Having POTS Fucking Sucks All The Time But Especially In Summer Omg

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

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.

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.

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.

We love my boyfriend for making this for me :)

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