Hi! Ok I dont understand..well I do understand that MM is difficult for hearing people to understand but there needs to be more awareness about it. There are so many people on this forum and not on this forum, that have MM or conditions like it, that if more and more people knew about it that maybe there would be alot more people who are more understanding and hopefully compassionate! It hurts me when I read how so many people are getting shunned by their own peers and family! That really burns me up. We all have alot to be grateful for, especially the fact that MM isnt fatal. But GEEZ!! There are so many things that we have to deal with when it comes to MM let alone deafness. People need to be more aware of this..the more people are aware the less people will be turned away. I wish there was a way to get Menieres and other conditions like it for awareness,either by television or something so people understand more when it comes to things that they dont understand. MM isnt something that people can see on you..we shouldnt have to wear a sign or something. People should just be more compassionate to other people no matter what. It just hurts me so much that people can be so cruel! Sorry for venting like this but I am hoping soon that people in this world will become a lot better towards everyone. Thank goodness we have each other here to band together for support. We shouldnt be defined by this disease.With so many talk shows on the air you would think this could be a topic of conversation! Anyways, thanks for listening. Take care! (((hugs and smiles)))
Hi Beth - HeadNoise (Sherry) is doing a lot right now with awareness in mind. Feel free to jump in and help. Check out some of her posts. Hang in there my deaf buddy!
Hey, I'm working on it, but I need everybodies help too!!!! We don't have a celebrity spokesperson. If WE don't do it, nobody is going to. Watch for upcoming opportunities. I've got a head full of noise and a lot of ideas. We can do this!
Hi Linda, hi Sherry! Please let me know what I can do to help. Linda...how did you know it was me? Made me smile though! (((hugs)))
I finally got the people at work to understand today.... They thought I was just ignoring them when they talked to me. Today someone said "How's it going deary" and I looked at them and said "why did you say that was stupidity?" Then I explained to them that this ringing over runs everything in my head and that I have lost 23% of my hearing in that ear. I gave them the link to one of the pages that talks about MM and they finally understood and explained it to the other's at work. Finally, they will stop getting mad at me. We just have to educate them one by one if that's what it takes. I'm willing to help
That is true at work they call me dizzy Lizzie I wear my hearing aid and masker but sometimes it bothers my ear so I don't wear it then I hear like I am under water. Itoo told them to look it up my boss did and he came over to me and said how do you do it? it is a fight every day just to get out of bed! My friend Linda was like just don't thiink about when you ear rings 24/7 and you feel like you are going to fall over it is hard to ignore.Well people need to know we are not making it up and we are not crazy this is for real and I pray every day for a cure!
I try to do what I can, to get people aware of MM but unless they have a family member or personally know someone with this disease.. it falls on deaf ears sadly. ;O)(yes pun inteneded) Even with family, you get that look... you know that look that they are listening to you but not believing you. Makes it one feel badly because we can't do what other people think we should be able too. My parents, sister and family in laws are like that. Even after giving them a couple of good links to read up on MM. Luckily though.. my DH and DS understand and do what they can to help, which is a blessing.
I finally got the people at work to understand today.... now that is something i wish i could do!!!!! I've have even tried getting my sister, who is very understanding, into speak to the people at work but no, nothing! They just think i'm a moody girl that has probably been out on the drink the night before and i am sick of it! It winds me up something terrible and obviously that doesn;t help either. Does anyone have any suggestions as to how i can make my friends & colleagues understand. I am NOT looking for sympathy just some understanding that i am who i am and they need to accept it - god knows i have had to come to terms with it as with everyone on here!
I try to explain Menieres the best I can but sadley I usually end up saying "it's an inner ear thing" to which I get the "oohhh" like they can understand that. I have printed off the pamphlets off Menieres Resouces and give those to people who ask more and you can tell really want to learn about it. I still get the "surely they can do something to fix it" wayyyyy to much. That frustrates me. I find it has been a process for those close to me to come around to the reality of it, just as it took me time. I am there to talk about it when they ask about the changes they see in me, some get it some don't.....
It is frustrating trying to make people understand. When I mention vertigo, I usually get back ooh no ladders or high buildings for you then! Then I have to explain that I'm fine with heights, it's a different type of vertigo! Then when you mention the inner ear thing, they usually say oh yes I suffer with my ears when I fly I know exactly what you mean. Noooh, that's the middle ear and you don't know exactly what I mean! Then the tinnitus and they say yes I get that sometimes. That usually means the short 2-3 seconds bursts that sometimes sound literally like a ringing then stop, not the 24x7 multi toned symphonies we have going on I've now started saying I have a problem with my right ear that causes vertigo on occasion. To have some idea how I feel imagine you have been out to the pub and had several pints or shots. Now imagine you have been to the fairground and ridden the Waltzer or the fastest, spinniest ride you can find. Now how do you think you would you feel when you got off?? Pukey, spinny, buzzing head?? Well hold that feeling and imagine that (in my case) for 4-12 hours at a time with the buzzing 24x7. That certainly makes them think!
oh I so understand. I am my own advocate, I have written to 2 newspapers at times of this disease and will continue this. It is great you want to help, contact HeadNoise! We all can be our own "Advocates" and bring this beastly disease to the forefront!! Ruth - NH
I have written to a couple of celebrities so far about helping to bring meniere's into the open, I won't know what happens yet as I only sent the letters a few days ago with alot printouts from the net about it. All I can hope for is they will make a stand for us all.
I hope that awareness will blow out in the open. Try sending mails to Fox news too... I know I did...
been trying to get any news paper here in Australia to take a story on it considering there are about 21,000 of us here suffering for, but it's still falling on deaf ears they only want to hear the success stories. I have another plan I'm doing, and I hope it works, I have my family who are so eager to help with it too, my familly are videoing my attacks during and after, I am aiming as well to put these together and try and address parliament with it as well.
