How optimistic are you about your condition?

Hi sirlanc,
It was nice to see a post like yours. Reminded me of when I used to visit here almost daily a few years ago. You are absolutely right - this community here - this family, will nurture you and give you all the hope you need to get by. I love each and every one of you who makes your contribution here.
Hugs
trixie

 

I did not check any because my feelings are a blend of all of the above. With the management approaches I've taken over the past year, my condition is generally better than it was 18 months ago. However, that can vary from day to day. I always have to assume and prepare myself that the worst could happen but keep as positive an attitude as possible and try to live my life as close to normal as I can on any given day.

I've had periods of remission lasting weeks or months but just about the time I allow myself to fall into the trap of thinking I'll be fine forever, I get kicked in the ass by the Beast. The only thing I can do then is pick myself up, dust myself off, and continue on the road of life.

Realistically, I know that over time, my condition will get worse, but I try to spit in the Beast's eye and tell him that at my age, the grim reaper will get me before he does.

The bottom line is that you have to be realistic and not delude yourself into thinking that a miraculous cure is coming tomorrow. However, you also have to do the best you know how to manage and keep on living to the fullest extent possible for as long as possible. There are a lot of worse things that people contend with everyday. Personally, I'd rather face the MM Beast every morning and joust with him than wake up knowing I'm dying a little more every day from something like pancreatic cancer.

 

Time to get some Newbie fresh inputs on this!

 

I hope they can find a cure but for now almost all of the questions seem appropriate for me. It just seems to depend on how I am feeling.

birdmom3

 

One day at a time. Everyday that I wake up, breath, hug my family, and enjoy Gods creation is a precious gift to me. Who knows what the future holds? I don't dwell on it.

 

I'm optimistic to a point, but scared this thing will morph into something entirely different. Every day I feel relatively "normal" is a blessing, but I also feel like I'm waiting for the other shoe to drop. But as Poppa said, it ain't cancer either. So there you have it. Fight the enemy you know rather than waiting for the enemy you don't know to kill you.

 

I have no idea what box to check or which way this beast is going. I'd love to be optimistic as everyone else here seems to be but truth is, I'm not at all. I've been to six docors and the last one said sorry there is nothing I can do for you, you've got to fight this battle alone, good luck. How optimistic can I be after hearing that?

 

Ten years ago I was optimistic- now I just don't know as I have never been this bad. I would like to think a cure is just around the corner but feel this disease is not getting nearly enough attention so am not hopeful that a cure is in sight. I would celebrate life if only the vertigo was gone. My hearing in the right ear is almost destroyed and I have extremely poor balance plus 24/7 tinnitus, those I can deal with, just want the vertigo gone.

 

I think that Menieres is more a syndrome than a disease.
This would explain the reason for so many variations to this condition
and the inability to find a cause or cure.
But I have no experience in the medical field, with the exception of be a patient and at too many times, a Guinea Pig.
I'm afraid that after having Menieres for twelve years and riding this better-worse-better -worse rollercoaster with a slowly deteriating condition and quality of life
I find my optimism of a better future, crumble.
Bad day today? You bet.

Hope is the thing with feathers
That perches in the soul,
And sings the tune--without the words,
And never stops at all,
Emily Dickinson
WITHOUT FEATHERS
Ron

 

Not sure, I don't have a big faith in the medical doctors of this country. As long as they can make a buck that is all they care about. I don't think that too much is being looked into as far as this disease. But I can tell you that a cure is out there along with the cure for cancer, the common cold, etc.....but too many people make too much money to let them come out. Call me wrong if you want but if we can do bypass surgeries, organ transplants, etc.....but we can't cure the common cold ???? C'mon...........

 

I'm not optimistic about being "cured" per se. But I care less about being cured than I care about being functional. Luckily for me, I only experienced terrible vertigo 18 years ago when I developed Meniere's in my left ear. Oddly, after receiving a palpable diagnosis, I never really got a bad case of vertigo again. I attribute it to the fact that once I knew what was going on physically, my body did not have the associated physiologic reactions that go with being freaked out about the dizziness (anxiety, cold sweats, palpitations, etc). I would feel myself get dizzy, then mentally acknowledge that it was just a little fluid acting funny, and it had the effect of helping me balance and focus within a minute or two.

Now 18 years later, I have developed Meniere's in the right ear. Thankfully, the vertigo never returned and so I am not debilitated. However, my hearing function has been under attack every few months when I have flare-ups and I have been constantly on guard for changes in my hearing. I have been successful in the battle so far with steroids and a set of steroid injections -- though I had a residual pinhole in my eardrum that got patched yesterday. Because of my career, I absolutely NEED to have functional hearing or I cannot continue in this profession. At this stage, my goals is to keep my hearing functional for as long as possible (so far, so good), and hopefully down the line technology will advance such that new hearing aids and/or other assistive devices will provide sufficient accomodation to keep me functional should the worst occur.

Until then, I really don't ever get down because it is what it is. The disease is neither good nor bad, it just is. And it's my particular burden (along with many of you). I could have it much, much worse.

 

I pray for each and every one of the newbies here and everywhere that science will indeed find a cure for this horrible disease, before you are where I am at, at this stage.

Huh, Disease and Dizzies sound the same.

Life with out hope is a hopeless life.

There is little or no possibility that I or many of the other old dogs here, will get any real relief from the damage that has already been done.

We,, must adapt.

 

how do you adapt ? how do you live a normal life and do things that you would normally do and then have an attack hit ? I have enough trouble getting through the day now because I am so damn paranoid. I know that makes it worse but it is what it is.......I refuse to be stuck inside on the couch but I also don't want to be in the middle of something somewhere and have it hit hard. Granted, I am at the beginning stages of getting treatment and have not found what works for me yet...........

 

How do you adapt? Good question?

I do not live a normal life. I do not do the things I used to do. Everything is now a "new normal" as my friend Pardoneme would say. I did not say that adaptation is fun or preferred.

Hearing Aids, lip reading.

Walking with a cane.

Do not endanger others by driving.

Jogging on a treadmill instead of jogging on the road.

Wearing dark sun glasses everywhere.

Ear plugs in my pocket at all times just in case.

You have many options today Kerry, many more than what was available to me 35 years ago.

Good luck

 

When the latest attacks flared up I too refused to be stuck inside on the couch. I continued working until it became impossible. When attacks started coming daily, as often as 4 per day, I gave in. Since Christmas I have been out of the house 4 times - twice for haircuts and twice for doctor's appointments. Not much of a life.

 

any relief would be appreciated - I would be thrilled if vertigo and constant dizziness left and I expect that to happen one day

so I am optimistic

 

I do not have it too bad at this point. Hearing loss in left ear, tinnitus 24/7, and some periodic vertigo (nothing like the severe, debilitating kind I have read so much about here - my heart goes out to all who fight that particular nightmare.) Before I found this board, I would have checked "condition will deteriorate" as it seems I may be going bilateral now.

After doing the reading here for a few weeks I checked "condition will improve but never to full relief". I doubt hearing can be recovered 100% after so many years but would love to be proven wrong! I'm curious - June - why do you think the medical community will have a full understanding of MM in 5 years? There seem to be only a VERY small handful of doctors who are interested in treating/taking this condition seriously and the general population is unaware of it's existence.

 

If you do not live a normal life and be able to do the things that you love, what is the point ? I am into old cars big time and love car shows, swap meets and generally anything to do with them. If it gets to the point that I can no longer do those things, or gets in the way with my life with my wife and family, what is the point ? Sitting around in bed all day spinning is not the way to live. I FULLY believe they can cure this as well as other diseases but money is the issue. To many high priced doctors would lose too much money. You tell me, all the medical things we can do, and we can put a man on the moon that they can't cure this if they want??? I don't believe it for a second. Like I said in another post, if Tiger Woods or Michael Jordan or some other filthy rich athlete or person had it, you tell me they would not get better care than the rest of us ? There are people who can fix this..........

 

From 19 to 21 years of age I could party all night long and take a shower and go straight into work in the morning. I Could not do that anymore by the time I was 22. Things that I loved doing at 22 I could no longer do anymore at 25 when I had a baby. I became a single parent at 30 and had to give up many, many of my passion's, including old cars.

At 40 there is no way I could do the things I did when I was 30. At 50ish I can only dream about the things I could do when I was 40.

I am sure that (hopefully) at 60 I will be shocked at how spry I was at 50.

I have had to give up and sacrifice so many thing in my life that I loved, that I have lost count. Some do to Menieres, some do to family and financial obligations, and mostly do to getting older.

Whats the point, you ask? Life is a freaking blast and a one hell of a ride. You create new loves and passions. You evolve and accept the new normal, you adapt.

 

exactly dog

if someone would have told me that at the age of 45 I would live on a farm and have a lamb in my house (at times) and cattle in my backyard I would have called them insane...or if someone told me you will be happy at the age of 45 but will have suffered and still suffer daily from vertigo, loss of balance, vision problems, and somedays unable to walk - I'd called them nuts...if someone foretold that I would lose all my worldy possessions and unable to hear some days and walk I'd propably committed myself to the nut house