#potsawareness

[panicismydefaultstate]

Just in case anyone else needed to hear this today-

Your health is not your fault. You didn’t do anything to “deserve” this. And you are right, it isn’t fair. You are allowed to feel upset, hurt, angry and jealous that your health, body or mind disables you.

It’s not fair, and that sucks. You are allowed to scream about that as much as you need to.

[justsomerandomgay]

abled people don’t seem to understand why i try to avoid getting a cold like it’s the plague, like mate im literally chronically ill, i don’t need another illness on top of it!

[helios-hawk]

i hate you breathlessness i hate you brain fog i hate you dizziness i hate you tremors i hate you joint pain i hate you fatigue i hate you racing heart

[valcksys]

soooooo tired of people acting like my disability accommodations are a WANT and not a NEED

because it’s not a fucking want, I NEED these accommodations. Idc if they “inconvenience” you in some way. think about how inconvenienced I AM just by LIVING

[thecovenhouseco]

Slowly realizing that you may not be able to work anymore if you actually want to treat some of your disabilities feels like you’re being crushed like a hydraulic press. I’ve worked so hard, and I’m afraid that it was for nothing. So if you’re struggling with the same thing, I’m proud of you for all that you’ve done.

[chronicallyillbookwyrm]

I’m so exhausted that I’m pre-exhausted for tomorrow.

[kensies-chronically-ill]

Its a staying horizontal type of day

[no-im-not-a-robot-stop-asking]

Happy rare disease awareness Day!!!

Reminder that rare diseases have less studies done on them, less available treatment and the diagnostic process can be a hellish 10 years journey of fighting with doctors to be heard,

and diagnosis can also be sudden and/or traumatic experience!!

All my love to people with rare diseases!

[theriseofthesea]

Me, literally just existing:

My heart rate 📈📈📈📈

[curlyhairwitchgf]

Like, even if you need to change your shirt or have a big bag

[bluejayqueen]

Imagine having the symptoms of a heart attack minus the actual heart attack…

[helios-hawk]

too nauseous to eat, even more nauseous bc I don’t eat 😭 I am like that fucking guy with the boulder

[justsomerandomgay]

i am so sick of being sick.

[aelianated-star]

Buckle up folks because this is a long post -

Tips for newly diagnosed dysautonomia patients:

- Drink a lot of water (so much water guys. Especially if you have hypovolemic types of dysautonomia, like hypovolemic POTS, it’s crucial)

- Keep up with electrolytes/ salt intake. Vitassium makes salt pills, chews, and tablets. I personally prefer the tablets because I can just suck on them for a while, but I know a few people who prefer the pills.

- Compression socks help, A LOT! One major component of dysautonomia, in general, is blood pooling (which can greatly increase your risk of fainting). The compression/construction helps blood flow and return back to your heart and brain

- Your disability(s) are valid, even if you don’t pass out/pass out a lot!! Only about 1/3 of people with POTS (one of the most common types of dysautonomia) pass out! And of those, few pass out regularly/daily (such as myself). No matter what, you are valid! Even if you’re undiagnosed, even if your case is “mild”, even if you manage it well without much help; you’re valid!

- Especially for those of you who are just being introduced to disability (likely because of long COVID), it’s okay to grieve the life you used to have/planned to have. You can live a wonderful, full life with these conditions (and other conditions), it just may require more accommodations than you anticipated!

- DONT BE AFRAID TO ACCOMODATE YOURSELF! Seriously, use mobility aids, get a 504/IEP, and make your space(s) accessible to yourself! I use forearm crutches for short distances, but because of how severe my dysautonomia is, I’m reliant on a wheelchair (with someone pushing me/motorized aid) to go more than a couple hundred feet/longer (or anything that requires standing for more than 5-10 minutes).

- Get a pulse oximeter or watch! Certain types of dysautonomia may cause lowered oxygen (hypoxia) because of a lack of available blood. It’s extremely important to monitor this and make sure you’re aware of your oxygen levels!

- Find community! I personally love using “stuff that works”. It not only lets you crowdsource for information about medications or treatments, but lets you message other people with the same condition(s) as you.

- If you feel like something is wrong, please talk to your doctor. I know it’s scary, especially if you have medical trauma/PTSD on top of these conditions, but it can literally be lifesaving. I noticed a sudden uptick in chest pain and casually mentioned it to my doctor. Sure enough, we found I have two types of arrhythmias (p-wave inversion and flutters) Now I’m pushing for genetic testing to see if my diagnosed EDS is vEDS/cvEDS

- Don’t be afraid to start and try medications! I’ve tried numerous medications and haven’t found anything that works quite right yet, but that doesn’t mean I won’t :). And some of you may not need medication! You may be able to manage with lifestyle changes, or IV therapy, which is great! Do what works FOR YOU. Everyone is different!

- Rest days are productive! Your body is working really hard to keep you alive, it’s okay to take a break! Take care of yourself, really, it’s okay to conserve spoons.

[dazzlinglybitter]

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!!