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Why Meniere's Disease Made My Life Better

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 got one, and now that I have it, it's not nearly as bad as it could have been. I was worried it would make people treat me differently, but it's so invisible... modern technology amiright. I keep forgetting it's in my ear. ANYWAY, back to my main point. It's not all bad. Living with hearing loss has introduced me to whole new things in life, and I dare say my life is better now than it was a few years ago.

I'm nearing my thirties, but still feel like a kid most of the time. I'm sort of rootless, traveling a lot and wanting to live abroad. I haven't settled down. I've had a hard time defining my identity. What am I, who am I, blahblahblah. Some years back I probably would have defined myself as restless, in search of something, ear sick, I have no idea what I'm doing with my life -kind of girl. I have, however, matured a lot. I was due... I have also gotten to know myself better. I now describe myself, proudly, with the following: determined, writer, aware of my worth, and hard of hearing. Meniere's disease has helped me figure out who I am. I'm not saying it's all clear, and that I wouldn't have figured things out without Meniere's disease, I sure hope I would have. This is what my life has been for the last five years, ever since I got sick.

You may also know that I've taken on sign language as well. I'm learning both Finnish and American sign languages, and I'm loving it. I'm familiarising myself with the deaf community and culture, and hope to be working in this field in the future. I was also chosen as a stand-in member of our local sign language choir board. Due to school and work I don't have time to actually be in the choir right now, but later this year I just might :) Being hard of hearing has opened new doors for me, and I wouldn't have it any other way. I'm comfortable being hard of hearing. I'm also happy to be talking about Meniere's disease, because there really isn't enough research out there.

I can't be sad about having Meniere's disease, when it has brought along so many good things that completely outweigh the bad.


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What I Want You to Know About Me and My Life with Meniere's Disease

If you know someone with Meniere's disease, you should read this. If you know me, and are a part of my life, then you should definitely read this.

1. It's completely fine to ask me about anything related to my condition! I would rather have you ask than make assumptions. MD is not a sensitive subject to me, and I'm happy to fill in the gaps!

2. My condition is permanent. My hearing loss is permanent. Please don't ask me a year from now if my ear is all better - it won't be. There's no cure for MD, and this is something I'm stuck with until there is one.

3. If/when I say I can't hear you, I mean it. Please accommodate to that, and speak up, or write or type what you need to say to me. Or, if you know Finnish or American sign language, you can sign to me ;)

4. When I have vertigo, please know that it's quite debilitating. If I ask you to drive, it literally means my world is spinning out of control and you do not want me operating heavy machinery. My…

Meniere's Disease Symptoms

Meniere's disease is different with everyone, that much we all know. However, there are a variety of symptoms that everyone with MD experiences at least sometimes. Below I have listed common symptoms that occur before, during and after attacks / between attacks, and I have underlined everything that I am experiencing during those stages on a regular basis. All of the information I have gathered in this post, can be found from Vestibular Disorders Association's (VEDA) website, which is an excellent source of information. This post is not sponsored.

balance disturbancedizziness, lightheadednessheadache, increased ear pressurehearing loss or tinnitus increasesound sensitivityvague feeling of uneasiness DURING AN ATTACK: spontaneous, violent vertigofluctuating hearing lossear fullness (aural fullness) and/or tinnitusanxiety, feardiarrheablurry vision or eye jerkingnausea and vomitingcold sweat, palpitations or rapid pulsetrembling AFTER AN ATTACK / BETWEEN ATTACKS: …

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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 :)

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