#Meniere's Disease

[gabbagepatch]

Listen guys, you don't need to look nice to go outside. Your health is more important than appearances.

I just went on a walk in my pajamas, greasy hair in a shitty bun, acne, and a pair of new balance sneakers. Cars passed by and I said hi to everyone who passed. Did I feel self-conscious? Of course, but it was worth it.

Now I feel a lot better, because I didn't A. Overextend by forcing myself to shower/get dressed/put on concealer beforehand or B. Avoid doing anything because I felt like a mess.

Go outside and be however you are. It's not your job to look good to random strangers, you deserve to go outside.

[bluenoo42]

Shoutout to people with balance disorders

I'm currently at home and not able to work today because of a flare-up of my balance disorder (bilateral vestibular hypofunction/loss). Apparently, the flare-up is happening because I had COVID-19 a few weeks ago, and it has caused my brain to de-compensate for my lack of vestibular function. This is (according to my doctors) super common for people with this after they have any sort of illness.

Because it's not a painful condition, I think people forget how debilitating balance problems can be. The vertigo, the nausea, the blurred vision whenever you move your head, the falls, the people thinking you're drunk, the difficulty explaining your symptoms because they are super weird, not knowing whether or not you need a mobility aid because your legs are fine but you still can't walk in a straight line.

To anyone who has never experienced this, trust me when I say it's really bad. To everyone with a balance disorder, you're all legends and super cool, and you're not alone with this. To all the disabled people out there, don't forget balance disorders this disability pride month!

[scary-lasagna]

How would the creeps react to their s/o who has meniere's disease? I have it and it makes life extremely difficult at times

Jeff

The diuretics are an inside joke in your relationship, the medicine makes you constantly run to the bathroom throughout the day to balance the water build up in your ear.

"Go piss, girl!" He will yell, no matter your identity.

And he keeps extra meds in his nightstand incase you run out before your next subscription, nicking them from whatever houses he's assigned to.

He might sneak a Zofran sometimes because he likes the taste and feel of them when they dissolve.

But he's not very keen on giving up salty foods, and whenever he cooks he'll cook separately so he can salt his own food and giving you none/less depending on the dish and what you've eaten that day.

He doesn't pay attention very well, so you'll be bombarded with questions about what you've ate, if you're stressed, and how you're physically feeling.

He even has a little writing tablet for when your hearing isn't the best, but often just uses it for when he's across the room and wants to show you a stick figure drawing of two of you holding hands.

Lost Silver

Lost Silver is such a sweet s/o, he's very affectionate and considerate, and he's always looking out for you and your health.

He has a setup for his consoles, filled with beanbags and plushies, as well as cup holders and blankets.

And you have a designated spot sitting next to him, either playing together or watching him play on particularly bad days. This way, you can spend time together without straining yourself, and you don't have to get dizzy by standing and walking around, or laying down on the bed and getting nauseous.

Sometime ago, Silver actually bought a little gumball machine full of Zofran, and has timers set to ask if you've taken any daily medications you might be on.

And he'll play a game with one hand and give you head-scratches, tummy rubs, or back scratches with the other. Or if that's making you feel worse, he'll stay by your side nonetheless.

He'll keep you calm and stress free to prevent episodes before they start, but he's working on learning a little bit of ASL to help when your hearing fades in and out.

He's not a huge fan of salty foods, outside of ramen and soup, but he'll try to find ways to adjust to your taste.

[absadjournal]

I hate vertigo

[edenwolfie]

well i think managing 6 months between attacks is pretty dang good considering I started at 1-2 a week in the beginning. however this attack hangover shit still fucking sucks. would love to have my hearing and balance back. that'd be nice.

[watercolourferns]

Reframing the "I'm exhausted, why am I so lazy??" thought I've always had to "I'm exhausted because I have fibro and all I can do is manage it for today" has lifted a huge weight off my shoulders.

I wanted to go get tuna to make some spaghetti thingy Fiancée bought, but I can't. I'm literally falling asleep standing up. So I was like "I'm so fucking lazy, just grab your cane and go!", but then our inner protector stopped me and made me realize... it's not laziness. That's just how we cope, masking it as laziness. It's tiredness, pain, and a mild agoraphobia we get when we have brain fog, be it from mental issues or from the Fibro or the Meniere's (yes, the pain from Meniere's can give you brain fog as well).

It's making things so much easier to handle now that I know what it is, it's scary. It's like there's impending doom, and I hate that feeling... but it's also very liberating. Because I understand myself better and I can be less harsh on myself... I'm just scared others won't be.

[solarsleepless]

watching stuff w headphones when ur hoh is actually so weird. wdym theres music playing here and i never knew

[heretherebewolves]

Hi, I'm here to rant about ableism.

Y'all ever noticed the things on train platform floors - numbers denoting carriage number?

Ever noticed a train actually line up with them?

Even better - most trains (in my experience) have letters, and it's anybody guess which end is gonna come first.

This, my friends, is why, despite having a reserved seat, I am currently sat on a vestibule floor.

I have vertigo. Moving on a flat stable surface is more often than not like trying to walk on a bouncy castle. Throw in a floor that moves, and my outcomes are typically either hitting the deck or throwing up.

Can we sort this shit out? I paid enough for my fucking ticket - never mind that I cant feasibly take my wheelchair without it taking way more effort than the relief I'd find - I should not be forced to sit on the floor because y'all can't figure out how to make the right markings on the ground and actually use them for their intended purpose...

(Note - every other seat was showing as booked, and I'm not enough of an asshole to swipe someone's spot just because UK transport is shitty to disabled people.)

[rumandstars]

It’s amazing how much better you feel when you aren’t throwing up blood every other week. Whew, those Ménière’s episodes were really wiping me out. I was ready for death just so I didn’t have to see/feel this ever fucking again: 🌀

I’ve had well over a hundred episodes the past five years, terrible, it’s hard to understand the level of medical trauma with this illness. Every episode = like being tortured mentally and physically, not exaggerating. Uncomfortable, painful, exhausting, disorienting, debilitating, scary because you worry about your esophagus getting long term damage from uncontrollable vomiting + there’s always a chance you could end up hospitalized due to dehydration. Ménière’s Disease, the illness that won’t kill you (probably), it’ll just make you wish you were dead.

This has been my best year in five (or six?) years…ahhhh. I’m so relieved ugh. Still have some symptoms like lack of balance, hearing fluctuations, and occasional dizziness upon waking but the extremely debilitating spells seem like they…*gulps nervously*…are starting to pass…

Eeee I wanna get back to living life. I’ve lost so many years to this illness! It’s been a hard road but I’m still here.

[crowsblogs]

Me: so what's wrong with me

My ENT: well, you have a balance disorder

Me: what kind

My ENT: -never elaborates-

Rant: Bro, how am I supposed to be proactive in my health care when I'm not even told specifics. The most he's told me is that it isn't bppv! He mentioned menieres before, but said it'd take a lot of appointments to diagnose & didn't further do anything. With all of the symtoms and tests it all DOES lead to menieres, but how am I supposed to get a diagnosis if my ENT doesn't seem to want to do anything?

[gabbagepatch]

Having subjective symptoms is very isolating because there is no way for others to witness what you're going through. They just have to trust you and you have to trust them to believe you. I know everyone in my life believes it, but they don't get it. I expressed to my therapist that I feel that all of these symptoms begin rattling around in my head and it creates a barrier between me and others.

My world: hurting, trying not to show it, coping with pain, fearful, etc

Their world: normal, uneventful, happy evening

It's very difficult to have something happening to you that nobody else can see.

[dk-thrive]

A lack of understanding made into a mouthful of air. We know that something is wrong, but not why.

John Cotter, Losing Music: A Memoir (Milkweed Editions, April 11, 2023) 

[riverageleis]

Having a chronic illness is a wild ride. I was up at 2311 after 3 hours of sleep. I take Klonopin before bed. If I take .5mg I'm dumb all the next day, so I take .25mg and pray to Hypnos. Some days he grants my prayers. On other days he refuses. He's refused this week. No amount of rest has assuaged this bone-deep weariness. No cocktail of my medication regimen has touched the anxiety, aches, dizziness, and migraine. My jaw keeps subluxing in my sleep. I wake up and have to put it back in place manually. My therapist wonders if it's all the stress from the last several months. I was stable for 4 years with my illnesses. All of them. I got covid a year ago and every day has been a Sisyphean effort against the worsening symptoms. I constantly want to give up. Succumbing seems the best option. I just can't seem to, tho. It's always one more breath. One more step. One more sleep. One more meal. How many 'one mores' do I have? That's the question.

[gabbagepatch]

I downloaded & tipped the creator and omg it actually has some good stuff in it! Some of it is literally “eat ramen” but most of it is actually so doable and sounds yummy. Glad I have this for when the flares hit.

People with low spoons, someone just recommended this cookbook to me, so I thought I'd pass it on.

I always look at cookbooks for people who have no energy/time to do elaborate meal preparations, and roll my eyes. Like, you want me to stay on my feet for long enough to prepare 15 different ingredients from scratch, and use 5 different pots and pans, when I have chronic fatigue and no dishwasher?

These people seem to get it, though. It's very simple in places. It's basically the cookbook for people who think, 'I'm really bored of those same five low-spoons meals I eat, but I can't think of anything else to cook that won't exhaust me'.

And it's free!

[watercolourferns]

So, Difenidol stops nausea and vomiting and treats vertigo, Betahistine treats Meniere's, BUT CAUSES DIZZINESS, and then Cinarizina ALSO CAUSES DIZINESS PLUS CONFUSION AND DISORIENTATION.

WHAT THE FUCK?! They're all for treating Meniere's which causes vertigo... BY CAUSE MORE VERTIGO?!

...Please, someone put me in a cyborg body now...

[solarsleepless]

my tinnitus loud as fuck!!! girl shut up!!!