CurseAvoider

Feeling pretty terrible today in regards to the symptoms + others. Debating whether to call dr and ask for an appointment just to show them "yep this is how bad it is today". I can't even get up from the chair without getting nauseous, in fact even sitting it still flares up.

For those who have experience with that, should I start calling my drs office every time I feel worse than usual just so there's a paper trace of me going to the drs and complaining about symptoms?

For reference I've been seeing my dr for this problem for a year now + specialists, so there is a trace of me seeking treatment, but not necessarily of showing symptoms.

Only issue is it's friday evening and they close in like 20 minutes lol

I posted on Reddit recently about my disability and someone offered advice about what I could look at to manage it. It didn't offend me, it was really just a list, but I saw that their comment was deleted later. I think the subreddit has a rule not to offer advice unless specifically requested.

So look. It's natural to want to offer advice to disabled people or people in general because we want to help them and make their lives easier (most of the time lol)

The problem is, you can't know beforehand how it will come across. They might not appreciate it and either put up appearances or tell you off, you might convey it in a way you didn't intend and cause friction... you just can't know. Too many variables.

In the case of that reddit comment it was just kinda random advice like looking at vagus nerve therapy (I don't even know how I would begin to look for this lol), and also if you don't know where my problem stems from and where I'm at in terms of treatment, your advice is basically worth nothing. sorry but it's true. If you don't have all the facts, anything that you say will be nonsense to quote my main man (this is not true my main man is marx and his wit).

So instead of offering advice on managing symptoms, here are some questions you can ask to give your disabled acquaintance agency, and show that you trust them to care for themselves without butting into their business.

• "What helps you manage symptoms or episodes?"
• "Is there some therapy you're thinking of exploring but haven't tried yet?"
• "What usually happens at your doctor's appointments?"
• "Are some days better than others, in terms of symptoms?" (they will probably say yes, but it opens up conversation).
• "What are you looking forward to?" (Could be a double-edged sword)

These are just "small talk" questions that fit most situations.

If all words fail you, there's always a simple failsafe, my case worker is great for this. She knows she can't cure me, because that's not her job, not her expertise, not her responsibility. So when I explain my symptoms (mostly so she won't try to put me to work lol), she just agrees and says "yeah, that sucks" in more professional terms of course. It communicates that she understands her limitations, but that she still listens and understands what I'm saying. It's not invalidating, in fact it's actually validating because it's as non-judgmental as you can get.

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.