Undiagnosed Something - Tumblr Posts

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

I hate that out of fucking nowhere I just get sick and nauseous. Like wtf is this shit??? I didn’t do anything????

I finally got my custom knee braces!!!! I’m so fucking happy I just wish it didn’t take this long to get it authorized. I’m so lucky too that my insurance covered them because otherwise they’d be ridiculously expensive. They were 3D printed to match my legs so they fit so perfectly. Getting used to them is hard because they make my leg muscles have to actually work rather than just going along for the ride and my joints don’t hurt as fast during the day. Walking is so much better now. I’m so fucking happy omg. I’m so thankful to my sports medicine doctor who wrote the letter that was hugely responsible for getting my insurance to approve them.

Now I need custom fit braces because of the significant size discrepancy between my thighs and my calves. Every pre fabricated brace I have tried or wanted to try didn’t fit me in so many ways. Either they didn’t go big enough to fit my thighs or they fit my thighs but were too big for my calves or they wouldn’t sit right on my knees or so much else. But I finally have amazing braces that fit perfectly and actually stay on my legs and for that I am so thankful.

These braces have made such a big difference in how active I’m able to be and how I’m able to do physical therapy. With these braces I can actually get my knees and legs closer to where they need to be without the same kind of pain and instability that I have without them.

Now I’m working on getting a disabled parking placard because while walking is easier it’s still hard because of my joints and fatigue and also because of my POTS and just everything else that’s wrong in my body. So I have an appointment with my gp to work on the paperwork and then I’ll go from there to apply. I’m so happy that I’m finally able to get even just some of the help I need and for that I am so grateful.

I just want to not be in pain.

I just want have parts of my body not be numb.

I just want to be able to go up a flight of stairs without feeling like I’m dying.

I just want to be able to go on a walk and actually enjoy it rather than have to think about how close the next bench is.

I just want to not have so many gi issues.

I just want to not be sick all the time.

I just want to be able to go through a day and not be absolutely exhausted by the end of it.

I just want to be able to live and not have to worry about whether I’ll be able to do what I can do today tomorrow.

I just want to have a body that works right.

Does anyone else feel their knees slipping(?)/moving in the joint when you bounce your leg?????? Or is this just a me thing?

Things I did today:

Rode a caffeine high.

Simultaneously started several tasks...didn't finish a single one.

Procrastinated by watching tiktok for long periods of time.

Stressed.

Spaced out.

Caffeine crash.

Spent 13 minutes writing this post trying to remember what I actually did.

Being chronically ill means lying and saying “I’m fine” when people ask how you are, because if you’re honest about how you actually feel & your symptoms, it makes people uncomfortable.

You end up comforting them, when you’re probably the one who needs comforting 💗

*Gets overwhelmed in class because I don’t know what I’m doing

*Distracts myself to prevent a breakdown

*Misses instruction/explanation from the teacher

*Doesn’t know what’s going on

*Gets overwhelmed because I don’t know what’s going on

*Repeat until start crying

he said me willing to fight someone for him was rediculous

he said i was ridiculous

he hates me

he said me willing to fight someone for him was rediculous

he said i was ridiculous

he hates me