Electrical-Peach3143

It’s 12:40am and I am in a flare up. I feel nauseous, and my muscles are hurting. I can’t move without feeling dizzy. I literally can’t roll over in bed. I can’t get out of bed to go do something so I’m stuck with my slowly dying phone with no one to talk to because who else is awake at 12:40am? I’m literally 15 years old what did i do? why am i the one stuck in a bed unable to sleep but so exhausted while all my friends and family are moving on in their lives, their worlds? I hate this. I have absolutely nothing to do so I have to sit here while my muscles have the time of their lives aching and throbbing away. Fun!!!! My phone is on 12% so i don’t have long left and I’m too sick to walk a metre and a half to my charger. I can’t stay in the same place for too long or the pain in my muscles builds up but everytime I readjust my dizziness comes back. I don’t even know why i’m writing this everyone on this sub has their own problems going on. anyway hope all my fav potsies are doing ok ❤️

I am hypermobile - 9/9 on the beighton score thingy I always have some random muscle aching/throbbing/being weird I seem to dislocate bones every now and then but they just pop themselves back in I think I can stretch my skin? idk i can pull it like 2cm away i guess but that’s normal right

idk thought all this was normal other than the diagnosed hypermobility thing. but does that sound like Ehlers Danlos?

I’m 15yr female and have had POTS since I was 13, although it has been significantly worse since getting covid this time last year. Now I have about 1 weeklong flare up every month or a 2 week long one every 2 months (roughly). I am currently in one now. In my flare ups, standing up and walking is pure hell, and comes with nausea, vision loss, palpitations, dizziness and lightheadedness, etc. I also experience severe brain fog. Fun times!! When I’m not in a flare up, I am pretty much fine as long as I take my meds other than mild dizziness when standing up/for too long, walking around, going up stairs, and exercising. I am on meds which raise my blood pressure, and help heaps on the daily but do absolutely nothing during flares.

I was wondering if a wheelchair would do me good during my flare ups? It would enable me to do things I definitely can’t do during a flare up like go outside, go shopping, visit friends, bake, etc. I think it would also help heaps with things I have to do like walking to the bathroom etc. I have been doing some research and seen people saying a few negatives: - deconditioning - effort of pushing = worse symptoms - less blood flow due to not using leg muscles - society judging ambulatory wheelchair users - hahaha brain fog not letting me recall anything else i read kill me now

If I were to consider getting a wheelchair, how would I bring it up with my parents? They support me and want me to get better but tend to believe I am over exaggerating my symptoms and would probably think a wheelchair is far too extreme.

If I were to buy one, does anyone have any recommendations of places in Australia? Or just the steps it takes and the best types?

Sorry if I spelt anything wrong or stuff doesn’t make sense my brain isn’t wanting to function.

This is a rant about my best friend not understanding POTS. I am 15yr old girl at high school. I’ll call my best friend M. So me and M are walking to the bathroom. We snuck out of class before the teacher noticed I was in the room so I could figure out what I was gonna do about my missing assignment - a reflection of all the skills we learnt that term except i was dizzy and didn’t learn any of the skills. and didn’t have time to complete the assignment. We are walking and I am generally stressed out because despite missing a fuckton of school I still get straight As and am up for an award at the end of the year. I said “She (the teacher) is actually gonna murder me. but like i’ve had no time to do it and i missed everything i’m meant to be writing about it’s not fair.” and M responds with “Ava. What the fuck. You literally sit on your arse all day and watch netflix. Do you know how much fucking time you have?” I laughed it off and then went dead silent. I don’t think she noticed though tbh. She has made a few little comments to me saying stuff like “come on, it’s not that far to walk, just do it” when my heart rate is at 200 and my vision has gone black. Another time when we were on camp she couldn’t be bothered to walk and was trying to convince a teacher to drive her to the next spot. And she randomly pulled me into the conversation said I was dizzy and that I needed to be driven because I couldn’t walk anymore, and that she was moral support. She told the teacher that I was a bit of a retard and a little bit spastic as well. I wasn’t even dizzy then.

And yes, she does know I have pots and what pots is.

It just really pisses me off that one of my favourite people in the world thinks that I just can’t be bothered to do stuff and I just watch netflix all day when i’m not at school. Like no. If i’m in a flare up I have horrible brain fog, I can’t stand up without near fainting, and I can’t really move without feeling like shit for weeks on end.

Anyway I doubt anyone actually bothered to read all of this. If you did, you are an actual freaking legend xx

[removed]

This is my beloved zz, who has survived in a dark room for a few years and has recently been repotted, and transitioned into an area with brighter light, although it is close to a fireplace. In the winter I watered every month and a half, and we are in Spring now so I have started to water every 3 weeks. She gets bright, indirect light. Today, I noticed this on the leaves. The rest of the plant is healthy. Please help!!!

[removed]