I am getting ready-sit down on a low barstool to dry my hair and brush my teeth, alternating putting each foot up on the counter when I feel pooling begin-lowered my home office chair to its lowest setting, so I can sit on a leg or cross my legs without hitting the keyboard tray when I feel the pooling begin-wear wedge high heels, even around the house, if the compression stockings aren't strong enough at certain times of day-use my iPad more than my PC, so I can recline or sit cross-legged on the floor if needed-put items at the top or bottom of the stairs that need to go up or down, so I can take multiple things with me at a time and minimize the number of times I go up and down the stairs-always wear yoga pants or shorts or dresses, to avoid the tightness when the abdominal pooling occurs (I've noticed that I have real discomfort with jeans if I am sitting down)-don't worry about answering the phone if I am sitting down, it is too hard to get up quickly and run to the other room, so I just check the caller ID or voicemail later on-most importantly - I keep an eye on the clock and take my meds and supplements on a regular schedule, so I do not get behind and suffer from it (Midodrine, salt tabs and magnesium are the 3 that I can FEEL if I am late with a dose) Quote
AmberK Posted June 20, 2012 Author Report Posted June 20, 2012 Thanks for the reply, Wendy, and for the helpful tips. Could you please explain this one in a little more depth: "-wear wedge high heels, even around the house, if the compression stockings aren't strong enough at certain times of day". I always tend to avoid any heels, as assumed they would make me feel less steady and worsen the dizziness. Do heels actually help to stop pooling? If so, what's the process that causes them to help? I would be fascinated to hear more about this if you wouldn't mind sharing.In the meantime, I'd also love to hear more tips from anyone else! Quote
lgtaylor100 Posted June 20, 2012 Report Posted June 20, 2012 That is really interested about the heels. I am dysfunctional pretty much all of the time but went to a wedding Saturday night and wore heels and I felt okay. (or maybe it was the cold, cold room). Quote
Wendy C. Posted June 21, 2012 Report Posted June 21, 2012 Hi AmberK,I think the reason they help is because they make your calf muscles work the whole time you are standing still, so that encourages blood flow and would, in theory, discourage pooling. Also, you have to use your core/abdominal muscles a little more for balance, so that might reduce abdominal pooling as well. (a guess, no proof) I just discovered it by chance, kind of like lgail mentioned, and noticed my legs feel better in heels than in flats. I am 5'9" so I am not typically a wearer of heels, but hey, whatever works! I prefer to be barefoot at home, but when I go out, sometimes I can take off my compression hose and do okay if I have on heels and some abdominal compression. I did a quick Google search just now and found this article that explains how heels are good for the calf muscles:http://voices.yahoo.com/good-news-high-heels-they-build-muscle-484352.htmlOf course, there are plenty of articles that talk about how heels are bad for you, but that seems to be for those who wear them constantly and wear spikes, not wedges.Oh, I did mention this info to my Electrophysiologist and she said something to the effect of, "oh, that makes sense."I hope that helps.Wendy Quote
peregrine Posted June 21, 2012 Report Posted June 21, 2012 Here are mine...- Make sure when I leave the house I have everything topped up and ready to go (cane, folding stool, full water bottle, full bag of goldfish, meds)- Blackout curtain in the bedroom for summer so I can sleep in and be well rested- Tall stool in the kitchen for cooking, short stool in the tub for showering- Easy chair in the study so I can sit straight, cross my legs, fold them up under me, etc- In my lab, appropriate height stools so I can sit while I do labwork- Ask for a seat on the bus if necessary (I find that "I pass out when I stand up" tends to get much more response than "I have bad knees"!)- Prep food on the dining table rather than in the kitchen - easier to sit down that way- I use a laptop, so I can sit at my desk or on the couch (at work) or any of (easy chair, rocking chair, couch, bed) at home- Keeping a hair stick handy to put my hair up on really hot days so I sweat less- When I wash my hands, I dry with a paper towel and then use it (wet) to cool off my face, neck, and arms- In the summer, sit on the porch in the shade instead of sitting inside - more of a breeze but still shady (I live in a non-humid non-a/c region of the country)- Sort home/work tasks - things I can do while brainfoggy, things I can do while mentally with it but needing to sit, and things I can do while feeling goodish. Switch between the lists as necessary- Count the number of Priuses on the roads I walk to work (helps me realize there are cars out there)etc. Quote
AllAboutPeace Posted June 21, 2012 Report Posted June 21, 2012 Wow...I never thought of the heels...that's interesting. I have looked at my wedges a few times, but just figured I wouldn't have enough coordination/balance and I'd end up flat on my face. Maybe I'll pad myself up and try it around the house Quote
AmberK Posted June 21, 2012 Author Report Posted June 21, 2012 That does make sense with the heels/wedges, Wendy! Thanks! Thanks for yours too, Peregrine, we're building up a good long list now. One that I forgot to mention is that my husband bought a dining trolley very cheaply from a local auction, and it's been an absolute godsend. If I'm making something like sandwiches, I just load the trolley up with everything that I need, then wheel it into the lounge to sit comfortably to make it, then wheel it back to unload again. Quote
kayjay Posted June 21, 2012 Report Posted June 21, 2012 About shoes, I also can wear shoes with rocker bottoms. I just gave away my last pair of very flat shoes - birkenstocks. Anything with a little instability seems to keep my leg muscles more active. I can wear FitFlops but MBTS are the best for me. Very pricey though.Because do love shoes- wedges are my best friend because they don't have to be ugly! Quote
kjmom Posted June 21, 2012 Report Posted June 21, 2012 Wow! Thanks for the tips! Mine are: -Take your time to get up from sitting/laying down, that can help dizziness/fainting-Drink a lot of water once you get up in the morning, your dehydrated from not drinking the whole night! -(Keep hydrated during the day as well, that helps blood flow I think) -I was told by my doctor that no nightlights can help you sleep, (it's working a bit for me!) Thanks again! Kayla, 10 Quote
Wendy C. Posted June 21, 2012 Report Posted June 21, 2012 Kayla, great point about us being dehydrated in the morning, since we haven't had any fluids while we sleep. I drink about 10-12 ounces right away when I take my first pills, plus even a few sips of Gatorade.kayjay, yes, I think it is any shoe with some instability that helps me as well. I had wondered about those fitness shoes with the rocker bottoms, if they'd be good for us with pooling and it sounds like they could be. I looked up MBT shoes and they do look interesting, but like you said, expensive!I hope we get some more replies on useful tips, these are good! Quote
corina Posted June 21, 2012 Report Posted June 21, 2012 Great point Kayla! I have a water bottle next to my bed and drink during the night (at least half a liter). A few years ago we decided to make changes to our home to make it more suitable for me. We got rid of the high kitchencupboards, chose an induction hob instead of the gas hob, installed a mirowave and oven where I could reach it while seated. But what helped me the most is my stool on wheels that can be elevated. I can scoot around the house while seated, really great!!! Quote
potsdo Posted June 23, 2012 Report Posted June 23, 2012 There is a website somewhere that has a great list of what helped one POTS patient. Unfortunately, I can't find the link (must be the brain fog). Perhaps someone knows the link - the poster listed things that helped them like "forced themself to stay awake", "didn't give in to their body which was behaving like a tantruming child", "gradually exposed themself to stimuli". Obscure clues, but, maybe it will ring a bell with someone on this forum. Quote
kjmom Posted June 23, 2012 Report Posted June 23, 2012 Some other things that help Kayla are:-Shower stool has really helped her blood pooling in her legs and dizziness during showers-blackout curtains to sleep a little later in the morning Quote
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