menieresstrong

I got sick five years ago and was fortunate enough to have a mother who's an interpreter and knows a thing or do about everything ear-related. I also had a good doctor and did my own research about Meniere's disease online. However, back then it never occurred to me to look for support in social media. I never read blogs about Meniere's disease or searched for any groups or networks. I was pretty much alone with my disease, but I usually prefer it that way. I'm weird and isolated like that. I know that doesn't work for most people. Here are some things you can do if you've recently been diagnosed with Meniere's disease, or if it's something that you might have and you just haven't been diagnosed yet. Do your research. Meniere's disease symptoms also fit some other conditions, so make sure you know what is happening in your body. This way you can provide your doctor valuable information that can help him help you. If/when you get your di

Over the years I've come to some realisations about things I'm no longer able to do due to having Meniere's disease. Before you read any further, please remind yourself that this disease is different with everyone, and what's not working for me might be working for someone else. This post is also not me complaining about things I've had to give up. I'm just presenting some facts here :) Rollercoasters. Ah, I used to love going to amusement parks and riding rollercoasters and other rides. I LOVE amusement parks. Now, unfortunately, my balance goes way off if I get on a ride, so I no longer have to spend crazy amounts of money on those wrist bands... Walk down the stairs without holding onto the banister. I still have good days when I can just run down the stairs with no problems, but most of the time I need to hold onto something. If it's dark, I definitely have to be careful on the stairs. Function well without proper sleep. I need my sleep, I reall

Let me just say this: Meniere's disease sucks . It really does, but there's nothing I can do about the fact that I have it. I can't make it go away, although I can manage it. There's no known cause for it, so I can't tell you what to do so you won't get it. In some cases it's hereditary, and in some cases a person's just shit out of luck. That's the wording my co-worker once used. She asked me, "So does it run in your family or were you just shit out of luck?" I was just shit out of luck. But... if I can't make it go away, why wouldn't I just try to live with it with the best of my ability? Meniere's disease has made my life better in many ways. I could live without the dizziness and especially the vertigo (which I don't get a lot anymore, thank goodness), and I hate it when I get pressure in my ear. But when it comes to my hearing loss, I find it the least of my worries. I got used to the idea of a hearing aid before I go

How many of you are comfortable talking about your illnesses with other people? In Finland people seem to have this weird habit of listing everything that's wrong with them, and then we have to top other people's problems. Hahaha, I have more issues than you! I know, we're a weird people. I'd rather keep my mouth shut. I only tell people about my Meniere's disease if one or more of the following conditions are met: It's somehow relevant to the situation at hand I can offer information important to the other person because of my disease It somehow affects our interaction at the moment They ask It comes up naturally in a conversation, never forced  I'm not ashamed to have Meniere's disease, nor will I ever apologize for it. I can't help that I have it. But I'm not comfortable talking about it just because. I'm not telling you about my disease to get sympathy points from you, because frankly, I don't need them. I'm also no

I had never heard of Meniere's disease before I found out I have it, so it wasn't really realistic for me to expect others to know what was going on with me. When I started telling people I have MD, the most common replies were: "Okayyy..?" "What's that?" "Neverheard" "A what disease?" "Ooh, what a cool name!" Yep. My chronic illness does have a cool name, I do agree. It's sad how Meniere's is so little known. My friends were interested in learning about it, but since my disease is pretty well under control and it doesn't have a direct affect on anyone besides myself, they tend to forget about it. They'll ask things like: "What was the name of that condition you have, again?" "You had some ear thing, right?" "Are your ears all better now?" I don't take it personally if someone I know forgets the name of my disease or if someone remembers the name but doesn&

My hearing has deteriorated so slowly that I never even realized it was happening. I knew it was happening, but as far as I'm concerned I hear just as well as I did five years ago. But... I really don't. I mean, I really  don't. Here's a picture of my very first audiogram back in 2012 when I'd never heard of Meniere's disease compared to an audiogram from July of 2016: The truth is, even after the latest audiogram I didn't feel as hard of hearing as I am on paper. My right ear being healthy naturally has a lot to do with why I feel that way, but still. I never noticed how bad my left ear had gotten. Every now and then I would pay attention to it and take advantage of certain aspects of my hearing loss, but I never thought about it any further. You know what I mean? I'm getting a hearing aid for my left ear sometime this spring, which ought to make things a bit easier for me, since I don't do so well in crowds, classrooms, and other noisy e

I addressed this matter on my other blog a while back, but what better place to do that again than on this blog! I think everyone with Meniere's disease can agree that there isn't enough information out there and way little research is being done. So many people have Meniere's disease, and yet nobody talks about it. Why is that? Why isn't Meniere's disease considered important enough to make it more known? Our curse is that this disease is invisible. Maybe if we were all walking around with our heads bandaged up, people would take it more seriously. There is a petition online started by Judy McNamara Tripp to get Bono and U2 help us raise awareness. The petition states the following: We are requesting that you would consider one of two possible options: First, creation of a simple (filmed) statement before you sing your song, “Vertigo” during one of your concerts, mentioning the need for a cure, something along the lines of: “We need to find a cure for the