When you’re talking about it, do you pronounce it like pots or P-O-T-S? Haha I’m in the process of finding out if I have it and I’ve been pronouncing it like pots. All doctors I’ve seen so far though don’t really seem to know much about it. Wondering if I’ve been saying it wrong!
I pronounce it like the things you cook with, but bear in mind that there is also a disease called Pott’s that’s pronounced the same way! If you’re talking to doctors, you might wanna say Postural Orthostatic Tachycardia Syndrome.
okay, I’m sorry I keep doing this to you all
I’m remaking my donation post because the old one was just getting really long as I kept adding information.
So here’s what happened in the last few months:
same as before, my awesome wheelchair that I bought off e-bay is in need of new wheels. The current ones I have are too small and it causes me pain to use them for too long. To get the right type of wheels, with the type of hand-rim I would need, and ship that to Canada, it’s going to be more that $1000.
Then in July I fell while taking the bus and it turns out I hurt myself worse than I thought. I got a concussion and whiplash and that’s been making my regular stuff worse and it’s just been tough. (also I was off for 2 weeks unpaid which was hard financially)
Now my chair needs a new backrest. I was trying to get a used one in order to save money, and that’s still the plan, however since my upholstery is ripping right now (I’ve sewn it back up but I don’t know how long that will last) I need to take whatever the fastest option is. If you’re not reliant on mobility equipment this may not make sense to you, but this is a problem for disabled people.
I’m going to try to do what I can to work on this, but, I admit that I need help right now, so this is me asking for it.
if you’re able to donate, my paypal e-mail is firstname.lastname@example.org
If you’re not, or you just would rather not, but you still could signal boost, that would be awesome.
Thanks for everything you’ve all done so far, I really, really, really appreciate it. You have no idea. I wish I didn’t have to keep asking, but stuff keeps coming up.
But trust me, I am super thankful for everything!
my wheelchair is broken, please help me fix it!
here’s my paypal: email@example.com
I JUST GOT THE BEST FREE APP ON MY COMPUTER
IF YOU HAVE SENSITIVE EYES, GET IT
It’s called “Screen Shades” and you can tint your computer screen with whatever shade you want. I have mine on orange right now and this is what it looks like
Also, I’m wearing my orange tinted sunglasses at the same time that I have this app on and AHHH
this is gonna make extended blogging sessions so much easier on spoonies and others with sensitive eyes
This is what I think disability acceptance means:
- Facing what your abilities are and aren’t
- Accepting yourself as already having value
- Living your life now and doing things you care about.
- Not putting your life on hold waiting for a cure
But, some kinds of acceptance talk end up putting destructive kinds of pressure on people. And I think:
- It’s ok to like or dislike being disabled. It’s ok to like some aspects of your condition but not others
- It’s ok to want treatment and to be frustrated that it isn’t available
- It’s ok to pursue treatment that *is* available
- It’s ok to work hard to gain or keep certain physical or cognitive abilities, and to be happy or proud that you have them
- It’s ok to decide that some abilities aren’t worth keeping, and to be happy or proud about moving on from them
- All of those things are very personal choices, and no one’s business but your own
- None of them are betrayals of acceptance or other disabled people
The point of acceptance is to get past magical thinking.
It means seeing yourself as you actually are, without being consumed by either tragedy or the need to focus on overcoming disability. It means accepting where you are, and living now, without putting your life on hold waiting for a cure.
Acceptance creates abilities. Acceptance makes it easier to be happy and to make good decisions. But acceptance does not solve everything, and it does not come with an obligation to love absolutely every aspect of being disabled.
Does anyone else feel like the mornings are so hard and so symptomatic?
Yeah that’s a confirmed POTS Thing. It’s true for pretty much all of us.