I Feel Like We Dont Talk Enough About How Distressing And Disturbing Memory Loss Issues Are. Forgetting

i feel like we dont talk enough about how distressing and disturbing memory loss issues are. forgetting what you were talking about halfway through a sentence, putting something down and instantly forgetting where you put it. having to reread one paragraph over and over again because by the time youve moved onto the next sentence you dont remember what the one before it said. always doubting if your memories of things are real, not being able to remember important life events.

its so incredibly scary, it feels like your mind is constantly playing tricks on you and you start to doubt whats real and what isnt.

“i forgot” is treated like a lazy excuse when it’s genuinely such a big issue for so many people.

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 the fuck does this dmv not have chairs (i know some dmvs do but in my experience they only gave them to seniors and people with children and those with visible disabilities and I don’t bring my mobility aids cause I’m worried probably for no reason of being some kind of denied or poorly treated or something idk ). I have been standing for an hour and I am in pain but I know if I sit on the ground I probably won’t be able to get up. gahhhh. also the accessible entrance is literally so far from the main entrance like wtf. Also also it’s hot in here cause if so many goddamn people

Why are spaces that are meant to accommodate so many different types of people so damn inaccessible

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.

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!!

We love my boyfriend for making this for me :)