A Little Tea POTSie

Hi there! My name is Blythe, and I'm a eighteen-year-old with Dysautonomia, specifically Postural Orthostatic Tachycardia Syndrome. I also have chronic headaches, Benign Hypermobility Syndrome, insomnia, anxiety, and dysthymia. This is my health-only blog; my main is aceprouvaire. I also have a fashion blog called amiafairyprincessyet, which is by definition a disabled fashion blog.

Random question for POTS sufferers

koistyjayne:

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.

fogwithwheels:

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  aerynrae18@gmail.com

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!

tl;dr:

my wheelchair is broken, please help me fix it!

here’s my paypal:  aerynrae18@gmail.com

(via fogwithwheels)

flammable-femme:

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 image

image

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

(via floralandfluid)

You don’t have to like being disabled

realsocialskills:

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.

(via benicebefunny)

mylifewithpots:

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.

chameleonchild:

pumpkinonline:

VERY IMPORTANT ANNOUNCEMENT!!
We have a backer who gave to the $3000.00 tier. And while that is exciting and great for us, this is really important what she wants to do with her reward. She wishes to remain annoymous but this is what she wanted to say.

One in ten Americans has a disability. And yet one of the hardest things to deal with, being disabled or ill, is isolation. The people in your day to day life suddenly don’t understand, or maybe you can’t leave the house, to reach those that would. So you turn to the internet, and social media, where you can talk to people dealing with similar issues, and find a place for yourself.

Even in support groups, sometimes, it can be hard, because the only thing you have in common, the only thing you talk about, is illness.

I had an idea. I wanted to create a haven, a place where everyone could go, sick or not, able or not, and exist together. A place where people can gravitate together, and share similar interests, with no pressure. With no judgement, not a place just for us, but a place that we could be, and relax, together, and also with others. I saw Pumpkin Onlines Kickstarter, and I wanted to play the game immediately. The more I thought about it, the more I realized – maybe we could join forces, and bring my dream into Pumpkin Online, a perfect platform for us all to play and be together.

Thanks!”

—-

Wait but that’s not all she also said this.

You have no idea how much this means to us. Personally I have Chronic Fatigue Syndrome and Fibromyalgia. I am on the severe end of things and I am on bedrest 23 hours a day. It is hard for me to sit up for any length of time most days. So all of my social interaction is done on line. Most of the people I know aren’t in such an extreme place, but many are not far behind.”

Her village seed reward allows the backer to create their own village, with 4 NPC families with shops. As well as be a producer with an active role in the game development. 

Her idea is to create an island in the game inspired by the Spoon Theory

The spoon theory was created by Christine Miserandino which explains to able-bodied people what it’s like to live with a chronic sickness of disability. You have to read the article in the link to understand.




SO GUYS if you read all that. We need to make this happen. Like we need to make this backer’s idea come alive because her tier makes her apart of our team now. If we can make our goal she can create this place in our game. The team is already discussing ideas and concepts for this place in our game map that will created by her. And will also bring awareness in our game for chronic illness. 


So ONCE AGAIN. We have 2 weeks left in our Kickstarter. If you want this happen any kind of amount would help push us further. We’re so close. We can do this. The teams is ready and willing to start working and go forward. 

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Pumpkin-Online is a Harvest-Moon / Animal Crossing inspired mmo currently in development by indie game company, Pumpkin Interactive, we need a lot of support to make this happen so please follow, and spread the word about us
PLEASE SUPPORT OUR KICKSTARTER! IT ENDS SEPTEMBER 18th.



Spoonie signal boost needed! There could be an actual spoonie island in a video game if this gets funded!! So wish I had a PC so I could play it.

(via wheeliewifee)