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.

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)

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!!

I absolutely fucking hate it when my parents or anyone is like “we’re just trying to help you” when in reality they’re just telling me shit I already know or are just straight up being ableist

I don’t need other people to tell me that the amount of pain I’m in isn’t normal.

I don’t need other people to tell me that I should lose weight.

I don’t need other people to tell me shit I already know about my own goddamn body.

I don’t need other people thinking they know my body better than I do.

I don’t need lectures on how using my mobility aids will hurt me in the long run. Like um excuse me these are keeping me from constant injuries and even more severe pain.

I don’t need other people to tell me I sleep too much. I fucking know that. I’m exhausted all the time and the only way to fix that is to sleep also get this I don’t feel my pain when I’m sleeping

I don’t need other people to tell me to exercise. Believe me I’m trying it just hurts too fucking much to do it regularly.

All I fucking did was tell my parents I’ve been dizzy all day because my heart rate has been up all day (thanks POTS) and they both fucking both start “talking” to me (really lecturing me) about all the shit I need to change and all the shit that they’re not comfortable with. What the fuck do you mean dad that you’re not comfortable with me being in pain??? And when I tell you that I use mobility aids to help alleviate that pain you say you’re not comfortable with that either. Who the fuck said you get to determine what’s best for me based on what makes you uncomfortable/comfortable??? It makes me, the person actually dealing with this shit (though if you asked my mom she’d say she deals with it too because I’m “an extension” of her), uncomfortable that they are imposing their opinions and ideas and feelings and ableism onto me.

Abled people do not get a fucking opinion about my goddamn body. I will take suggestions from people who actually listen to me and who have done the work and research to best help me and who aren’t obsessed with how I look to the outside world (my mom especially is obsessed with how we as a family look to the outside world absolutely obsessed and we have to be perfect and me being disabled doesn’t fit into her perfect little fantasy).

I honestly don’t even know how to engage in a productive conversation with them. They think they’re trying to have an “adult conversation” about it but when I tell them they’re not helping and that I already know everything they’re telling me and that what they see as helping me isn’t actually helping they just double down and call me out for being “immature” because I get really fucking frustrated because I’ve heard the same fucking things over and over and over again and again from them and myself and other people who quite frankly don’t get a goddamn say on my body. I told them if you think you can help tell me something I don’t already know or haven’t already tried and they just go “we’re just trying to help” like guys. You’re. Not. Helping. I’ve told you this so many times

Also this really hurt a lot more because I though my dad was more on my side than I guess he is. I thought it was just my mom who was so hell bent on being involved and giving me useless advice that quite frankly will just hurt me but nope it’s both of them and I fucking hate that.

All I wanted to do was help make dinner and now I’m alone in my room on the floor with my back against the door trying not to cry or punch something.

Also don’t get me wrong I love my parents and I’m super thankful for them but goddamn sometimes they’re so fucking infuriating

You do not need to know why someone is disabled.

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.