CurseAvoider

It's very hard to grasp what it's like to live with a disability until you've experienced it yourself. I think it's not something people just think about, and it's also just not easy to imagine even when you try to.

So here's what it's like. You live life day-to-day. You wake up in the morning knowing that you're gonna have difficulties getting through the day - depending on your disability, you might be thinking "is today gonna be a good day, or a bad day?" (that's the good one) or you might think "here we go again".

You start to plan your appointments ahead so they don't all fall on the same day, or even in the same week. Doing more than one big thing a day? Impossible. You can't go to the doctor, get groceries, and then head to your friends house. You do one thing a day tops, so you have to plan your entire week ahead accordingly. No more spur of the moment things like a friend calling you at 5PM asking if you want to grab drinks at their place, because you already did something else today and you don't have it in you to do anything else.

When the appointment comes you have some hope that you'll be able to get through it fine, but you're not optimistic. You'd rather not go because it's torturous, but the pros outweigh the cons so you still go. What used to take 10-15 minutes to do now takes 45, and you're tortured the entire time.

There are many things you need to do, like say renewing your driver's license, getting your teeth checked, getting new clothes, but you don't get around to it because you know it's gonna be torture and so you put it off for as long as you can, sometimes forever. (thankfully we have online shopping, even if it doesn't solve everything).

In my case because of my disability the kind of stuff I have to pick is if I'm going to brush my teeth, wash my hair or shave my beard. You can only do one, so plan accordingly. That's the kind of decisions I have to make daily. I'm going to brush my teeth tonight and wash my hair tomorrow, I think. But not both at once, that's impossible.

People ask you about moving out, finding a girlfriend, getting a job... you have to stop them. They don't understand because this is so alien to them. My life is focused on getting through the day, one day at a time. Currently, this is slightly more manageable -- I'm "lucky" that my disability seems to have some triggers, so I can usually stay at home without too many issues (so long as I mostly do no physical effort). Getting a job or moving out is so far out of my mind that I don't even think about it. There's no point thinking about it, because there's no answer for it. I would just be torturing myself over what my life used to be like.

To be clear I don't mind my friends talking about their lives. I'm happy to hear and talk to them about it. But there is no point in asking me about what I want to do in life when my day-to-day is thinking stuff like can I cook lunch without puking? Can I water my plants without puking? Oh, I'm expecting a delivery tonight and I know putting away groceries is one of my triggers (for some reason), so I probably should take it easy today until then, so I can put the fucking groceries away like an adult.

And then on top of that people will judge you and downplay your disability. "Just get over it", "just live with it" or "just push through and do it". I do live with it, I don't have any choice but to live with it. What takes you 10 minutes takes me 30, every time and for everything. Your commute to work sucks? Mine would suck just the same, except it would take me twice as long and the entire time it's also taking all I have in me to not throw up on the side of the road. It's dangerous to drive for too long because if I get into an episode while driving (which happens a lot) I stop paying as much attention to the road. I try not to drive during rush hour.

And the worst part is that it's not visible. People see you and assume everything is fine, so they talk to you normally while you're standing here not listening, thinking about nothing but not throwing up. They give you appointments during rush hour. They ask you to come in for an appointment that will last 5 minutes, but takes you 45 to get ready to. They see you stop walking and breathe deeply and wonder wtf is wrong with you. They talk to you like they talk to anyone else, because there's nothing about you that screams "I am this close to throwing up right now if you don't stop". And so they don't believe you have a real problem, because they don't see it. If they know you have it, they forget over time and assume you just got better. They don't check up on you, because they've seen you at times when you were doing better and assume you're cured now.

Everyone always comes with their advice, hoping there is some sudden cure that exists, because science has all the answers in the modern day. but nobody ever asks you how you cope, what they can do to avoid triggering you, or what it's like for you. They might concede you have a disability, but it's not a real disability. It doesn't count. The threshold for what counts is so high, nobody would ever be disabled if they applied this standard to everyone.

Communists are generally better about this.

Honestly I really appreciate having a throwaway account to ask these sort of personal questions to other comrades in a well-meaning community.

Here's my living situation, regardless of current disability (still not gone btw if anything it's morphed now lol)

I'm 31 and live "at home" in that the house is technically my parents'. However, they themselves work and live abroad, so it's just me and my 2 brothers living there for most of the year. Parents come back once in a while to see family and hang out.

When people ask I try to remember and say my brothers and I are housemates, basically. I feel the word housemate/roommate has a more 'serious' tone, like more grown up lol than saying "I live with my brothers".

-- Before proceeding, what are your thoughts on this so far? --

I ask because now at 30 I feel that I'm "stuck" there, still living with my parents, even though they only come back a few times a year. I feel like I should outgrow this at my age, do everything like an adult, so I'm wondering what the good people of lemmygrad think when they hear about this living situation. Is it off-putting, is it smart, or do you just not care?

I feel like I'm still living in my childhood home, in my childhood town, with my parents, even though as a kid I only lived in that house for like 3 years before we moved away for work lol. I came back in 2012 and have been living here non-stop since then, I have never rented my own place or tried moving out. I think some part of me is scared of doing it, but that's another topic lol.

I guess it's a source of shame in some aspects to still be in that living situation at my age. It feels like people my age are having their own families, have been living alone and working since their 20s, and I'm here not ready to take the plunge at 31.

Despite this I remind myself that I'm otherwise completely independent, aside from the rent situation. Well, I don't pay all the bills but people don't need to know that lol, and it wouldn't be a huge dent to split the internet bill three-way. But I pay my personal bills (groceries, phone, health insurance etc). I also get access to the car they leave here but I fill the gas. I guess that's another source of shame, when I drive and friends ask about the car and they learn it's my parents car lol. I'm not sure they even care, but I feel like I'm not performing up to expectations, you know? Like I'm seen as a kid, or someone who refuses to grow up and take responsibilities.

Things you would only post from an alt account lol.

The one thing they don't tell you about pulmonary embolism is for a time it makes you anxious about everything. It really pulls your confidence out of you. I don't know why PEs specifically, but almost everyone reports it.

Of course mine happened a year ago, so I'm well past the initial stages. I just feel like I didn't have the opportunity to recover fully as my other problems (the nausea vomiting medical mystery) happened so soon after. Haven't been able to go back to the gym since January, and I could barely go once or twice a month before that.

On top of that my symptoms are coming back stronger. I was brushing my teeth just earlier + mouthwash and that was enough to get me heaving for several minutes. I once again had to gather all my inner strength to stop myself from throwing up. After ~2 months of doing relatively better, it's back to being essentially disabled. I kinda saw it coming, I noticed it over the past few weeks.

My hairdresser appointment is tomorrow. I'm excited because I really need it, I haven't had a cut in 2.5 years as I was growing out my hair and I need it cleaned and cut shorter. I'm thinking chin length.

But on the other hand I'm just imagining myself coming in tomorrow saying hey so, I'm on blood thinners so if you accidentally cut me let me know so I can do my thing (press down on the wound for a few minutes), also we might have to take breaks so I don't puke on your floor, also I need a shampoo because I haven't washed my hair yet this week, also I know you only have 35 minutes with me. lol.

I have to MRIs scheduled this month. They found two spots on my liver during the CT scan but they're not concerned, they think it could be an imaging artefact. The other MRI is for my brain cause they have no idea where to look anymore. My dr said after that we may do a hormonal assessment and after that I don't know, guess I'll get there when I get there.

I also ordered a medical bracelet. They're not really seen often in Europe, but I feel like it'll be beneficial. You never know, I mean, not just if I get into an accident and can't respond, but also if I forget to let someone know about my medication when they should be aware.

I also need to get my teeth cleaned at the hygienist but in my condition forget about it. Can't get anything near my mouth for more than 30 seconds lol. Been fantasizing about it though, that's how much I appreciate the small things in life now.

I started growing my hair out before I got sick, and then wanted to get a cut last year but, yknow, everything happened lol.

Anyway since I'm doing better at the moment I'm ready to go get one but all stylists use an online appointment scheduling thingy and you have to select your cut there.

I assume men's haircut is fine, but just wanted to make sure. Is it enough time? Are they going to complain because my hair is long? It's not super long, upper back length something like that. I want to bring it back to a convenient chin-shoulder length.

I think I'm just gonna take a mens haircut and let them deal with it lol. It should be enough time for a basic cut.

But also happy to hear some tips if you have cool long hair advice to share.

But as always I remain ambivalent lol

I got the test results back and everything looks good except for some strabismus which I've known about since I was a kid, it's not really news to me lol, and the slightly lower reflex response from my right side which they found during the test.

But this means it shouldn't be menieres because it doesn't present like that.

So on the one hand it's good, on the other man i don't know. Each time we thought it was something it turns out it was nothing. Just a complete phantom illness.

The weird thing is I know two people that have the same symptoms I do, also without any causes. They're much older but still, it's weird right? A syndrome of just always feeling nauseous and on the verge of vomiting and they don't find anything that causes it.

I think it's worth continuing the medical tests. But also I'm not expecting them to find anything anymore. Everything is gonna turn up fine which is great, but not really helpful either. I'm also lucky that currently I am doing much better. No idea how long it'll last but I can leave the house now and go to my appointments as long as I take it easy and slow. I probably couldn't be out for more than a few hours though.

I think my two options are accepting this is either caused by stress, or by covid somehow. These are my best answers. Just chalk it up to a best guess.

I'm only worried about two things, that I don't know what this means going forward, and that I don't know if doctors are going to stop believing me eventually if they can't turn up anything. Like what do you do with your life

I went and did the caloric test yesterday. Honestly it wasn't so bad, I can definitely imagine that my experience was milder than others, but the way you hear about the water in the ear thing makes it seem like it's torture. One website even said you should probably get someone to drive you home afterwards lol. It was perfectly fine, the noise when the water first hits your ear is the worst thing about it and it lasts a split second.

Anyway the tech couldn't really tell me much but from what I saw my reactions (it's a whole battery of tests) are too mild to be menieres. I'm seeing the ENT again next week to discuss the results but at least it's probably not that. At most I have some diminished capacity in the right inner ear but just a little bit, I doubt that's cause for concern. Audition is apparently perfectly fine.

I have a CAT appointment in a few hours for an abdomen scan, ordered by my GP. I get the feeling nothing will come out of it either, but we'll see. I forgot what we're looking for this time but it's not gastric issues. Then after that depending we'll be doing an MRI, which I think is a good idea - I don't know why, but I can feel that it's a good idea to get one or talk to a neurologist. But if the MRI comes back negative, then we're out of ideas lol.

I guess if that happens I'll have to say that it's caused by stress or anxiety or panic lol. Thankfully I'm doing a little better these days - still not great, but good enough that I can do chores around the house, and I can walk outside without getting to 99% puking. It might go up to 50% so it's not cured by any means, but it's manageable. At least it allows me to get to the appointments.

I also saw vestibular migraines which could be a contender but tbh the dizziness is a tenuous link that we're testing out because we're out of ideas. The real problem is the constant, a-draft-could-make-me-puke nausea. And I'm not sure people get year-long endless migraines.

As part of trying to isolate a cause for my problems I went to see an ENT yesterday. I last saw him in late 2023 for random vertigo episodes, at which time he found an imbalance but no cause for my vertigo. Since the PE the vertigo has returned, 3-4 times per year or so. It seems obvious to go see an ENT with this description but the symptoms are so general that it was also obvious to go do a gastroscopy and blood tests.

I barely spent 10 minutes with him yesterday lol, but he immediately said that based on everything I said it was likely menieres. He did cancel another appointment to test me on Monday so that was nice.

His theory as to the random nausea is that my inner ear is affected but my body works to compensate, so I don't notice it, but it still causes nausea (through the compensation I think?)

In any case he was quite sure of it, apparently everything I told him fit with menieres. I'm trying not to think too much about it until I get the test done, then I'll probably have a ton of questions about it. And if it's not that, we're back to square one.

I'm super tired these days also, going to take naps in the morning or afternoon, but I also go to bed early and in consequence wake up early lol. But idk. It feels like I'm just eating and sleeping these days lol.

I say not anymore but to be honest I never knew what the problem was in the first place. First we thought it was the blood thinners, now I've tried literally all of them and I still have issues, so of course logically it means the thinners are not the problem. Or are they?

I've had a pretty bad week all of last week, actually since I went to see my dr on Monday last week. Socially though my symptoms are mostly inhibited, which makes it hard for people to see how bad it gets and I think they either don't really get it or outright think it's not as bad as I make it out to be (how can you make "it takes me 20 minutes to put on a t-shirt because I have to fight the urge to puke at every step" clearer). I was doing fine from the moment I got into my dr's office, but upon getting home symptoms came back pretty quickly. From Monday up to Friday evening I basically even had nausea while doing literally nothing (watching youtube videos, which sometimes even that is too much and literally the only thing I can do outside of watching paint dry is read a book).

I invited some friends on friday to celebrate one year of the PE and right up until they rang the door I was actively fighting not to puke, outright thinking "should I get it over it now and hopefully that way it gets better when they're here?". Just as I was thinking about it the door rang, I went to say hi, and 2 minutes later the symptoms disappeared for the entire night. I was actually doing pretty good, because even when I don't have nausea I can kinda feel something is wrong in the abdomen area. But I digress.

Since Friday night though? I've been doing pretty well. I feel like never before. But I also feel like it's gonna come back, because it's been going on for a year now and I don't believe it will just get up and leave like that out of nowhere.

The one thing that has changed in regards to the meds is I got back on Xarelto beginning in May after around 1.5 months without it.

What do you even do in this situation? When I tell people I'm doing better for the past 3 days only (to be clear) they think I'm cured. But I can also feel that physical activity such as walking triggers mild symptoms again. I don't think it's as simple as "oh he's doing better job done all good move on with your life".

I'm grateful that I've had some past few good days. I want to get better. But I also know with 99% certainty I'm not actually better, and doing anything will trigger back the symptoms again and I'll be back to square one. If the weather is good this week and I'm still feeling good I'll try to go take a walk and see how I fare, that's about the best troubleshooting I can do on my end.

What is even the problem at this point. It's not the medication but changing the medication makes things better for a little while. Social situations (depending) inhibit symptoms for a while. I say 'depending' because since a couple months ago going to my therapist does not stop the symptoms, she actually saw once how difficult it was for me to even talk (couldn't get more than 5 words out without getting the urge to puke). It's like, I can puke on the fucking side of the road while walking there, breathe heavy in the waiting room, and then as soon as they call me over I'm suddenly all good. There is a clear link with physical activity (of any kind) though. Sometimes after eating I also feel mild nausea and sometimes I don't. No idea what that means either.

My best guess at this time is something similar to how you can puke if you exercize on an empty stomach. This is your body's way of saying "I don't have the nutrients currently for what you're asking me to do so take it easy". In social situations, my body may decide that it needs to prioritize this over trying to send me a message or expel whatever it wants to expel that it can't. I have no idea but it seems to make sense to me.

idk if anyone remembers me as my last post was 2 months ago but it's in my profile history if you need context.

Long story short, I've now tried literally every blood thinner that exists. None of them solved the problem - actually, Xarelto, which is the one I started on, is also the one I tolerate best.

This likely means that my problems are not a side effect of the medication but caused by something else. And we don't know what, so that's cool.

I have more tests scheduled (in the 2 months since my last post I basically tried the last 2 blood thinners, that's how long it takes lol) to look at other causes but my dr is pretty much at a loss and so am I. We're just taking stabs in the dark trying to find something on tests.

The funny thing is I was talking to my neighbor today and they told me the husband's sister-in-law has the same problem as me apparently, except no clot event prior to that. But she also can't leave the house because it causes her to have nausea and vomit.

But it's such a general symptom, where do you even begin with it? Looking things up online I saw a medical case of someone around my age who had a lesion in the cervicals (iirc) and developed a similar problem from it, vomiting up to 25 times a day. It's the most generic symptom which makes it hard to pinpoint a cause.

So we're kinda back to square one, but at least now I can get certificates if I need them because it's not caused by the medication anymore so they can't argue lol.

I invited some friends over on Friday to celebrate one year of the embolism, which is technically on May 13. I probably won't be able to stay too long, but I think it's important to still have some social contact in these situations. And it's funny.

That's right, you thought this was over, but it's not!

I went to see the new hematologist yesterday. I didn't have to explain too much, she basically agreed straight away that this was not a situation I could continue to be in. To be honest back in January I was reconciled with being disabled like this for the rest of my life, but now not so much. But it's not because of anything fancy, it's just that the side effects (or rather the intolerance to the medication) is getting noticeably worse with time and who knows how much worse it'll get in 6 months, one year, or even 3 years? I can't "coast by" on this medication any longer.

She got me started on pradaxa which my previous hematologist never even mentioned. I'll be trying it out for a month and we'll see how it goes. I'm not expecting a miracle, but it works on a different coagulation factor than Xarelto and Eliquis, so maybe I'll tolerate it better. If not, there's still the old blood thinners (the anti vit K) but it's kinda like being diabetic, you have to manage it for as long as you take it which for me is probably rest of my life. I'm taking it one week at a time though, fingers crossed lol.

The new hematologist also said that my xarelto dose of 10mg a day was too low for my case and the previous doctor shouldn't have recommended that lol. IIRC we dropped to 10mg because we wanted to see if a lower dosage was more tolerable but when it was clear it didn't she shouldve told me to go back up to 20mg?? I don't know if that makes sense lol. Basically I've been on 10mg xarelto since december and after a month when we saw my tolerance didn't improve we should have gone back to 20mg but we didn't.

Oh, since she recommended a higher dosage (even confirmed with her colleague), I also asked if it was safe for me to stop taking the blood thinners for a day or so, as the previous dr said that I could elect to stop it for like a weekend if I was going somewhere that was a concern, e.g. going skiing or smth. New dr said no, don't do that lmao. Only case it would make sense to do that is if I need surgery.

Much better experience overall and she takes it seriously, but I think she also takes it seriously because I didn't ask about disability. Once you do that they put up the stop signs and change the subject. In her opinion we can do the older blood thinners no problem, which my previous hematologist said we couldn't do. I trust the new one more lmao

I was feeling pretty anxious all of last week because I had my first appointment with my welfare case worker today. If you've been following my posts you know why this is complicated for me. It's not just the welfare appointments as well, they normally want you to open an unemployment file as well, and both of these give you monthly appointments every month. On top of all the doctors appointments I have to schedule and the problems I have that make it difficult to do too much in a week.

Thankfully my case worker was super nice and understanding. I explained my health problems (that the doctors say are not health problems), and she basically instantly waived the unemployment requirement and told me to focus on my health. I do have an appointment with her at the end of april to keep her updated, but this is manageable. she also asked if I preferred the afternoons and I said yes so I can manage my medication better (I had to wake up at 6am this morning just for the anti-emetics, and chose not to take the stomach acid inhibitor because I have to eat 1 hour after taking it. I can do that, but only for one day at a time).

That's a huge load off my mind at least and I feel this rollercoaster is finally stabilizing. I have an apt with my therapist next week. I was yelling at her in my post last week but honestly the rest of the time she's perfectly fine. It just bothers me that despite being a doctor she can't prescribe me anything or make a certificate for anything. But they have their specialty and don't/can't stray from it.

The week after that I have the apt at the new hospital for a second opinion, and that's basically my month of march lol. I can only do like one thing per week, maybe 2 if I'm having an especially good week (but you never know if it's a good week until it's next week), so it helps just being able to space these things out and that's what I was worried about. There's still a lot of work ahead for me, including actually fixing these symptoms lol, but at least things are progressing in some way.

I guess you have to celebrate the good times when you can. For anyone who might be ardently following the adventures of Curse Avoider, I realized that I'm doing weirdly well today. No symptoms whatsoever. I had a 2h convo with a friend about their video game without even realizing until after it was over that I didn't get queasy once. After that I took a shower and brushed my teeth -- brushing and mouthwashing usually gets me on the brink of puking, but nothing either.

However I'm also not too optimistic about it. It's possible that I'm just in a good period, or having just one good day. Tomorrow may be entirely different. If not tomorrow, then next week will probably swing back the other way.

I wonder if it has anything to do with the 2 anti-emetics I took on Wednesday, but they would probably be out of my system by now, 48 hours later. Or maybe it's because I took my blood thinner right after eating, which I usually don't do. I usually take it maybe 15-30 minutes before or after eating at the very least.

Definitely will have to repeat the last one again to see if it helps. But it can also be completely coincidental -- I also had some good times last year without symptoms, and then they came back a few weeks later.

I'm supposed to meet up with someone tomorrow, make some pocket money (private IT work, it funds my caffeinated drink addiction lol) so I'm hopeful I'll be able to do everything in one sitting because it's gonna be a long job.