Happy Disability Pride Month! This Goes To The Visibly Disabled People, The Invisible Disabled People,

Happy Disability Pride Month! This goes to the visibly disabled people, the invisible disabled people, the chronically ill, the mentally ill, the chronic pain patients, the chronic fatigue patients, any spoonie out there. You deserve love and care. You're worth it. You have value.

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.

Why does so much stuff involve the use of my fucking hands?

I use crutches the majority of the time to get around cause hahaha pain and instability and what not so my hands are like always full so if i want to do something that involves my hand or both hands I have to stop moving to do it. It’s so annoying!

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!!

Why do abled people always fucking suggest the most basic things to “fix” disabled people’s problems/disabilities and act like they know better than we do???

If you, a person who does not live with the disability you’re trying to “fix”, can think of a solution off the top of your head without any research, experience, or even trying to actually understand what we have tried and what we’re actually dealing with don’t you think that we might’ve already or are already trying that???

For me this comes most from my mother saying that I need to change my diet (even though I have so many sensory issues surrounding food and have tried and failed so many times), that I need to lose weight (ma’am I am trying), that I should try stretching (you know what I’ve tried that for years and guess what it just stretches my ligaments because I’m fucking hypermobile and it ends up causes me more pain), that I need to exercise more (I’m trying but I’m also limited by pain. Pain that keeps me from being able to exercise most of the time. Pain that usually gets worse when I try to exercise), that I should try to not use my mobility aids because I’ll become reliant on them (ma’am they help me. They are not hurting me. They are what keeps me able to do stuff you want me to be able to do. Why should I try to not use them???), and so much fucking more

Like seriously abled people stop pretending you know our bodies better than we do I promise you you don’t. Even doctors (as shit as they might be) are supposed to listen to us before they even start to make recommendations (yeah many don’t but they’re supposed to)