CurseAvoider @ CurseAvoider @lemmygrad.ml

He him if you're wondering. Anonymous alt account. The name is from a rando

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6 mo. ago

But honestly, there usually isn’t

Exactly every disability is different of course but in my case I like being left alone when I'm feeling sick in the first place and there just isn't anything that helps. Antiemetics don't even do anything. So if I'm having an episode the best thing to do is just let me manage it and also not talk to me because I'm not listening anyway in the moment lol. At best just say "let me know if you need anything" and leave it at that.

Sometimes we don't even know the extent of our triggers or disability! I just ate some pineapple (to be fair it was a lot of pineapple lol) and found out that's a trigger just now. I didn't know that before.

I wanted my list of questions to be stuff I wish people would ask me, and also broad enough to fit in most situations, not just with friends. It's good to ask "how can I make this more accessible for you" or "what should I do if you have an episode", "what are your triggers so I can avoid them"... but you shouldn't ask because you feel obligated to, but because you want to.

It’s also funny how every expert I talk to think that the main source if my symptoms is in their specialty field

Lol same that's why I stopped listening to their theories until we do the tests. It's just upsetting for no reason. the ENT thought I may have menieres, I waited one week to do the test and one more week to see the results and it turns out it wasn't that. We still don't know what it is, but it's not menieres lol

That's a great way to put it lol I'll have to remember that one, about looking after the house.

That's exactly it, you don't select the actual style that you want, but based on how long your hair is (for womens cuts) or if you want additional treatments that all have non-descriptive names lol.

You're right, I just picked the one mens haircut option they have and they'll deal with it lol

You can't stop progress lol, if you don't know exactly what you want beforehand good luck i guess!

If nothing else these tests confirm that I'm doing fine otherwise lol. Just not sure what I'll do after the MRI if there's nothing else to test for but I'll cross that when I get there.

I've thought about it before and it's probably going to be my next step. An acquaintance gave me some of their traditional medicine and I would have taken it, but it contains ingredients that are natural blood thinners and I'm not sure how it'll interact with my thinners on top of that. I know someone who does hypnosis maybe I'll ask them if they can see me lol. It's just hard to get out of the house because even if I'm doing better right now I'm pretty sure symptoms will come back as soon as I do physical activity again. We'll see how the walk goes hopefully later this week.

Thank you comrade!

Thank you comrade. I'm not worried yet because it's been going on for a year and while it has gotten worse it's also stabilized and declining very slowly, but right now I'm also completely in the dark as much as my doctors if we will even find the problem lol. For now all I can do is be optimistic and just go to the exams as hard as it is to get there.

Just cheap printing. It's the aliexpress version isn't it? On mine the disc behind his portrait is completely gone already.

It takes its toll on the confidence (or rather trust) you place in other people. I can't say it's been all bad. I think it's definitely made me more assertive of my needs and less patient with bullshit, which I'm still trying to figure out if it's a good thing or a bad thing. Lots of stuff being rethought and overall I think I'm growing as a person from this, even if it's too early to really focus on that. Right now I live in survival mode, just day to day, planning out my weeks (plural) in advance. though today has been a VERY good day, possibly due to the meds switch, so I'm also in a better mood and not so much in survival mode lol. We'll see if it sticks. Eliquis did that too the first day and then it was actually worse after 2 weeks.

I got so used to state services being beyond abysmal than when things work I'm almost confused lol. In my last post I was saying how understanding my welfare case worker was and so far all the payments and stuff have been super timely. It's almost too good to be true lol.

Congratulations! It's the small victories.

felt absolutely terrible today before leaving for my side job appointment. I took 2 anti-emetics and had to push the apt back 1 hour just so that the medication could have time to work, thankfully the client was understanding. It's anxiety inducing to be in these situations where you feel like you're on the verge of puking before leaving because you don't know if you're gonna be able to drive, if you're gonna be able to stay at the appointment, and so you start asking yourself is it worth even trying because what if you get an episode behind the wheel.

But I managed to drive myself there with some difficulty on the road and had to take my 3rd dose as I arrived as I was still feeling it. Which also means I can't take the anti-emetic anymore today, and ideally you should space out your doses. Also as I was leaving I was starting to feel the queasiness coming back slowly so it's possible this medication is just not strong enough.

lmao knew it couldn't last long.

Strangers on the streets and people who barely know me are more attentive my needs than fucking medical professionals. If that doesn't create class consciousness within you once you experience it I don't know what will.

honestly my litmus test now is do they understand the problem I'm facing right away and do I get off vibes. I've also associated professionally with bullshitters and you think well at least they're nice so it can't be that bad! But they're incompetent. They can barely do anything. Now if you want my involvement you have to earn it, I'm gonna stop giving it out so freely and focus on myself too. In terms of health there's doctors that easily make certificates, like they barely ask anything. Apparently they're pretty well-known. If all fails I'm going to them lol.

I'm doing better physically with the medication my dr prescribed last week (upping pantoprazole from 20mg to 40mg. She also gave me anti-nausea medication but you should be careful how you take it, so for now I plan only to take it if I have a difficult episode or I know I'm gonna have one e.g. I have to go out). The first time I took the nausea medication I felt better than I'd felt since all this began. Like it reminded me that even when I'm doing "good" I'm not feeling as good as I was before the symptoms began, if you get what I'm saying. But alas it only works the first time lol.

It's moreso psychologically now that it fucks with me lol. I'm seeing my psychiatrist tomorrow so of course I'll be talking to her about it. I feel like I'm gonna have a panic attack eventually. Haven't had one yet, but I probably will if the odds keep stacking against me like that and I keep having to run in circles with a bureaucracy that doesn't want to actually solve problems. You feel completely abandoned by the state and you expect the worst in terms of how they're gonna treat your disability. All I need is to be able to say "look it's not gonna work out today, can we reschedule" but I have no expectation they will even grant me that. Because that would be taking responsibility.

The good news is she can make a certificate for panic attacks? lol

That's very likely the last resort yes. If all else fails I will have them take the responsibility of me stopping the medication.

My ribs are also hurting today with some remnant pain from where I had the embolisms so that's fun. But that part is actually fine, because I took the blood thinners yesterday evening and so I know this is just remnant pain. And it's not disabling pain, I don't even need a painkiller for it. I'm not sure a painkiller would do anything either tbh. If I didn't have the medication though I would feel like I need to go get checked out at the hospital so not taking the medication is impossible, it would cause me too much anxiety. Because how can you tell if it's just lingering pain or the embolisms coming back? IF you can even feel the embolisms. The clots can form in bigger arteries and move down into the capillaries and that's when you start feeling it, but they can be causing problems even before that and you would never know.

And then when you're disabled they still want you to work no matter what. You get no help. You get a health emergency that you didn't ask for and you get punished for it. You're expected to do everything yourself and go back to creating value as soon as possible. Strangers on the streets understand my problems better than doctors and other 'experts' do.