u/BeautifulElodie2428

Some TW: medical is affecting my ability to speak

I’m finding that I have more times where I can’t speak when I want to. I just can’t get the words to come out of my mouth. My verbal function is disintegrating. Sometimes I can think it in my mind but I can’t type it out. Sometimes I can’t even think the words at all. I’m so tired even when I get 7-8 hours of sleep. Granted it is medically induced sleep. I have always needed 10-11 hours of sleep to function and I never get it. Even with the meds.

I couldn’t sleep for two hours last night even after the meds because of the pain in my body. I couldn’t get my shoulders to not be curled up like a turtle. I’m realizing that my normal is not actually normal. I was diagnosed with hEDS. >!My shoulder was popped out of the socket? I did something and it uncurled. But there was a loud noise.!< It’s better now but it’s painful! I don’t have anything for during the day that won’t cause drowsiness. I don’t show pain the way people want me to - I shut down because of being told to stop complaining or “take a Tylenol and stop talking about it!” for many years. I’m in pain. I’m always in pain but my verbal ability seems to disappear when I need to explain it or say I’m in pain.

To my partner all I could say was I was “unwell.” And he didn’t understand- he tried and he’s always kind but I wasn’t able to give him any answers or information so he couldn’t help me. I cried myself to sleep. Exhaustion overtook my body.

When I go to doctors offices and they don’t have a way to dim the lights, I am sometimes not able to say what I need to say or I get hyper focused on medical trauma that I miss what the Dr is trying to say. I only processed that I interrupted the doctor the other day and I missed what he was going to say because I hyper-focused on a bad experience. I didn’t mean to.

I’ve been super anxious because I’m getting a wheelchair (which I need and have been waiting for and it’s going to be more months until it’s here and am super grateful) and I have had to meet a lot of people who are telling me to make changes. And the transition is making me anxious. Change is hard. I do not like change. And they’re demanding I change my whole life it seems.

I don’t like being this anxious. My medication doesn’t seem to be helping. I’ve been trying a new way in therapy where I can type instead of talking. I’m so tired.

My mom does this thing where she gets frustrated that her suggestions don’t work because…. I’m disabled. Oh just read. I can’t. I get headaches. Use your computer. Again. I can’t. I get headaches (migraines). Well go for a walk. I can’t. I literally get stuck on my own. I also have lupus so being outside is not the same for me as it is for others. Also if I don’t have someone with me to get the car if I can’t make it back using my walker, I could get stuck in the heat or I could pass out. She asked me if my boyfriend was with me. Of course not. It was the middle of the afternoon in the middle of the week. He works. My friends work. I can’t have my caregiver more hours than I have her and she wasn’t with me today. And when she is here we don’t have time to casually go for a walk. There’s too much for her to do as it is.

I’m terrified of passing out and having my service dog get stuck in the heat and get hurt because I passed out trying to “push myself.” She always says “You’re more capable than you give yourself credit for.” but it’s how she invalidates when I ask for help or how she decides that I’m not trying hard enough without trying to understand that her suggestions assume incompetence while being snotty about believing in myself!

I tried the manual wheelchair my dr gave me out of spite (she knew what I was asking for) and got stuck in the street. My neighbor had to come take me home. My mom asked me how I got stuck in the road. How do you think I got stuck in the road? I tried being out of my comfort zone. It doesn’t work. For so many reasons. And none of them are that I just haven’t tried the freaking obvious.

What does she think is going to happen? That if I push myself I magically won’t have the medical problems I have? Why does she think that she is the only one with these obviously simple answers? What does she think I do all day? I’m not having fun. I’m not living life like they are. The fact that my retired parents have more of a social life than I do is ridiculous. The fact that they don’t understand how that affects me is also ridiculous.

Yes I’m in therapy because it’s frustrating and emotional rants don’t tend to make good connections but I’m out of ideas. what does you guys do 1) responses that shut down this ridiculous thinking 2) small step items to fill in the time. A lot won’t work but I’m open to ideas. It’s hard to figure out what to do. It’s not easy. I stopped knitting which I love to do because of the pain in my wrists and I have had multiple injections this month for the pain in my hips so “gentle” walks aren’t really possible. I haven’t roller skates in my garage that I’ve literally never used. There is no gentle movement. The pool is also very, very loud and I haven’t been able to handle the sensory so swimming is also out of the equation

I’m in that space where my bloods are reflecting how I feel and I’m grateful for it. My Dr is great. He is validating and he goes over things with me. With this, he can do something about it maybe? Just wanted to share a small success. I dislike the “your bloods are normal” and then other drs say they can’t do anything because it’s “not showing in the tests.” Okay but I don’t feel well. Massively do not feel well. It’s not in my head. So this feels like a win. Somewhere to start. To adjust something.

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I’m in a program and their suggestions for eating meals at designated times is to set an alarm. Their suggestion for being taken off of the medication my body physically needs was to “just go back to the way it was before.”

I will never. EVER. go back to the way it was before. This is THE hill.

I decided not to see the behaviorists again.

The program called me today and aggressively said that I have to see all of the doctors and schedule them right that very minute. They claim they’ve called me several times but they don’t leave voicemails…. I have calls scanned. Just say your name at the tone and tell me who is calling and I’ll answer. They never do. It apparently confuses them to leave their name. Which they say anyway when I answer the phone.

And - oops! I said it out loud.
“I don’t want to see the behaviorists because they’re not trained in neurodiverse behaviors. Their suggestion was to set an alarm. Wow! I never would have thought of that! I’m cured! Do they want a cookie for that groundbreaking suggestion?”

Do I regret it? No. No I do not.

I’m so sick of the medical system that isn’t training for neurodivergence at all. But I’m the “rude” one if I am sarcastic about their lack of effort responses? What exactly am I supposed to say to that? options that don’t dumb me down. I’d truly would love to know.

-Set an alarm.

-Eat at regular intervals.

-Meal prep so you don’t snack all day.

Mind blowing! Truly. QUICK put your name on this before someone steals your brilliant and unique idea!

Their exercise guy told me to ignore my sensory overload because “old people get out and ignore their physical pain.” Dude. I’m already ignoring my physical pain. (Spoiler: It doesn’t work) I literally do not have the reserves to ignore my accommodation needs too.

How do you get seen virtually? By having to come in for an evaluation. My objection is mostly not a physical thing - I mean it hurts but that’s life. It’s sensory overload that puts me over the edge. I did PT and they stopped because it wasn’t improving my symptoms. I have a chair, stretch bands and weights etc for the equipment. They do online workout classes that you don’t have to come in for! “But that’s how you get permission to do it virtually.” So it’s set up for neurodivergent people to fail. And I already had my evaluation. “Did you get random paper signed?” No. Why would I have? He didn’t tell me it was an option!

Edit: and I’ve told them 3-4 times now WHY I chose not to schedule the behaviorists and the exercise guy. They’ve since hired more people but I wasn’t aware that they did however, the coming in for evaluation is still an issue.

Years ago I worked at Joann’s with my friend. One evening in the winter - around the holidays it had snowed a ton and the weather was in the negatives. As poor college students we didn’t have the luxury of running the car while we waited for each other. My friend was on shift and I was just picking them up so our manager let me in. The lights were out, the doors were locked and it was very obvious- to non entitled people? that the store was closed. This lady comes running up, yanks on the doors and gets mad that they’re locked. She then starts banging on the window (where I’m waiting in my street clothes for my friend) and demanding that I should let her in.

I said “Sorry- store is closed.”

She huffs “YOU’RE inside!”

I said “Yeah, I am. Have a great night!” And proceeded to ignore her continued tantrum. She then waited for us to come outside and complained to the manager who clearly just backed me up. Eventually she said “Lady, I’m not being paid to hear your complaints in the freezing cold, it’s illegal to take my time when I’m off duty. I’m not interested in standing here all night with you. You’re welcome to come back when the store is open which is exactly what the staff told you. Make a choice - if you don’t want to make it then I will and then you’ll be banned from the store entirely.”

The lady called to complain about all of us “night staff” to which our Boss told her that she “didn’t have a night staff” so the customer “must have been mistaken.”