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@bagelwithcreamcheeseandham
Intro
Hi, you can call me bagel I guess lol. I use this kind of like a journal to talk about my medical problems. Im 22, she/her, and uhh ive been a college undergrad for six years :/
Diagnosed:
āŖļø Hypermobility
āŖļø Rheumatoid arthritis/autoimmune disorder
āŖļø adhd
Not diagnosed but suspected:
āŖļø hEDS
āŖļø autism
āŖļø POTS
āŖļø anxiety probably
Another thing, I've been passing out pretty regularly for the past few weeks. Except not fully passing out, somewhere in between being very dizzy and losing consciousness. This is different from my "partial passing out" that i usually experience because with these recent ones, i have more control of my body. I'll usually fall against the wall or back into my seat, and my head drops and my eyes closed and I can't really move for a few seconds except for my fingers. I can wiggle my fingers a little bit and thats how I know im still there.
This is opposed to what usually happens where I pass out nearly fully and lose full control of my body but my mind is still maybe 15% there so im not like, completely unconscious. This version still happens too, just the other one is happening more frequently i think.
Recently I've noticed that I feel really tired after eating, usually after my first meal of the day. And not just a sleepy tired, but a heavy tiredness that feels like im being dragged down, and then i crash. The type of tiredness where my body and my head feels heavy and I have no choice but to lay down. And even while laying down with my eyes closed I still feel tired. And when I get up after 40 minutes or so, I still feel somewhat sluggish and heavy but not as much. I know this "crash" can happen after eating high carbs or alot of sugar, but this happens even after eating like, an omelet, or a bowl of quinoa with spinach and beans. Not carb free but not a high carb meal.
Today i had an omelet with spinach, ham, and cheese, and a tomato, and 1/4 of a bagel, and i felt like I crashed pretty hard. When I got up I felt low and kinda weak. It's about 30 minutes after getting back up, I had the rest of my electrolyte drink and abt an oz of mixed nuts, some chocolate chips and some pretzels. I feel a little better now. I feel awake.
*Awake* is the word I was looking for. I feel awake as opposed to before, when I felt like how you feel when you wake up in the middle of the night to shuffle to the bathroom.
Feeling foggy, tired, dizzy
I still have to pack and clean AND everything shower
I got my period yesterday, only 5 days after ovulation? I looked it up and apparently anything less than 10 days between ovulation and period starting is pretty short.
It started off super light yesterday and I was hoping maybe because my luteal phase was so short I'd just have a light period this month.
Nope, i woke up in a puddle of blood, in blood soaked undies. I soaked completely through a super tampon and overnight pad. It's times like these when I think there's NO way the avg blood loss during a week long period is 1-5 tbsps. In 8 hours there was at least 2 tablespoons in my underwear alone š and there had to be 3 tablespoons in the soaking wet bed pad I sleep on during my period (it literally made a 5" wide puddle under where I was laying). And that's after soaking through the tampon and overnight pad.
I don't know if I'm just more aware of it today, or if its in my head bcs i can visually see the amout of blood im losing, but I feel wayy more presyncope every time I stand. Haven't fully passed out, just a big head rush, losing sight, and just about dropping but then I come back before I'm on the floor.
I ordered a refill of my adderall (10mg XR and a 5mg) . Check CVS to make sure they're processing the prescription. The 10 mg is out of stock, and 5 mg says not covered by insurance??? I've been taking the same meds for nearly 10 years, what do you mean not covered by insurance?? What the fuck. I already called the pharmacy and they basically told me nothing, they have no estimate on when the 10mg will be back in stock. What the fuck am I gonna do?
I mean, ofc I'll call my insurance and my docs and try to figure it out, but what am i gonna do in the worst case scenario that I can't get adderall. I'll fail out of school. I genuinely think I will fail out of school without adderall. I'm lucky I have some left to even have the ability to make phone calls.
Forgot I was disabled and did a little 5 second jog to catch the bus this morning. Fucked my knee up š It doesn't necessarily hurt anymore (16 hrs later), but I can feel it.
The knee joint squished/compressed together as i landed on it, as if it were bearing too much weight, but it was just me and my lil backpack with my laptop. Its like i don't have any shocks or cushion in my knee. Is this what a blown knee is (well, an almost blown knee)? I can't have a blown knee, im 23 š It was the left knee that it happened the worst to, my right knee is mostly fine. I hope this doesn't have any lasting effects.
Sometimes it feels like my body is trying to go non-verbal but it doesn't completely. I start to dissociate and go a little fuzzy. Then I start taking really long to remember words, really long to say words, and speaking takes an incredible amount of effort. I end up sluring, mixing up words, and blending words together ("of course" + "no problem" -> "nuhcourse").
It's like, by default without the dissociation, my brain is always trying to speak on top of itself, like if I could take each word of a sentence and say it all at once, but usually I can fight it off with effort and thats why speaking is so hard for me. But when it feels like im starting to shut down it gets harder, it takes more effort and concentration to speak.
Heres another example: "we got another one" -> "we got a-one". My brain was trying to say "another" and "one" at the same time.
This is what happens constantly inside my head. I don't know what it is but it's exhausting.
Iām not sure who needs to hear this but itās normal and okay to be DISABLED by your DISABILITY.
Sometimes it is going to stop you from doing things, and thatās okay. Sometimes itās going to get in your way or make you struggle or cause problems in your life. But thatās okay, thatās why itās called a disability.
You donāt need to fight yourself or ānot let it hold you backā because a lot of times it will, but thatās the point.
I have, lodged deep in my brain, a newspaper article from probably 25 years ago now about a soccer (football) player who had chronic fatigue, and how she still played every game with a fucking IV drip on the sidelinesāphotos of her in her kit, hooked up, sobbingāand the tone of the article was this is normal and the lengths a person with a chronic illness should go to in order to continue participating in Normal Society and I have thought about that article every day of my life since, when I was pushing myself past my limits in order to finish out my minimum wage shift at a shitty job so I could get home to spend the next two days recovering in bed before forcing myself to go do it again. Rhetoric like that has done real and lasting harm to my mental and physical health. Iām still trying to erase it from my brain.
Another weird thing:
I feel like my voice is always a little bit "lost". Like I don't have a raspy or gravely voice, but to speak it feels like I have to really push to get sounds to come out. If I don't "push" then just air comes out, like a whisper almost. And I feel like my voice cracks/breaks a little more often than it should.
About a year ago I got sick and actually lost my voice (partially. It wasn't fully gone but very obviously sounded like I was sick and lost my voice).
During that, I noticed that losing my voice from being sick actually felt really similar to my normal speaking voice, just more exaggerated.
My voice went back to "normal" but i realized feeling like my voice is always 20% lost is probably not normal lol. Or maybe it is, idk
My guess is maybe something with hypermobility? I read once that hypermobility can affect the tension in your vocal cords or other voice related muscles or something like that.
guys. please
both of these simultaneously
Therapy is expensive, but there are free non-chatgpt resources out there
Free worksheets, treatment guides, and videos for mental health professionals. Topics include CBT, anger management, self-esteem, relaxation
Finch - Your New Self Care Best Friend
You feel like shit. That sucks. You Feel Like Shit is a game designed to help you help yourself through your shitty times and practice self
Introduction to the Analog Brain - Skip the intro and go to the tool - Sometimes (lots of times) (all the time), I have the urge to do
I've used all of these and can vouch for them. Stay safe, love u guys š
I feel like I'm in a constant battle with myself to do ANYTHING. it's exhausting
And the adderall used to help but now I feel like I'm beyond help. I don't even think therapy could help me. Like actually I don't know if I want to or even can keep going if this is how the rest of my life will be
I feel like I'm in a constant battle with myself to do ANYTHING. it's exhausting
I'm just remembering the one time I was at a doctor appointment, feeling pretty normal, but apparently my heart rate was going so crazy my doctor stopped and had them do an ECG on me šš lmaooo
She asked me if I was nervous and I was like "uhh no I don't think so" lol. There were no weird things going on with my heart, just a super high resting bpm for no reason. Yeahhh this is probably pots huh
Slight uptick in fainting occurrences recently. I haven't been keeping track of them at all, I think I'll start doing that again.
I'm still confused if what I experience is actual loss of consciousness or partial or pre syncope??
So like just now I stood up, I think I stretched? And then I started to lose vision, and leaned back against the wall. I remember i was trying not to completely drop and make a loud bang, so I was leaning back into the wall but my body was starting to "shut down", and I couldn't see and couldn't really think? So I think I was just sliding down the wall for what felt like a long time lol. My legs ended up in sort of an uncomfortable position, but I couldn't really feel or think about anything cause I was like, gone idk?
And that's why I'm so confused because if I was aware enough to at least try not to make a loud bang, I wasn't fully unconscious then right? But for a second or two I couldn't think or feel and was completely unaware of anything like if I was sleeping, it definitely felt like I was fully unconscious? As opposed to other times when my body goes, but I can still think a little bit, like "eww my lip is touching the floor" lol.
Idk. I saw a tiktok where someone had something happening kindof similar to me, and they told their doctor and their doc was like, "Well if you can think while you "fainted" then you didnt faint. Sometimes anxiety can make us be a little dramatic :)" And im so afraid of being written off like that.
But if they dont write me off and acrually send me to get tested for pots (i think i probably have pots)... I'm also terrified of taking the tilt table test š. People that say they don't even pass out regularly will pass out during the table test and talk about how awful it feels during and after, and if I actually DO pass out semi regularly how awful am I gonna feel on that test aauughhhh
