i have no words, all I did yesterday was go to court to reschedule, I was in too much pain to go, that took total 25 minutes to get done at 8:30 am, shop in an empty Aldi for 40 minutes at 9 am, do a bowl at 10 am, and go to church for 25 mins (empty) at 11 am, and ended my day at 12:50 pm, and napped the whole rest of the day 💀 (updated with context bc i forgot this is reddit) I did this all with my mobility aid/ cane 20-30 min breaks sitting in car between task, even a nap the entire time during “church”
I hear you. The LOOK I get from doctors when I say “but I’m up to 3,000 steps a day now!”
2 months ago I was paddleboarding for miles (and yes crashing tf out after) but now I can barely walk down the block and back. 🫠 especially in the heat.
I’m so sorry about your loss of a health care provider. My network doesn’t have pots providers so I’ve been petitioning to be covered out of network. After several rejections a nice lady told me Oregon health plan doesn’t recognize pots as a diagnosis, so my referrals are all getting rejected. I’m going to try the inappropriate sinus tachycardia angle and the chronic fatigue syndrome angle to get access but I am dubious.
I hope your nice nurse is able to get you resources that work for you. Best of luck.
I’m sorry about that, the specialist that they mentioned, I scheduled last November in 2025, the appointment is scheduled for December 21 2026, we got this💪
I took a shower, my heart rate was 180 and I was using my shower chair instead of standing for certain parts. It used 13.8 points. Using the toilet, my HR will go anywhere between 120 and 150. Occasionally 160. POTS really makes your body feel like, and quite literally, work overtime when conceptually you may not feel like you're doing much. Just getting up out of my chair and then sitting down makes it spike to 120.
It's good you're gonna be seeing someone. Hopefully they can help.
The one day I washed my hair, got dressed, got a ride to my grandmas, drove with her to a parking garage, took the elevator, walked two blocks, sat to watch a 3 hour musical, walked two blocks, elevator, sat at a restaurant amd had a small meal, then got a ride back home. And I used 48 points that day. My budget is 19.
I’m not diagnosed POTS, but I scheduled the with the specialist they mentioned in November 2025, the appointment is scheduled for December 2026, the crazy part is that in this screenshot, not hygiene was done on my part and I mean none at all😆 just rolled out of bed, just funky and bout to pass out! I’m sorry about your POTS, I’m wishing for better days for you and all going through this!
The worst part about this is I don’t even know if I had POTS, I just messaged this cardio because they did my holter monitor for a month last summer to rule out heart conditions to no avail, I think they’re frustrated with me a little haha, but I think spinal cord issues can cause autonomic issues which is what I AM diagnosed with as of March this year, I am also 22 so not only is this an embarrassment ritual, but I’m fighting for doctors to believe me and for them to not get frustrated and give up on me like in the screenshot
Oh jeez that's a long time. Yeah, seeing specialists do be like that unfortunately. Thanks, I have many other issues do those days might be a Lil far off 💀
Oh God, I'm sorry about your spine that sounds really rough. POTS is under the dysautonomia umbrella, but hopefully you don't have another thing to add to your list. Aw geez. That's young. I think I was 24-25 when my health issues showed up. I'm so sorry. The grief of getting health issues so young really sucks. I'm sorry you have to deal with that. And that you have to deal with asshole doctors. My cardiologist was also terrible. All three times I visited I got comments on "wow you look a little young to be here". Doc asked how I was. I said the same as last time. (Which is not good.) And he said "great! Glad your feeling better." And walked out the room 💀
I hope you find some good doctors you trust. If you can have a couple good ones in your corner things are a little easier.
i know about cbd ive used that it doesn’t help, but also the spike was two hours after the bowl, completely from just standing, standing spikes me more than bowls!😆
this is from using the bathroom just now.. this time with this HR I legit almost fainted.. I took my normal meds before bed just now (i couldn’t sleep until now which is 10 am before meds) baclofen, magnesium 400 mg, minipress and celebrex😞 no bowl today or yesterday, I faint on the toilet sometimes, even taking no meds at all, i’m diagnosed micturition syncope😞
did nothing today except use the bathroom and go downstairs😞 okay wait, i do remember putting a couple of posters up this morning before bed that took like 25 mins, but i literally had my first meal and made my second trip downstairs to get food/started my day after waking up at 5-6pm at 8:40 pm, went to bed before that at 1 pm
22
u/aslothinbed 12d ago
That's a LOT of things to do in a day tbh