What have you continued to enjoy even with Menieres?

Art. Walks. Garden. My husband, kids and friends - maybe treasure the well times with them even more. Appreciate the days I'm able to do housework etc to care for self and family where I used to hate and resent those chores.

 

Pretty much everything I used to enjoy, only a bit slower and with significant gaps of time spent between events in horizontal status, waiting for the world to stop spinning.

I still work, and although I have only been 50% billable for over a year, I work from home now
I still play steel guitar and guitar on gigs, but I'v done only 10 so far this year
I still work in my garden
I still ski, and I stay as physically active as I can during the good weeks
I still like to cook for friends and family and entertain
I still like to hear to other musicians play

One thing I've noticed is that I don't read as much as I used to, and it takes me much longer to figure stuff out - new songs, technical problems, etc. It is much harder to concentrate with one ear ringing off the hook constantly.

 

Walk, ride a bike.

 

I forgot fishing!! but i'm not allowed to go out alone

 

I've started to enjoy almost everything I did before I was diagnosed with bilateral Meniers. I work full time, avid photographer, ATV. I'm planning on going to go to the local amusement park when I feel pretty good and I'm going to ride roller coasters. I'm going to strap on a go pro and record the whole day. I refuse to let this crap beat me.

 

I thought about not posting this, but what the hey. We're all realistic here. Sorry for the negative post, but if anyone understands, you guys do.

I still love going to the beach, swimming, bicycling, playing jazz drums (which I can't do anymore for a living, thanks to bilateral Meniere's), making love to my wife, doing yard work, drinking beer, traveling, and much more. I love all the things in life that make us happy.

I still do a lot of these things, but I'm so frigging dizzy, there's no enjoyment.
Meniere's has sucked all of the enjoyment out of my life. It's a huge effort to try and do anything fun, and it usually ends up badly.

I like my Kindle, so I can read good books while I'm horizontal! And movies on Netflix, also a horizontal activity.

After trying every Meniere's treatment known to man and having no success, I'm hoping that my new treatment will get rid of this evil disease. Virtually all of the people on this treatment are reporting significant improvement. It takes time, but it appears to be working. I've had 10-15 percent improvement after one month, and my energy is a bit better. Unfortunately, I'm not permitted to discuss it anymore on this forum, but you all know what it is.

Bless all,
Ron

 

Before my laby I wanted to die, I have been at the beach for the last 3 weeks and every morning I take a bike ride with my boys, then swim, surf and windsurf all day while they learn to boogie board and body surf and at night night I go surf fishing.

When vacation is over I will go to the lake every weekend to swim, water ski and jet ski.

 

I've been pondering this notion for a week, having spent 3 of the last 7 days dizzy and unable to do much of anything but wait to feel better.

I do not enjoy this part of where my life's journey has taken me, and I often wonder if I will ever see any lasting relief. I felt great last year until about September, even with the intermittent episodes. Now I feel like <expletive deleted> more often than not.

But on the other 4 days, today included, I took a determined effort to appreciate the details of the things I can still do.

One of my life-long friends, a hero and and steel guitar mentor to me is now at home waiting to die, after a long battle with lukemia... They can do nothing more for him, and he is confined to bed. This man is well known and loved by many in the business, and has helped so many of us get started. I called him the other day to see how he was doing, and what was the first thing he wanted to know? Did I need anything that he could he help me with in any way?

I think enjoyment is a natural consequence of feeling good, doing something you love, and being good at it - but I also think enjoyment can be attained by seeing things differently.

Wishing you all the very best...

 

Great post!

 

I have some limitations now that I didn't have prior to MM (as I know many of you do as well) but for the most part I still enjoy a lot of the things I did before being diagnosed 16 years ago. I just sort of take each day as it comes. On really bad days, I listen to my body and take care of myself. If I'm having a good day though I might work outside in the yard and throw some dirt around, plant flowers, do a little weeding, soak up the sun and LOVE every minute of it. Yardening is SO good for the soul. I have friends and family in different parts of the country and I've taken several road trips alone to go visit them. I play the guitar, visit with my family, take long walks, read a little when I can, I run my own company and basically just appreciate every single day that I'm still on this fine planet of ours.

I lost my older brother to a massive heart attack in November of last year. He was only 52 years old (same age that I am now) and believe me, that was a HUGE wake up call to me to enjoy life as much as I can, treasure my friends and family and never take for granted that I'll always have tomorrow ahead of me.

So whenever possible, do the things you love and make the most of every minute of every day my friends.

Wishing you all a spin-free and wonderful day!
Lulu

 

Everything. I stop when I need to. I sleep when I need to. I take it easy when I need to. But, I have not given up anything. On the contrary, I find myself doing so much more than I did when I was 100% healthy and, paradoxically, that has made me healthier in so many ways.

Don't quit on yourself; you're all you've got

 

You make some very good points Philosopher however I also believe that a little encouragement can go a very long way. I've had this blasted disease for 16 years and other people offering encouragement to me has been the main thing that has kept me going all these years. I DO suffer from vertigo attacks that have left me pretty much incapacitated for days so I know how difficult it is to try and get as much enjoyment out of life as possible when all you want to do is die while you're in the midst of an attack and sleep for days once it's over. But I also know that even in the face of all the havoc this disease can bring to our lives there's still so much to be enjoyed. Even if it's something as simple as reading a good book or having a chat with a friend or family member. I don't feel that offering someone encouragement is kicking them when they're down or a slap in the face. On the contrary, I feel it's offering them a glimmer of hope. Being able to read that someone else has faced the same hell they're going through and has survived it with their optimism still intact may just make their awful day a little easier to cope with.

Anyone who has had this disease for even a short period of time pretty much knows what their limitations are. What one person is capable of accomplishing in a day may not be what someone else is capable of doing but there are still plenty of things to enjoy in every single day even if it's just having a warm, comfy bed to go to after an attack or having someone tell you that tomorrow will be better and to not give up hope.

 

The intention behind people's replies here is to encourage others who are going through a rough spot. This is a condition that is cyclical. Some periods are great, others are less great and yet others are pretty bad.

Even so, we need to stay on top of it and completely enjoy the good times as well as the less than good times by doing the best and most we can do. For some, that might be sitting on the front porch with a cup of tea and the newspaper. For others it might be training for a marathon. For yet others, it might be taking that special vacation with the family.

This is a spectrum disorder and no two people are in the same spot at all times. Our experiences are unique. What we share, despite a difference in the level of impact with which this disease hits us, is the ability to be resilient, the ability to challenge ourselves, the ability to rise and meet a new day with purpose.

Nobody in this thread has attempted to put anybody else down. It's a very positive thread because the responses range from, "I still quilt'" to "I cherish my family time so much more," to "I find myself doing even more than before." It's a thread filled with hope and a reminder that no matter what, we still possess the ability to get back on our feet and hit back harder if we choose to.

 

My case is nowhere near as severe as what others have experienced and shared on this forum.

It has definitely derailed my life's course though... I cannot do many things at the same levels I could before - this is the most discouraging and depressing aspect. I can live with the downtime, but to struggle to play an instrument that I've played most of my life is truly upsetting. When I start to contemplate this aspect of the disease, it will spiral my mood into a very dark place rather quickly.

My good ear has now started to ring daily. Add the constant stress and anxiety of not knowing when the next episode may hit and pretty soon I don't even want to go out of my house anymore...

But I press on regardless.... no choice really. If I can't do something at any particular moment due to symptoms, I wait for it pass.

I've got a gig tomorrow night in Texas City, in a smoky old honky tonk. All this week, I've been unable to get going - haven't touched my steel at all, except to noodle around a bit Tuesday afternoon. My mm ear is feeling full, the tinnitus is back with a vengeance, and I stepped on the dog's paw yesterday when I lost my balance bumping around in the kitchen...

I am taking encouragement from this thread and other threads as well. Thanks to all for your insights and willingness to share experiences, especially what works for you.

 

Hi Philosopher

Regarding the point you made above you and I are in total agreement. I've had people who may experience the occasional bout of dizziness wonder why it is I can't continue working or going about my day when I have a vertigo attack when they have no problem dealing with it. In my opinion, comparing dizziness to vertigo is like comparing a beat up old clunker of a car to a brand spanking new Ferrari. There is NO comparison. I can usually keep on with my day if I'm just having a little dizziness too.

Unless someone has gone through the hell of having their head stuck in the commode for hours on end and suffered both the physical and emotional toll it takes on a person then they can't possibly know how devastating and lonely it truly can be.

Now with that being said and getting back to the topic at hand I'm going to go out on my deck, enjoy a big bowl of blackberries and watch the sunset.

Have a great evening everyone and imasteeler I hope you'll be feeling a little better tomorrow so you can play your gig and truly enjoy it.

Lulu

 

That is a tough question. A simple answer is that I enjoy ALMOST everything I did before I became bilateral. I've had this thing for 35+yrs. Only one ear has ANY hearing or vestibular function remaining (and that's not much). Ablating that 2nd ear took months/years of vestibular rehab - while I re-learned to walk and (slowly)do the things I enjoyed.

BUT... Today I can hike - many, MANY miles, I can even trail run (short distances and NOT gracefully ). I can mountain bike (downhill only really- so that I have visual input for my balance) and it takes a LOT out of me! But most importantly to me, I can rock climb again. It's harder. And there are things that are more dangerous, or slower for me now - but I can still climb! (Yay!) Breaking back into climbing was a lifesaver for me. It only happened after years (2+yrs!) of vestibular therapy w/ both a vestibular PT and a GREAT personal trainer!)

And - as sad as it might be - I have found things that I used to love - but can no longer do safely. I used to kayak. whitewater. I loved it. But when you lose your ears for vestibular input - you need your eyes and some sort of proprioception. I can kayak - just fine. Until I roll. And while I can still do a combat roll easily (muscle memory) - I have No way to judge WHEN to stop my roll. No way to know WHEN I'm upright, or how much force to use. By the time my eyes have made that judgement - I'm usually back over - upside down again- where it's awfully hard to breathe!

I'm not giving up on it. But the reality is - I guess there are SOME things that you can never truly rehab. Especially after ablations on both ears... But it's up to you. As long as YOU are ok with the risk/reward-and you're not putting anyone else in danger - my choice is usually to keep trying. Keep working on the rehab. Find ways to DO what you love. Even if it's not the same as pre-Meniere's.

And yeah - I'm in a different place than a lot of folks. Post ablation (double ablation) is different than being IN the vertigo He!l. I still get dizzy - but haven't had a true vertigo attack in 4yrs now. There's just no function left. So listen to your body. When you need to rest - Rest. there are many days when I sleep for 12+hrs. And then I get up - hike for 15-25miles... do what you can. Do what you love.

 

Well said and inspiring!

 

I don't know how to answer this question..so haven't until now. But I never did things w/o fear as far back as I can remember and the fear stopped me from doing a lot of things because of MM. Ordinary things like driving, going on a boat, too many things to list. I did get the courage to fly once or twice but suffered from it badly that I stopped going on planes decades ago. So I never have been outside the US except for Bermuda which was on my honeymoon 37 years ago.
I have no recollection of life w/o MM since I got it at age 13.

But I do enjoy things in my own way and on my own terms. I love entertaining, having family and friends over for dinners, BBQs, birthday celebrations. I enjoy golfing but stick mainly to driving ranges and putting ranges. I always loved to dance and still do. I enjoy gardening and home decorating. I enjoy online gaming and own game servers and play everyday with people around the world on my servers. Gaming never seems to bother my MM. I love swimming and being in a pool.
My passion is dogs and I volunteer for rescue organizations and run online auctions for them to help raise money for their medical expenses.

and OFC I enjoy being owned by my 2 beagles.