Marriage and Meniere's

http://www.more.com/relationships/marriage-divorce/how-marriage-survives-when-one-partner-gets-sick

 

Ron,
I am sorry to hear about this. Chronic illnesses puts a strain on marriages for sure. I am sorry to hear she is depressed. But on the positive side, you are doing something about it and always have and now you started a new treatment which I will not mention by name that offers hope and possibilities. MM is not a death sentence, which means there is always hope and new treatments are being developed for it all the time. Try and remind yourself and your wife of that.

No one knows what the future holds for them, not me, nor you, nor your wife, no one, and I don't want to sound morbid but no one gets off scot free in life and the older we get the more chances of someone developing something. As miserable as Meniere's is and is it one of the most debilitating illnesses, we will not die from it nor do we lose any mental capacity from it, there really is so much worse out there. I know it is little consolation when we are reeling from vertigo and MM is stopping us from doing the things we love with the ones we love, but it does stop and there are good days.

Nothing stays the same in life, not good and not bad, things change all the time, sometimes not as quickly as we wish but they do change. I will keep you and your wife in my prayers.

 

Ron--

That is very tough. All I can say is be as supportive and understanding of your wife's frustrations as you want her to be of yours. Marriage is compromise in many ways. And for most of us, our marriage vows included "in sickness and in health." The words are nice. But the realities often are not.

My ex would have been gone the week after my first major Menieres attack, taking as much of what I had with her as possible. She wasn't evil, just very self-centered.

My second and last wife of now nearly 30 years married a man at the top of his profession, with a national reputation in his specialty, who traveled in the highest social circles of one of our country's three largest cities. We embarked on a whirlwind. We both worked insanely hard, but were also very publicly involved. We socialized, attended concerts, the ballet, innumerable awards events, you name it. We were physically very active, and while vacations were very much catch as catch can, when we did them, we went all-out.

Then, only halfway through our marriage at that point, I was hit with severe bilateral Menieres. Our lives basically ended. Mine completely. Hers, insofar as it was linked to mine. I had to go on disability, could no longer go out much at all, and then mostly to doctors. Could no longer drive. Became a recluse. We lost our community standing and most of our friends, and became very isolated. And in the intervening years, I had severe additional health problems, including major heart attacks, several serious falls resulting in numerous broken bones. As recently as last week, I went in for a pacemaker, ended up with a pneumothorax, and what was to have been a simple observational overnight stay in the hospital turned into a four-day ordeal with three surgeries altogether.

Through it all, she has been magnificent. She would kill herself before leaving me. She is beyond loyal. And I am not easy to live with given all I have lost. But she has lost at least as much, since I am vastly different from the man she married. I went from kind of a big deal to basically nothing, a journey she took with me. Do we get crabby and irritable? You bet. Depressed? Only rational given our circumstances. Yet she soldiers on, and takes care of me without real complaint, despite having serious health problems of her own. I am frankly in awe of her. Indeed, some years ago, the wife of one of my best friends and former partners actually asked my wife why she didn't leave me. Her reply was simple: "I love him. I would never leave him."

If I have learned one thing in life, aside from how much I don't know, it is that every relationship between two people is unique. And no one not in the relationship can really understand its dynamics. I hope all works out for you and your wife. It will not be easy. But try to find whatever you can both do together to preserve and expand your relationship (for me and my wife, it is severely limited, but it still works--our two primary "activities" together are watching captioned TV shows at night, and working together on the novels she has started writing over the last few years (she writes them; I edit and make suggestions along the way.) I still handle all of the family paperwork, and do modest housecleaning chores commensurate with my fatigue levels and other limitations. She handles all outside communications and errands. It is not entirely balanced--she does far more for the common good than I do--but we have made it work. And let me not sugarcoat this: every day is different, and every day is hard. That is one of the "gifts" Menieres gives to those of us who have severe cases, and to those committed or doomed to living with us.

My apologies for the length of my reply. Veterans of the old forums will know that I do tend to run on. One of the consequences of isolation; posting takes the place of conversation, in a way. My best wishes to you and your wife. If your mutual love is strong, it will ultimately see you through all of this.

 

A testimony to what the marriage vows are 'all about'! Thanks for sharing

 

I don't think what BR wrote is a testimony to marriage vows. His wife stays because she loves him. You don't take a vow to love someone; you just do.

 

Yeah I get that. Without longstanding love, the vows can't be respected. She loves him. It's not her vows that make her stay; it's her love and acceptance of him.

But whatever. You're entitled to your POV.

 

I remember the part of our vows that says, "in sickness and in health." I know it's really hard on the other person when illness strikes. I also understand her frustration at not being able to go out and do things together. I think that's where compromise comes into play. Maybe she could go out with her friends occasionally. If she loves him, they will find a way to work it out. Laying a guilt trip on someone who is I'll is not the way to go. Guilt=stress= increase in symptoms. I hope you guys can get beyond this.

 

I clearly had computer issues because the response I thought I sent yesterday is not here! So here I will try again.

I think that any type of illness impacts both people in the relationship. I am "fortunate" in that I am not married so I don't have to worry about trying to be something. But with regards to your "obsession" over trying to find assistance on the internet...At least you are trying. That should show your wife that you are doing everything and anything to not just fix this but to try to minimize the impact on her. You try to go to dinner or restaurants; maybe it doesn't work out...but you are trying. You are trying all potential treatment options - you haven't given up. To me that should mean the most that you are TRYING. If it were me it would make it worse if you had simply sat back and said nothing I can do, no help in sight. Obviously everyone has different opinions and expectations...but mine are that you are trying and haven't given up. Good job.

Good luck with your current treatment protocol.

 

I understand. Unfortunately with this (and in a lot of medical situations) I have learned that we have to be our own advocates - and to do that we have to learn and know all options...not just the ones that our doctors want us to know about.

 

I think when it comes to Meniere's the difficulty most doctors have is the very nature of this thing is random. So there will also be the doubters and critics over all treatments because someone will also question if it is the treatment helping or if it is just in a hiatus. And in those cases the questions are fair....but because of the random nature of this thing it would seem more helpful to embrace anything/everything that could provide relief vs discounting them and not trying at all.

 

I think if Doctors were to experience MM for a period of time, they would be a lot more open to treatments outside the box, and throw their text books out the window lol

 

Totally! And there are so many times I really wish I could let someone borrow my ear for 5 minutes so they can hear how maddening it all is. I think people have a hard time imagining what it is really like.

 

I agree 100%. If they ever had to deal with even ONE of our attacks they would be trying anything and everything to fix it. They surely wouldn't tell people who felt they were no longer able to handle it and requesting destructive surgery that "you aren't that bad yet". ;D

 

While we have gone on a tangent here, let me say I think it is partially true that if doctors got MM they would do out of the box thinking. I say that based on one anecdote, from my first Menieres doctor, a specialist who really did understand the disease and put me through a ton of experimental treatments. Ultimately, he did a laby on me and implanted a CI (which never worked). After several years, he got frustrated with me and the disability paperwork my insurers required, and because I had not been "cured." So I left him for a series of other doctors, and am about to try Dr. Derebery at the House Ear Insitute as probably my last stop on the medical train, mostly because she is a good friend of my cardiologist and he is insisting on it.

BUT. Before I left my first doctor, he told me, in addressing how MM affects everyone uniquely, of a professional colleague of his who was a cardiac surgeon in Japan and who had MM. Obviously a mild case, or at least I hope so. Because that doctor's "treatment" consisted of downing a liter of Kirin beer before starting an operation! It seemed to stop vertigo attacks for him long enough to do his procedure (not sure I would want him operating on MY heart!) But I do not think he worked with other doctors to find other answers to Menieres (probably afraid to tell them he had it for obvious reasons.)

But yes. I think those who (1) have Menieres and (2) have the scientific expertise to analyze it and consider ways of treating it would definitely be outside the box thinkers. John of Ohio comes to mind; not a doctor, but a biology teacher, and thus someone grounded in the anatomical, hormonal, chemical and other issues surrounding our lovely illness.

Our problem is that not enough people have Menieres, and not enough of us who do have a severe enough case to make us a medical priority. I mean, the disease is not fatal to life qua life; just to the quality of the life we have. That is a simple, if harsh, reality. In some ways, more research has been done on Menieres than one would expect given all of that, and I think the reason is that our illness is "interesting," meaning a challenge to the medical profession to understand, much less be able to treat or cure. That is our hope--that we stay "interesting" enough to attract the attention of a researcher who can find a breakthrough.

Sigh. Again I ramble.