More Malls Need To Have Sensory Places Or Quiet Spaces Or Something.

More malls need to have sensory places or quiet spaces or something.

Today I was at the mall and felt on the verge of crying from over stimulation from all the people at the mall so I went into the bathroom in the hopes of a quiet space and it was quiet for a while until a family with 5 screaming children came in and yeah I understand they need the space too and kids can’t always control themselves and it’s difficult for parents to control their kids emotions and what not so it’s absolutely not their fault but goddamnit that pushed me over the edge and I wound up crying and shaking for quite a while from all of the overwhelm.

We need to have sensory safe spaces for people to access for both kids and adults

It's Disability Pride Month!! Let's talk about POTS!

Hello beautiful people. Since it's Disability Pride Month, I wanted to talk about my disability. I have a condition called POTS. It stands for Postural Orthostatic Tachycardia Sydrome, which is a very long name, and you can see why we just say POTS. Essentially, it means that when I change position or stand up, my heart rate gets too high. It is normal for your heart rate to go up when you change positions. But what makes POTS different is it changes too suddenly and much higher than average. The National Institutes of Health defines that a person with POTS has "an increase in heart rate of 30 beats/min or more when moving from a recumbent to a standing position that lasts more than 30 seconds". Which on its own doesn't sound all that bad. I would be a much happier human if that's all it was. However, POTS comes with its own host of symptoms. That swing in heart rate can cause dizziness, lightheadedness, blurred vision, and sometimes fainting. Other symptoms of POTS include:

Exercise intolerance

Headaches

Nausea

Fatigue

Anxiety

Dry mouth

Excess thirst

Leg pain

Blood pooling

Brain Fog

Swollen Extremities

Sleeping problems

Bladder problems

Digestion issues

Tremors

Shortness of breath or chest tightening

Memory issues

Poor temperature regulation

Chronic dehydration

Neuropathic pains

Increased sweating to the extremities

Loss of appetite

Light sensitivity

Dry eyes

Heart palpitations

Chest pain

Cold extremities due to poor blood flow

Heat intolerance

Hypovolemia (low blood volume)

And probably more that I've missed! Doesn't sound all that fun, and trust me, it isn't! POTS is a condition under the larger umbrella of Dysautonomia. There are several different types of dysautonomic conditions, POTS is only one of them. Here are some fun facts about POTS:

POTS effects around 0.2% of the world's population

It is most common in females, 75 to 80% of all patients are female

Though it can be diagnosed at any age, it is most commonly diagnosed between the ages of 15 and 25 (I was 19 when I got diagnosed!)

There is no cure for POTS and it's a chronic illness

Some teenagers will outgrow the condition in their 20s

The average time to diagnosis is 5 years and 11 months (took me almost a year, luckily)

According to Dysautonomia International, 25% of POTS patients are so disabled they cannot work or attend school

There is no singular cause for POTS, and many patients will likely not know what caused their condition

Research on POTS is incredibly sparse, making advocacy, treatment, and diagnosis even harder

The usual recommended treatment is increased fluid intake, increasing salt intake, wearing compression stockings, raising the head of the bed to conserve blood volume, reclined exercises like rowing, recumbent bicycle, or swimming, and a healthy diet

While there is no FDA approved medication for POTS, some medications such as beta blockers can be used to aid the condition

Though the heart is directly involved, POTS is not technically a heart condition. It is technically a nervous system disorder stemming from the autonomic nervous system

There's lots to be said about POTS! I don't think I could fit it all in one post if I tried. But if you made it this far into the post, thank you for taking the time to learn about it! Awareness is key, and the more people that know about the condition, the better we are. Happy Disability Pride Month!!

7) languages are hard to learn so the fact you’ve done that is more than so many people (especially American English speakers) can say and also I don’t think I know a single English speaker who speaks “good” English it’s a MESS of a language

8) (this part goes for those who are native (English) speakers too and aren’t “good” at it it’s okay.) this language makes like no sense and the mechanics are difficult to get a handle of (especially if you have any kind of disability that inhibits language or speech or whatever) there is absolutely no reason to apologize for that but that’s not to say that if you don’t have a disability that makes it harder you have to apologize. there is never a reason to apologizing for communicating!!!!

my blog is, and always will be, a safe place for people who are not confident in their english speaking abilities. you will never be judged or mocked here.

One way to be an ally to disabled queer people:

If you want to attend a pride event, ask about their accessibility plans and policies.

Ask about their covid policies. Ask if they are accessible to mobility aid users. Ask if they will have strobe lights, if there will be bathrooms, if there is water. Make the event planners consider who they may have left out, even if the person being left out isn't you. Have your friends ask as well. Help create a demand. Help get conversations started. Help people see where things could be more accessible.

Because when we, the disabled, ask these questions? We're much more likely to get ignored, and much less likely to be heard when we raise hell.

So help us raise hell when we need it. Demand to know why your local Pride event isn't requiring masks, or is charging for water, or doesn't have wheelchair ramps, or whatever other accessibility issue you catch.

Stop leaving us behind. We need your fucking help.

Heat is fucking ableist i just want to go outside and not feel like I’m dying or going to pass out. Like sure being cold sucks and at a certain point it hurts like hell but for me at least heat and being hot is so much worse.

(I feel like I should note that technically the first bit of this (calling heat ableist) is a joke but I stand by it at the same time)

Is the high if the day 71 F? Yes. Do I still feel like that’s too hot? Also yes I will be sweating my fucking ass off and trying to walk as little as possible which is still more than I’d like cause I’m doing college classes this summer and the campus is massive.

Having POTS fucking sucks all the time but especially in summer omg

It’s so hot out and I feel like I’m constantly on the verge of passing out (still haven’t though so I consider myself a little lucky) it feels like I’m running a goddamn marathon