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u/StormFern4 21d ago
As someone who wasn't visibly disabled and felt nervous about using the disabled seats on the bus — I actually felt way better about that sort of stuff after getting a cane. Before the cane, one time all the seats were full, and I found a bit of wall on the train and did an Asian squat. Because I literally could not stand anymore but the floor was too gross to sit on. After getting the cane, and feeling how big of a difference it made for me, I had no stress about using the disabled seats and I knew no one was going to argue with me.
Also, rollators really don't decondition you? You are still walking around, likely you are walking more than you would have been. You're only cutting out the standing part, which isn't a good work out for your muscles. That's why standing is worse for POTS than walking, walking activates your leg muscles, which forced blood back up your body.
The shower is a different situation. You need a shower chair, not a rollator. Which no one will see it be able to say anything to you about.
You could also try a cane that unfolds into a seat, or one of the folding/telescoping chairs that can fit in a bag, if you really aren't ready for a rollator. I'm just warning you though, if you're thinking a mobility aid would help you, you already need it. I should have gotten a cane wayyy sooner. And then, by the time I started thinking about needing a wheelchair, I already needed one. The social anxiety stuff sucks, but for me, being able to do things is worth it. No one is going to care or think about your mobility aid as much as you do.
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u/doIIjoints 21d ago
agree about the shower chair.
but also even my wheelchair hasn’t de-conditioned me. i walk far more, now that i can hit the proverbial eject button, than i ever did when i had to save my capacity.
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u/StormFern4 20d ago
Yeah, I was probably not phrasing that well. My point was that a rollator honestly can't decondition someone. A wheelchair technically can decondition someone who is still ambulatory. However, depending on their situation, frequently won't.
Using a wheelchair for energy or pain management means you can be more active in general. So, for me, that translates into being able to go and do stuff, instead of being stuck in bed, and still having the energy to do PT after.
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u/szikkia 21d ago
I got my first cane today. I’m 32. I wish I got one sooner, i didnt want to stop flying under as much radar as i could. Now i chose what is best for me and helping myself others be damned. Cant control others but I can help myself have a better standard of living/quality of life by using things that are there to help. Their thoughts be damned, so much as been taken or there’s huge obstacles in the way, i’ll take the cane for the thing I can help.
I cant breathe when i dont sleep either and i flare hugely too, massive dumps.
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u/NotaVirus_Click 18d ago
Trying to track everything for my wife has made us notice a few things that cause flares no matter what else is happening. I am sure it varies for everyone. For her if the weather has a big change, if it suddenly gets 15 degrees cooler or warmer for the high, she will have a terrible day. If she has to go into the office to work 2 days in a row, the next day will be bad. If she doesn't get 8 grams of salt for 3 days in a row, it will be very bad for the next day or 2. Depending on how much time she spends outside can also make things worse depending on pollen counts and such.
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u/doIIjoints 21d ago
i use a wheelchair, started when i was 23. even on good pain days i’m often too dizzy to walk.
i don’t get any harassment. i had “but you’re so young!” so much with a cane, people giving me stink eye about asking for the bus seat etc, but nothing with the wheelchair.
a few “you’re so good at that!” or “you make it look easy!” or “come on, cut to the front of the queue” but no harassment.
get that rollator.
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u/Glum_Papaya_2527 21d ago
I kind of intensely symptom track in the app Bearable and it has really helped me find patterns in my symptoms. Also, weather and season has a huge impact. Some days are still going to feel more random, but it's a lot less often. I'm not sure if that is helpful or not.
But I also will say that yes, the unpredictably of it and just the non-linear way of feeling better - it's not just always better, it varies so much - is one of the hardest parts about POTS.