#pots tips

For over a year I've just been stacking ice packs all over my body at night & 4 fans blasting at me because that's when the heat intolerance gets to be the worst. Yes, I end up shivering until I fall asleep, but it helps with muscle cramping and the heat significantly. If I get too hot, my body WILL flare.

My heat intolerance is the WORST around my head & inner ears, to the point where it will give me awful headaches that can last for days. I've always had the problem of not having ice packs that will stay on my head because I move quite a bit in my sleep. They'll fall off, and I'll wake up with the worst pressure in my head. I'll be sweating, and my whole body gets hot to the point of stinging.

This has helped me SO much. The velcrow strap in the back doesn't really pull on my hair, it lasts a good 45 minutes to an hour, and it bends to the shape of your head since it's gel. I usually put the first one on my forehead and the second right above it.

-dont blame yourself for not being able to do what you used to. Your body used to do its job to a better degree than it does now. You are not lazy bc your taking more breaks or bc you cant get out of bed. Your taking care of yourself. I struggle with this all the time. Especially considering my living situation. Shit doesnt get done when I dont do it but I simply cant sometimes.

-that leads me into my next point. Take advantage of your good days, but dont overwork yourself just bc your "not feeling chronically ill." When you have the energy, start the laundry, do the dishes, take out the trash, but still take breaks as needed

-keep a set of your meds literally everywhere. I have a pill box I specifically keep in my car with a weeks worth of my morning meds. I have a three sets of my most important meds in my bag at all times. I have pain meds stashed in every crevasse they could be stashed. Trust me, when your running late and you get half way to work before you realize you havent taken your meds your gonna want to be able to reach into your glove box and take them rq

-buy the mobility aid. You think you need a brace bc a specific joint hurts like hell and wont stay in place?? Get it. You cant walk for long periods of time and think a cane would help?? Get it. You think a shower chair would do you good so you dont pass out with shampoo in your eyes and naked?? Get it. Just get it. Walmart sells canes for under ten bucks and they work really well. They also have extra tips in a two back for 2.50. Dollar tree has braces and like 12 different pain creams. Five below also has some braces and quite a few pain relief options. You can also get them cheap on sites like shein or Amazon and sometimes depop. ((I know I know, dont support those sites but a bitch is broke and two bucks for compression socks is a fucking steal)) You can also sometimes find wheelchairs and canes and crutches at goodwill. It isnt a guarantee but its a good option if you need smt cheap. ((Be careful and check that their not broken before you buy))

-take the pain meds. Put on the pain cream. Ice that joint. You dont get brownie points for toughing it out and it will help your health in the long run. If someone looks at you like your weak for taking smt to help with your pain, their the problem, not you.

-create a good support system. Find the people who will drop their brand new iced coffee to stop you from slamming your head into the ground during a fainting spell. They are out there. Find them and hold onto them for dear fucking life

-handheld fans, battery operated or chargeable, fit easily into bags and can help cool you down

-bring electrolytes/a drink when you go out

-vitassium fastchews are amazing if you’re dizzy & need hydration, sodium, increase your blood pressure, ect.

-have salty snacks in your bag

-ginger chews or ginger Dramamine are great for nausea, and so are a product called “sea bands” (whatever works for you), it can also be reassuring to have a “sick bag” with you, just in case

-while by no means a necessity, it can be nice to have some kind of makeup remover or moist towelette on hand if you experience hot flashes or getting clammy…also recommend having chapstick for if you get a dry mouth

I have pretty severe PoTS, to the point where I'm pretty much a full time wheelchair user now, maybe standing 15 minutes a day in 15 second intervals lmao, being optimistic.

I Always thought I was just a very light sleeper, my whole life. Used to wake up seven to ten times every night, to drink water, go to the toilet, have a snack, go pet my dog, a sneeze from two rooms over would wake me up everytime.

I got a hospital bed installed in my room this summer, when it's at its worst, and it took a while to figure it out, but I noticed that if I sleep with my upper body horizontal but my legs raised all the way it can go, I sleep like a stump.

I never wake up in the middle of the night anymore, I just, sleep ! So well too !!!! I have so much more energy than before !!!!

Turns out that I wasn't a light sleeper, my brain just literally didn't have enough blood flowing to go into deeper sleep ! I fall asleep easier, I sleep better, wake up with more energy and less grumpy, it's been a game changer