I am curious - how do most of you cope with friends and family with this disease ? I live alone (with my dog) and I feel it's actually better being alone. I am always in a bad mood,short tempered and have to bluetooth phone, tv, etc. to hear so it's only myself to annoy. Too many of my friends say "oh yeah, I have ringing in my ear too" but have no idea what I am going through, and I got tired of explaining my symptoms along time ago. I'm sure there are some out there who have lost spouses or significant others over this crap. If I am in a crowd I usually go off in a corner and sit alone, and then I see other people staring , wondering . I even have the occasional total meltdown when I cover my ears and just scream like I am being killed. Then I apologize to my dog.
Yellowboy, I've found after 32 years that I live two very distinct lives: one life with symptoms and one with limited symptoms (i.e. tinnitus never goes away). So, I live for the limited symptom days. If I'm dizzy and nauseous, like I was all of January and February, I prefer being alone. If I cannot make important events, the people whom I care about and care about me know why. My wife simply says he's with Menieres. But if my balance is in check, as it's been for the past 5 weeks, me and my ringing ear enjoy every minute of it. For me, most of life is the simple stuff - taking a walk, reading a book, strumming an instrument, playing an occasional round of golf, being with family/friends. Helping others when I can. I'm not sure if I'm unusual, but if I'm feeling off and I happen to be with people, I will tell them exactly why I'm off. Most people are sympathetic or at least curious. Others are just busy thinking of their own lives and don't really pay much mind. Everyone has problems, right? Either way, I'm ok with their response. No one, except those of us with this wretched condition, will ever truly understand it. It may simply come down to the age old question of "What's it all about, Alfie?" What is the purpose of any of us being here. Of course, like most people, I don't know the answer to that. I suspect it has to do with being of service to our fellow humans. So, for me, I live for these better days and try to help others if and while I can. I'm wishing many good days for you ahead.
What an awesome post! There you have it. Lately I cannot walk with confidence because I lose my balance constantly. I use a walking stick and walk about for awhile, greeting people, smiling at strangers, wishing friends well, and getting a giving hugs to dearest friends. That is the best service I can give these days. These things always help me to feel better despite the constant tinnitus, nausea, and disequilibrium. So, hugs to you all and I hope you experience some kindness today.
Hey yellow boy, First off, thanks for your post. It has been the best thing I have read in awhile. My short answer is I prefer to be with my wife or alone forget about the awkwardness of socialising. Only my wife cares anyways. My family and her family don’t care and are not interested in the silent struggle so I don’t see any of them anymore. This post was from another board. I like to read it from time to time and odd as it may seem I find it encouraging that I am not alone in my feelings. Enjoy my friend and keep fighting the good fight. My Meniere’s has been with me now for a decade and a half. There are good days, bad days, followed by bad days reloaded. The tinnitus varies in sounds and severity, but is always there. The dizziness never ceases to annoy with surprise appearances. I have given up on appointments with specialists. No more steroids in my ear. No Experimenting with chemical inner-ear surgery via gentamicin injections. My good fortune is my understanding and supportive spouse. Way down from 160/162 pounds, I’m now 139/140, having given up many foods my changed biology no longer tolerate. Given that I look comparatively “normal”, with few outward telltales of an ailing person, enough people volunteer their own diagnosis of this condition, that it isn’t an illness, more a need to “see someone” and get my head “cleared up of negative auto-suggestions”. Withdrawing, therefore, to be by just ourselves, is a great way of managing. I choose not having to deal with having to ever trying to manage myself around people, friends, acquaintances, who do not want to accept that I cannot be as hospitable and entertaining and up for whatever they have in mind. When I’m fine, my solitude is superb. On days when the the world turns into a different place I’d rather not encounter, solitude also works best. Given what abnormal days bring, I consider good days as rewards, good fortune well-deserved, and more so than back when nothing ever went wrong. Now I no longer wonder ‘why me?” I just ponder all I like to and plan to do on a good day. I wish multiples of good days to all for whom this is the fated path through life. Stay positive.
You aren't alone AB..I am very much the same. I have a nice office I built in my garage, and I've set it up as my own space, including satellite TV, high speed Internet, an indoor garden, etc. I smoke, and don't smoke in the house, so out here I can be comfortable. I probably spend 12-14 hrs. a day here; it's peaceful. It's not that I dislike people; it's more a matter of keeping my life simple and stress free.
My wife knows what to do and how to help. Fortunately the vertigo is burned out so she no longer has to get the vomit kit ready. When I disappear from parties and gatherings, my friends know why and they kindly support me.