Hi there Its been quite a long time since i last visited this forum . I have had MM for more than 15 years and my hearing gradually decreased so that now i hear nothing withou HA and by hearing aids depends on the place when conversation takes place . I have gone through many days or years with symptoms of every kind and i have visited 35 specialists and followed their orders ( sorry nonsenses ) and now have stopped all medications ( since they do not know what this disease is ) and God knows how many days or years is left for complete silence . BUT FRIENDS < the most hurting part is that people around me and even the loved ones do not understand what hell i am going through. And i always try to make jokes while those are truth . Well well i do not know what for i wrote these lines , maybe i was psychologically depressed and hopeless. Well thanks for reading these lines though i know nobody even GOD can help me or maybe he is punishing me . Regards Ray and sorry for my english as i am not native speaker . Thx
Welcome back, but sorry it is.necessary. It is painful when people closest to us don't understand our pain no matter what it is. I can relate. You should make what you are going through clear to those in your life. You cannot control how they react. Take care, one day at a time. Take care of you. The people on this forum can relate.
Hey Ray, There is no way anybody not walking in your shoes can know what's going on in your head. Many of us on this forum and there are many other MM disease forums and there are many people that are not on any forums that are suffering as you are. It sucks. Getting old and getting diseases and other illnesses is not for sissy's. Be strong. No Matter how bad it gets. Be strong! I sing in many nursing homes and memory care facilities and I see a lot of people that are worse off then me and probably you and most of us on this forum. And, some of them, not all, have found peace within themselves no matter how bad off they are. So, I try everyday to look on the sunny side, the glass half full side. And, I think about all the friends I know that are deaf and they have peace and still enjoy life. After all that said, Having Meneires SUCKS!!!!
Hi Ray, Hope things get better for you. Do you need people to believe you have this disease? Would it make a difference? If you do want that validation then perhaps stop using humor around them. It sends mixed messages to some folks. I know you may be trying to protect them from your reality but it's getting you a reaction you don't like. If they can't handle the truth of your reality then it is their problem. But, if you need these loved ones to assist you in times of an MM crisis, then sit them down and discuss it like you would to make any kind of safety plan. They won't take you seriously until you get serious with them about your health. It's very easy to become depressed and feel hopeless when almost every day is a bad day and when your hearing is so poor. Don't beat yourself up for that. I trust that you will figure a way out and give yourself some good reasons to wake up with a smile as often as possible. Stay strong! Be kind to yourself and forget about wanting someone without MM to understand this disease.
I want to wish you the best Ray50, fortunately i have very supportive parents who go to all my doctor visits with me as well as an understanding boyfriend. I have had a few off days but since my shunt surgery i have not had vertigo, knock on wood.
All i can say is the people here believe you because they know. I dont think people who have not experienced this can understand.
I don't think that my friends or family can truly understand what I go through - but I will say that I am fortunate in that they each seem to grasp that it is not a good situation and that I make the best of it as possible. Obviously if they have the misfortune of actually seeing me in an attack it becomes a bit more clear. I will never forget one day a friend of mine agreed to pick me up/drive to a movie because I had said I didn't want to go as it wasn't a good ear day. Not too long after she mentioned that she was at a dinner party with a friend of hers that is an ENT/OTO at a major hospital and she had told him about me and Meniere's. I think she was hoping that he would have some pears of wisdom.....he said basically "that sucks". He said that his Meniere's patients are the most frustrating for him because there is not a lot that he can do short of surgery. I think that brought the situation into a clearer focus and sensitivity.