How optimistic are you about your condition?

I've been told by my dr. that eventually I will lose ALL of my hearing . . . well, what's left of it. BTW I'm not a newbie--just got lost in a couple of shuffles ("spring cleanings"). Actually, been on this site since about 2001, then there was nearly a whole different crew posting here.

 

I'm the same as fixxitgal. I don't see why I have to lie about how I feel or make up stories about what I did over the weekend just to make others feel more comfortable. If a friend asks how I'm doing I assume they want to know the real answer, otherwise they wouldn't have asked. I get out when I can, but apparently it's not enough for my friends. They've all stopped emailing me back this week. I don't know what to say though. It makes me mad that in order to have friends I have to pretend my illness doesn't exists just so everyone else will be happy. What about me being happy? No one cares about trying to cheer me up or let me talk when I need to, they're just worried about themselves.

It's been a rough week.

 

I'm right there with you - been a rough week for me too i tell people how i'm feeling too because i am not going to lie. I constantly complain to my BF and apologize and he says it's okay he wants to know how i'm feeling. not many people like that i feel blessed.

It was great so see a few people at work but of course i get the "you look great" sometimes i wished i looked as bad as i felt and they might understand then

hope you feel better!!

chris

 

I voted it will improve but will never be back to normal. Why? BC before I was Bi-lateral I had Dex shots in my ear my hearing is back no problems w/the ear at all. had ESD w/out the shunt in right ear only get loop(er) when it rains, and can now even go to work when it rains, when before I'd stay at home and work. It's not right, either its not healed or this is it. I'll take running into the walls now and then.fluctuating hearing when the barometric pressure changes. No drop attacks, very very few dizzy spells. and well Faith. and no i'm not trying to turn this into a religious thread. Do I feel sorry for myself um sometimes, but I want to go through this to find a cure in my life time so my grandchildren and daughters hopefully will not have to. I believe my MM has been passed down through the family and will go through anything ANYTHING so they won't have to. HAPPY DAYS!!!!

 

A year ago, I was a really depressed person. I'm 20 years old and deal with shit that people triple my age deal with. I diserve to go out and live a normal 20 year old life. I feel like my symtoms are 90% controlled most days. Knock on wood as of last November I haven't had to cancel anything. I can eat whatever I please, I don't have to feel like a disabled person anymore. This KILLED me to feel so abnormal; people do not know what that feels like at 20 years old. Most conditions people are born with by that time not; something is wrong in your brain that you've only had for 4 years. Anyways, just my two cents. I never take advantage of being healthy.

 

Has anyone changed his vote in the past months?

 

My condition will deteriorate over time. I went too long with severe attacks and a great deal of permanent damage has been done to my vestibular system and hearing. However, I am 71 having had this disease for 61 years and still manage to have a quality lifestyle - not like the old days - but still some quality. Keep your chin up guys!!!

 

right now I feel like it will deteriorate...maybe tmrw I will think different

 

I read something just this morning in one of your posts, Sirlanc, something about how you and MM need to learn to get along. I think I am slowly coming around to that realisation, too. 4 years ago I wanted to punch my doctor when he told me simply to "learn to live with it." If I don't embrace this, and even look at it as a challenge, it will beat me. I can't afford that-I have too many people depending on me.

My answer stands-may have it forever, but will feel better

 

Nope, the shunt surgery has given me my life back.

 

My last gent helped alot. We'll see how long that lasts. I have to think that my vestibular system is wiped out on the bad side. That's 7 or 8 high dose gent shots in that ear. That's alot of gent.

 

Honestly, I hate to say this because I'm quite an upbeat "glass is half-full type of person", I think my condition will continue to deteriorate.

Even with the hearing aid that I just got in August (that was a big change), I still struggle with understanding conversations. It's frustrating for sure. There are days when I'm gripping my head in my hands to keep it from spinning off my neck.

However, it's important to note that having said that, I don't live with my head hung low. I have some very good, very happy days that I don't even think about this wretched disease. On the days that I wake up and I just know that it's going to be a good day, then that's my last thought of Meniere's for the day. And I truly enjoy the day, whether I'm working, paying bills, cleaning the house, yelling at my son for not cleaning his room ... lol. ;D Because those days are no longer just "average joe" days. When I'm feeling good - not a Meniere's day - for me it's an exceptional day!

Knowing that this disease is progressive is something that I just don't dwell on or think about a lot, because those thoughts really would take me down a dark road. And we never know what the future holds. I had a lovely 3 month remission in the summer, so even though I do believe the condition will deteriorate - at some point - I always hold onto hope - and my faith.

 

Some days I wonder how it could possibly become worse and then I get a subtle reminder that I may be becoming bilateral and then I know it can be much worse.

 

for the new guys on the forum

 

i think over the long term, our condition will deteriorate, how long that takes is anybody's guess. a bad condition does not mean life is over, it simply means life will be different. Then again, different is sometimes good. After a while that different will become normal, you will adapt and life will go on.

Stephen Hawking is basically paralyzed from the top of his head to tip of his toes and he did not let it stop him from achieving his goals. Sometimes our goals just need to be achieved differently or from a perspective we never envisioned, such a as with a Cochlear Implant, Wheelchair, cane, ect........

life will always reward the brave and risk takers, something to always remember. this applies to our health, our career, our personal lives and every other facet of life.

i was always told, you can tell how suscessful someone is by the amount of risk they are willing to take in their lives.

 

who is stephen hawking?

 

I feel pretty optimistic right now. I think that is because I feel like I have taken control by educating myself and actively seeking options to manage my symptoms. If you sit and suffer, and wallow in your suffering, you will only get worse/feel hopeless.

 

He is a Japanese cartoon character from a TV series whose episodes are comedies with lessons regarding values such as integrity, perseverance, courage, family and respect for elders

 

He is the guy who gave u tickets to the dolphins game.