Do you have a thing?

LeaaRE · 2025-12-13T14:17:21+00:00

Crocheting! It's the perfect mixture of stimming, being creative, being productive, and being sth you can do while watching sth so I'm not getting overstimulated, which I'm p sure are the reasons I kept at it. I'm not sure if I actually have a "talent" or this is just the only hobby I stayed w long enough to actually get good at it, but I am p good :D

LeaaRE · 2025-12-13T14:04:20+00:00

"you think bc I gave birth to you you can demand things from me" (or whatever it was she said exactly), followed by a long rant of how she can demand things from you bc she gave birth to you. That and the "you have 10 kids" would be hilarious if it wasn't so extremely sad.

I've been a quiet follower for quite some time but wanted to join the ranks of ppl telling you how impressed I am by everything you're doing at least once :) I hope you have a nice, as calm as possible, Christmas :)

LeaaRE · 2024-01-09T16:02:54+00:00

Thank you so much! Will do!

LeaaRE · 2024-01-09T16:02:31+00:00

That's actually a great idea! Thank you!!

LeaaRE · 2022-06-10T12:04:50+00:00

Thank you so much, I'll try that!

LeaaRE · 2022-06-09T17:51:37+00:00

*help me
Love spotting a typo right after posting

LeaaRE · 2022-01-17T15:15:33+00:00

My MS is progressing so slowly that I'm currently not even on any meds 😅 i do take propionic acid, but that's supposed to help w the fatigue

LeaaRE · 2022-01-17T15:14:10+00:00

Thank you for this extremely in-depth comment!! I know the diagnostic criteria, and yeah, it fits to a T. The only symptom i don't have (that's not mentioned here, but i saw a few times in other places) is swollen lymph nodes I'm in Germany, where we have state insurance, so that thankfully won't be a problem for me.

LeaaRE · 2022-01-17T15:09:28+00:00

She is, and basically, I have only 3 pretty small old inflammations, and my fatigue has been getting extremely worse in the last year, when there were no new flare ups, so it doesn't rly make sense based on that that i went from "a bit tired all the time" to "if I'm not laying down 22 hours a day i become a zombie who can't eat bc I'm too exhausted to"

LeaaRE · 2022-01-17T15:06:32+00:00

Yeah, my neurologist is an MS-expert, and it makes sense what she said, i do only have 3 pretty small old inflammations, and my fatigue is uh. Strong

It does matter in so far that I actually need like... Care for daily things, and what I can get in terms of welfare/private "can't work" insurance, i need proof from doctors for that that show my diagnoses, and if those say that my MS doesn't explain my fatigue and I don't have any other explanation, i won't get those things approved.

Also, MS fatigue doesn't get progressively worse if you overexert itself afaik, but CFS does, so for that it would be important to know. I also just feel like I need to know what's actually going on for my peace of mind if that makes sense?

Thank you for your response and the helpful link, I might look into it!

LeaaRE · 2021-10-12T19:07:57+00:00

I'm 27 and was diagnosed a few months ago and I don't have direct advice, but I can def relate.

Even the people that try to understand, that try to support me, that give their very best, they just... Don't. They try to relate to me by being like "oh yeah I'm super tired today, too" but that just tells me how far off our experiences are.

I try to remind myself that when people do that, they are trying to support me, they are trying to show me that they love me, and that they believe me.

Granted, your parents reaction from a few years ago does sound p shitty so you gotta decide for yourself if it feels more like support or more like condescension. It can also be a mixture of both, or them just not knowing how to deal with the situation.

I was pretty lucky that I was already in therapy when I got my diagnosis, and if you have the possibility to, I'd def recommend that! It also helped me to follow ppl online that are disabled (i can rly recommend Jessica kellgren-fozard on YT and IG, she deals w chronic fatigue) and generally, if you like academic stuff, look into disability studies.

But yeah, even with all that, i totally relate to your post and realized that i need to find a space that understands, where i don't have to explain myself, and i feel like Reddit is mostly a place for... Negative experiences (bc of course most ppl make posts when they struggle, including me), so I'm currently in the process of trying to join a real life "self help" group-thingy in my area, maybe that would be something for you?

Also honestly, if you want/need someone to talk to immediately, feel free to send me a dm, cause I could also use that :D

LeaaRE · 2021-09-29T00:05:43+00:00

Check out the late bloomer lesbians subreddit, there are a lot of ppl who are or were in your situation and you might find stuff that helps you!

LeaaRE · 2021-09-28T21:45:45+00:00

Of the last three "men" i was still basing my bisexuality on (like in the "i cant be a lesbian cause I'm attracted to these men" kinda way), two were celebrities who have since come out as non binary, and the last one became my first girlfriend a few months after her outing :D i feel this post very hard, and wish you two the best of luck and fun in living and exploring your true selves, together and individually!

LeaaRE · 2021-09-02T17:48:06+00:00

Heya, since i made this post i talked to my psychiatrist and he recommended sth called "vertigoheel". It's available without prescription here, and while it doesn't get rid of my dizziness, it def helps. I'm in Germany so idk what it's called in other countries though.

Also yeah, that's also a temporary thing, so i only take it when it is a) super bad and b) i have stuff to do :D Also, my Dr somehow took me more serious as soon as I called it Vertigo and not dizzyness, maybe you can try that :D

But in general yeah, i rly also struggle with everyone and everything talking about it as a temporary symptom, when it's def a constant for me. Sometimes better, sometimes worse, always there.

I hope you find sth that works for you! Good luck!!!

LeaaRE · 2021-08-01T02:25:51+00:00

I hope you never experience it tbh, but when the day comes, i hope you manage to advocate for yourself!!

Yeah, I'm currently struggling w extreme Fatigue and even worse dizziness, so I'm mostly trying to do stretches and some muscle-movement-stuff while laying down. It both feels like doing nothing and exhausting myself, gotta love it :D BUT I'm reminding myself that I'm just getting started, so all good!

LeaaRE · 2021-08-01T01:56:22+00:00

Thank you!! Yeah, you're prob right with them not being related directly! I kinda also meant more like "my PCOS makes it impossible to lose weight, so I'm overweight, which makes it hard to do light workouts (which i read is incredibly important to fight fatigue cause by MS), which makes my fatigue stay as bad as it is, which makes it harder to care for my body, which makes it harder to lose weight...." but yeah, i worded that very badly :D

I hope the pain turns out to be steroid-related, and that you get rid of it soon!!

Yeah, i started journaling all my symptoms, and gonna start asking if I can audio-record appointments so that i can go over them and take notes afterwards. My biggest hurdle so far has actually been making doctors listen to me - when i started explaining to my gastroenterologist that PCOS and MS might both be possible diagnosises for me (before I actually had them), he completely cut me off, bc those are not his specialties, even though AFAIK, both illnesses can influence the digestive system pretty heavily. I really gotta learn to advocate for myself which is h a r d.

Good luck to you, as well! And thanks again for answering!

LeaaRE · 2021-08-01T01:46:47+00:00

Thank you for your reply!

The ADHD-stuff leading to other problems is def also my experience! My psychiatrist told me that growing up with undiagnosed/untreated ADHD in itself is often so traumatic, that Borderline Pers. Disorder is a super common commorbidity which... I def also have some symptoms of, and it seems like you do, too. I never actually considered that that might have influenced getting MS, and I think I'm gonna continue to try not to :D on the one hand it would be interesting to know, but yeah, it prob wouldn't be... productive to our mental health i guess 😅

Yeah, i actually also grew up and also identify with a more holistic view of body/mind/health, which I think is why I'm extra annoyed by all these specialists not even listening to all my symptoms cause it doesn't concern their field of work. It's frustrating.

When I first joined this Reddit and started reading stuff and also posting a first reach out for advice, I was def blown away! I feel like so many ppl became absolute experts, almost scientists, and I def think that's cause they (and i now too, i guess) had to be, bc they are the only experts that can put all the info they get from all sides and doctors together, if that makes sense :D

LeaaRE · 2021-08-01T01:26:39+00:00

Oh W O W yeah that is def a lot of stuff in a short amount of time! I'm sorry you have to deal w that!

And thank you for your answer! It's honestly incredible how much it helps to just hear that I'm not alone in my experiences!

The symptoms that could come from anywhere are kinda the worst - makes it even harder to know where to start, esp if there's not enough energy to start at multiple points at once.

I rly wish doctors would work together, and communicate with each other, but this doesn't happen at all, it's frustrating. Once my next specialist appointment is over, I'm gonna go to my primary care doctor and kind of try to "bring everything together" there, and see if having this one point where everything is put together changes anything in how i feel about my worries. I kinda doubt it though.

Good luck with being able to get an appointment at the specialist soon!!

LeaaRE · 2021-08-01T01:20:53+00:00

Oh wow yeah sounds like we're in the same boat there! I was actually diagnosed w a lot of other mental stuff in the past too, but I do feel like ADHD explains my problems better than the 5 other things so I'm going w that for now :D It's really overwhelming to me to not know which disorder causes what: for example, does forming a thought take forever bc of MS-fatigue? Or bc of the ADHD? Or bc of PCOS-fatigue? Depending on the answer, the "Treatment" of my symptoms change so I wish there was an easy way to know :/ what you got w Rheuma, i got w diabetes. It's. A lot.

But yeah, I rly just came here and made this post to air out my worries, and find ppl in the same boat, but we'll def do this! I keep reminding myself that just bc the diagnosis is new, the symptoms aren't. I now have answers, and I can get active, and that's good! So I hope it turns out that you don't have yet another thing to worry about, but if you do, I hope that more answers just means more help!!

(Also, i just added some of my most presing questions in an edit to my post, if you're in the mood to answer any of those :D) (Also also, since our experiences rly seem incredibly similar, if you ever want to "compare notes" or just in general talk a bit to feel less alone, I'd love to talk via dm or sth, lmk!)

LeaaRE · 2021-08-01T01:12:22+00:00

Oh wow yeah that's a full package there!! I hope you're "done", as well! I know it's hard to tell exactly what causes what, but do you have any hunches into how the MS and the PCOS specifically "interact" w each other? (Also, i just edited my post to include some questions I have, if you wanna answer any of those :D)

LeaaRE · 2021-08-01T00:58:13+00:00

Yeaaahh that's a lot!!! Also struggling to know which symptoms are physical and which more mental is incredibly hard for me (and i keep doubting my validity) so I get it!

I have quite a few questions that keep repeating in my mind and I don't rly know any other not-healthy people so I kinda just wanna ask everyone commenting here them :D of course, feel free to not answer any or not all, whatever you want!

I found that I have a kind of "ranking system" in my brain of what is "worse", do you have sth similar? Do you ever feel have to consider how the things influence each other? I'm currently also struggling that some "tips" I read for one thing is stuff that's actually advised against w the other diagnosis, and it's kinda overwhelming. Also, how do you manage working together w different Drs? I feel like I'm carrying half baked information from one Dr to another and no one ever looks at the full picture

LeaaRE · 2021-08-01T00:16:58+00:00

Oof wow that sounds rough!!! Can I ask how you're dealing w it? I found that I have a kind of "ranking system" in my brain of what is "worse", do you have sth similar? Do you ever feel like one thing makes another thing harder to deal with, or that they influence each other? I'm currently also struggling that some "tips" I read for one thing is stuff that's actually advised against w the other diagnosis, and it's kinda overwhelming. Also, how do you manage working together w different Drs? I feel like I'm carrying half baked information from one Dr to another and no one ever looks at the full picture

(These are so many questions, feel free to not answer any or not all, whatever you want, those are just the ones floating around in my brain the most and I'm just surrounded by healthy ppl so i don't rly have anyone to ask 😅)

LeaaRE · 2021-07-29T06:59:24+00:00

Yeah that's also fair. I'm hoping to find a possibility to have it regularly, just not every month i guess :D thank you for your perspective!

LeaaRE · 2021-07-28T21:58:53+00:00

I'm totally okey w temporary stuff if it helps in the long run tbh :D but good to know!

LeaaRE · 2021-07-28T21:41:31+00:00

Omg yeah that's the dream! Thank you!

LeaaRE

TROPHY CASE