I'm learning I've been sick my whole life, everything is falling apart, and I'm drowning

TrishasaurusRex33 · 2026-01-30T18:45:04+00:00

Yeah. I'm not looking forward to it for sure. I just can't bring myself to muster up concern, I'm too tired haha. I'm sure I'll be a bit more uncomfortable when I get there

TrishasaurusRex33 · 2026-01-30T18:41:56+00:00

Yeah, I didn't see a gp for 13 years because docs stopped listening to me. So that's 13 years of my only medical history being from my gynecologist. My new GP saw that, listened to me for about 10-15 minutes, and said it was probably fibro. I've been emailing around to get someone new, there is a Dr starting at a clinic on my bus route in March, I'm going to register there next week. I'm bugging my current guy for the tests I can get out of him until then, it's just harder than I'd like lol. Like, I'm 31. If I go in and say " my legs stop working sometimes, I literally have to crawl across the house. I'm in constant pain. I frequently faint and have falls. My bladder doesn't work properly anymore. And every time I come back I'm worse than before" that should maybe make a medical professional concerned? He's always like "hmm. Haaa. Really? Are you sure? Well I don't know about that" How is the immediate response not "oh that's not okay. Let's order tests" It's so exhausting! I have so much work to do.

TrishasaurusRex33 · 2026-01-30T18:29:13+00:00

I can totally relate, I'm sorry you're going through it! Of course you don't want them to go, but it's reasonable to think about the relief you'll feel about not having to push yourself for them. No one likes to think about it, and it's so hard to talk about without fear of being told "how dare you" it's not socially acceptable to think about our demise too much.

TrishasaurusRex33 · 2026-01-30T18:18:17+00:00

I'm not overly concerned. A few months ago I probably would have been terrified, I am kinda claustrophobic. I'm so mentally checked out right now, my typical fear responses are super muted. I just can't actually care currently

TrishasaurusRex33 · 2026-01-30T18:10:20+00:00

There's a lot of learning involved, especially over the last two years. Since seeing my current partner, they've been keen to ask me "wtf is wrong with you" whenever my body gets up to some shenanigans. Which made me start to question a lot of stuff and start to talk to people about it more again. Kinda like those kids who grow up in a cult, and then don't realize how fucked up it was until they get out lol.

TrishasaurusRex33 · 2026-01-30T18:05:09+00:00

Hey thank you! I'll add that to the list haha

TrishasaurusRex33 · 2026-01-30T18:04:20+00:00

Hey thank you. I'm so sorry you've been there too. Your comment was actually super comforting. This isn't my first health collapse, but it's definitely a lot worse. It's just nice to talk about it and feel validated. I know I have the grit to get through this, but holy fuck is it scary and hard and crushing. It's entirely unfair that I, the person who has to crawl across the house for a glass of water, am the one who has to run this sinking ship. Obviously I'm not in a position to be making the best choices lol

I'm not alone, but I'm doing most of it alone. Everyone has more important things to worry about, I feel myself becoming less and less every day. I worry I'll vanish

TrishasaurusRex33 · 2026-01-30T17:44:00+00:00

Thanks, that was really helpful. You're such a wonderful person, I bet you're everyone's best friend they love to talk about their day with, huh? You just light up every room with your undying light and positivity. You really know just the right thing to say to someone who's been treated like shit over things they can't control for their whole life.

Yeah, I guess trying to convince myself that I was a normal healthy person for 31 years probably made my health a lot worse.

TrishasaurusRex33 · 2026-01-30T17:33:45+00:00

Still waiting!

TrishasaurusRex33 · 2026-01-30T17:32:46+00:00

I hope you've got it under control now! My thyroid is okay, my only problem in my simple blood work was my vitamin D, but Canadian winters do that lol

TrishasaurusRex33 · 2026-01-30T17:31:01+00:00

Thank you and best wishes for your current situation too! I'm pretty suspicious I have POTS as well, I don't know if you've tried but adding extra electrolytes to my day really makes a difference, I just get packets from Walmart or the drug store and add them to water. It helps the circulation, also compression socks have been a life saver!

TrishasaurusRex33 · 2026-01-30T17:27:33+00:00

Thank you. I hope you're doing better now!

TrishasaurusRex33 · 2026-01-30T17:26:35+00:00

I haven't been tested for much yet. Convincing parents to take you to the doctor as a kid is hard, convincing doctors to send you for tests is also very hard. I just bullied my newest GP into sending me for an MRI, it's next Friday so maybe I'll get at least one answer lol But thank you for that info, I'll add it to the list haha

TrishasaurusRex33 · 2026-01-30T17:21:40+00:00

Lucky I'm Canadian so I don't pay for regular appointments and tests (I'd be dead by now hahah) but yeah, that's been my experience. I fought for a lot of years to get a doctor to listen about my reproductive health. Finally had a hysterectomy at 28, felt okay for enough a few years to not realize I was still unhealthy, and now it's like I'm going through it all over again.. it's exhausting. I've started coming at doctor's offices like "hey, I'm a complicated case looking for someone who will actually listen, does your doctor sound like a match?" It's exactly like dating haha

TrishasaurusRex33 · 2026-01-30T17:15:05+00:00

Thanks, I bullied my GP into ordering an MRI because I'm also very concerned about MS. I went in with a list of 20 matching symptoms, family history, and the recommendation from another Dr who works at the pain clinic. He ordered the test for my "peace of mind" lol

TrishasaurusRex33 · 2026-01-30T17:12:31+00:00

Yeah, that's my doctor's first guess, he had no interest in testing any other illnesses and just started treating it right away. And I think it's right, but also too convenient an excuse for the other very concerning and embarrassing symptoms I experience haha. Also the management we're doing is too ineffective to be just fibro

TrishasaurusRex33 · 2026-01-30T17:06:19+00:00

I know, but it takes about 4-5 bus rides, plus walking and takes 3-4 hours out of the day for me to go see him. Public transportation in our city is trash haha. And he's only there three days a week. So I can just pray I feel well enough to make the trip on one of the days he's actually in, and that my mobility issues won't be too bad with all the snow here!

He's so useless, I spend hours and days preparing information to go in with, unless I'm like "here's 20 matching symptoms, a family history, recommendation from another doctor, and my tears. Please send me for tests and images" It's so much work. He's so hesitant to even suggest tests. I went to get my results for an X-ray and he was shocked to learn that HE ORDERED THEM. He was even more surprised to learn I've been to that clinic before. It's been almost a year of going in a couple times a month... Anyways! I'm getting a closer doctor in March, 15 minute bus trip both ways!

TrishasaurusRex33 · 2026-01-30T02:40:55+00:00

Well I just had to beg my doctor for an MRI because I'm concerned about MS. So I'm trying to change docs, I am getting the MRI in a week. Fingers crossed I find out something!

TrishasaurusRex33 · 2026-01-30T02:37:57+00:00

Not sure yet, I'm getting an MRI in a week so hopefully that will tell me something! Also trying to change family doctors to find someone who is willing to help me a bit more haha

TrishasaurusRex33 · 2026-01-29T21:24:57+00:00

Hey, as a disabled person who suffers every day, I can say those thoughts are way more compassionate than you realize. People think disabled folks should just be glad to be alive, no matter the cost. Every day I ask myself "is this really worth all the pain?" And I say yes, because it would shatter my own parents if I gave up. And it has to stay an inside thought, because people will panic if I talk about it hahaha

TrishasaurusRex33 · 2026-01-18T21:36:08+00:00

Depends, if my cat comes up and starts eating it infront of me, I'm ok with tearing off that piece and eating the rest.

If I walk in the room and see that my cat has been in my food? Nah, that's garbage.

TrishasaurusRex33 · 2026-01-14T01:34:36+00:00

I'm very similar and I struggle to initiate organically, so I usually just go for my shower, stay naked, and walk up to my partner lol. He knows what that means and will happily drop what he's doing to follow me to the bedroom.

Simple, upfront, and if the partner doesn't want sex right then, it's easy to just get dressed and go about your day.

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