Just attended a gathering with family I haven't seen in many years. Was curious how others explain to people so they get some understanding of what we endure daily (if even possible) .
I told them to think back to when they were so drunk that the room was spinning when they laid down. Now imagine that for 10 hours, and you're sober and can't pass out.
Perfect scott tom, perfect description. I always would say it is like the after affects of being on a drinking binge without any of the fun and beverages!
that's bout the way I do it scott tom - drunk sans alcohol. And unfortunately onedayatatime is right with the "me,me,me" world of today.
It depends...I have found in social settings even people I have known for years don't ask or get it. They ask how I've been and when I say I've been ill they have said "oh I've been sick too" meaning they had a minor illness. I find my definition of vertigo doesn't match either. For some people, vertigo is mild dizziness, not 4-6 hours of room spinning and vomiting. I had a trip recently with a relative who never once asked about my health issue. I limit my conversation about it now. I am doing better though and not dealing with active vertigo. I find people who saw that are genuinely interested in how I'm doing but other than that most folks don't really get it.
I get a lot of people asking if I'm "better" and assuming that it will just go away in a few days. They don't understand that it is an ongoing, battle and every day is facing the unknown!
Most people look at me and assume I don't have any major health issue (no missing limbs, deformities or excess weight). Some of my friends and family do understand better now that I cancel many of our meetings and have to ask them to repeat what they said, or can't drive far from home by myself. I keep some up to date on the specialists I've seen and medications in order to better explain. Yet, even my DW who knows better than anyone, gets frustrated and annoyed as I struggle to go for a walk or constantly ask her to repeat what she's said.
I'm saying very little now and quickly change the subject. If I have to cancel something I find "I'm not feeling well" is enough explanation. and I completely understand about spouses getting stressed about living with us. Mostly though, I have to say my husband has been wonderful
Well, drunk sans alcohol explains the vertigo but what's going on in your ear is a different story. Hearing loss, tinnitus, hyperacusis, and distortion ("What do you mean you can hear me but can't understand me?") can be difficult to explain.
I generally don't unless asked. If I do, I just say I have some issues with my inner ear, vertigo and the like. I explain that it's a complicated disease and that I could give them a 20 minute lesson on the workings of the inner ear. Most decline.
For my major attacks I tell them it's like being on the Tilt-A-Whirl at the amusement park and the slacker operator wanders off to get high and security doesn't find you till the morning. Still spinning.
I just tll most people i am partly deaf and they will have to stand over here for me to hear them. Most people dont want to know any details. Often they are carrying their own burden. The ones who want to know will give you some quiet time to tell them.
I give people a big break on how they respond to my MM. It's very hard for people to know what to say to ill people in general. It can be socially awkward. There's a fear of asking too little. There's a fear of asking too much. One thing that does bother me just a bit though, is when people who don't have MM, give me a bit of the rah-rah talk. Like, "you gotta be strong", or "tough your way through it." Especially when it involves me traveling. Sorry but you don't "tough" your way through traffic. Putting live's at risk. And it's hard to tough your way through dizziness. It's like the body wants you to lie down. And there's that irritable/uneasy feeling. There is great fatigue also. You CAN tough through the "mild" dizziness. Like most of us do every day. But I just don't need someone who's got no idea about it, to give me the "be tough" talk. That was a ramble. To answer the question. If I'm having to explain why I'm cancelling an appointment at the "last minute", I say "I'm dizzy. I have dizzy spells." I get kinda specific like that because if you just say "I don't feel well" it sounds like you're just blowing them off. If someone asks me to explain, I say "It's called Meniere's. Pressure builds in your ear making you dizzy, and sometimes making you spin." If they want more info, I can go further into it. Just depends on their questions.
Most of those giving the "be tough" talk have never had to be tough. I don't try to explain anything except to those I interact with daily, like my immediate family or direct co-workers, managers. At work, they are more afraid of me pulling the plug to retire than they are of dealing with my needs. I don't make excuses, I just say I'm outta here and leave. Unfortunately, we do need to hang in there and getting tough does not last for long when the room is spinning or when the roar in your head overrides all other sounds. This isn't Disney World, I can't step off the ride when I'm tired.
If you're flirting with a girl and the issue comes up, you could do what Robert De Niro did in Cape Fear and say you got MM through some heroic act. Like you were at a Womens' Rights march and some hot-head cop was harassing a lady marcher. You tried to pry his arm from around her neck and another officer whacked you on the head with his Billy club. But lying is weird. Don't do it.
The day I got diagnosed my wife found a similar description on the internet- " Imagine you got on a Tilt-A-Whirl drunk and couldn't get off" . I still use that to describe the episodes. Another thing I do to explain a compromised balance system is say "Try standing on one leg for 30-60 seconds. Feel all of the muscles correcting & overcorrecting? That's why I feel so tired."