I think I need an ALONE vacation.

Amen brother.

Your speaking my language now my friend.

 

Well, I'm not a man, but I still think about taking a vacation by myself ALL OF THE TIME. I'm so tired of having to ask, "could you repeat that?" "Could you speak more slowly?" and reminding friends/family, "if I can't see your face, I can't hear you."
I fantasize about going off on my own to a remote log cabin. Just me, the dogs, books...and the sound of silence.

 

I wish it would be okay to go out, alone, wearing a placard that reads, Please don't try to talk to me, I'm deaf. Life would be so much easier. Just tonight I was out, in a noisy environment, when I saw someone I know. I turned around and walked the other way. I wasn't up for the struggle to carry on a conversation. It can be way too tiring.

 

Sometimes I feel so alone, and there are many people around me. I do get tired of having people repeat themselves and not knowing what people are talking about. What makes me very sad is that sometimes I avoid being around people that I love. It is hard. Why do I feel so safe alone? Sometimes I do feel like I just want to fade out of existence....but trying to do better.

 

Onedayatatime: I read your post again, and couldn't stop crying. You expressed symptoms and feelings that I can totally relate to, even though I have improved. I hope we see some improvement. My ears are roaring tonight and I just shut up about it now. I don't tell anyone anymore, because it is so constant now and so painful to deal with. It makes me very sad.

 

I'm in a great deal of pain, tinnitus same drill here Jimmy. Some days, I cry my eyes out, unabashedly. So many times though I isolate. Why? Because it's easier, because I don't have to worry about the possibility of public humiliation, because I'm sick and tired of being sick and tired. On my, "brave," days as I explained to my teenager, I go out and I face the scrutiny, the need for explanations to total strangers, and the inability to have conversations. I do this because someone needs to be able to, someone needs to set the precedent for the public, someone needs to be able to stick up for us when we're not too sick to go out.
I was humiliated, publicly, a few days ago around my teenager. While it was horrible, I was able to set an example of an appropriate response to dealing with these issues in public, and later we talked about the need for advocating for this illness. My newly acquired teen was interested when I explained to him EXACTLY what you're talking about, and how for every time one of us is able to go out, ten more may be staying at home. People don't get it.

 

If you are deaf could you not get a cochlear implant?

Use the tools available to you to make your life better if you can.

 

Bone anchored hearing aids and cochlear implants are expensive, Bulldogs. Not to mention the cost of the procedure. I have really great insurance, but my BAHA/procedure was still expensive. Even if that isn't the case, I know from experience that my BAHA only helps so much. I do admire your pugnacious spirit. Problem solving IS the best way to deal with this illness when possible. Too bad there's no one-size-fits-all.

 

I agree, Autumn. It's not like anyone is giving those things away. Also, the doctors say when one can have a cochlear implant. You can't just go in and ask for one. There are guidelines that are followed to determine when a person qualifies for an implant.

I'm deaf in one ear and wear an aid in the other. I can hear some sound and know when someone is speaking, but I can't understand the words. Last time I had an evaluation, I didn't qualify.

 

That's outrageous Cheryl! I do believe that the guidelines are so strict to save money by not offering the procedure to a wider group of patients.

 

If you are working, a lot of states will cover this cost, especially blue states. Check with the dept of health services in your state to see if they can help.

 

Onedayatatime - that is most of my fishing trips, although I am blessed that my youngest son is understanding and supportive and loves to go with me when he can.

Cheryl, you and I are in the same boat with the 1 aid and 1 deaf ear - gets to be a real pain sometimes. Have actually had a doctor ask why the cochlear implant was important to me since I am retired - needless to say, I am no longer his patient.

It seems the patronizing sympathy, funny looks, and animated gestures by those who don't understand is as bad as not being able to participate in group conversations and enduring the other problems this disease brings.

 

^^^nice

Make those dream a reality!!! You have many options to kill the beast and live a normal life. I am sympathetic to the laby. What is your biggest worry?

 

I may need an alone vacation as well because I'm the spouse of a person who suffers from Meniere's disease with recruitment.
He has a bone anchored hearing device. It doesn't work very well for him especially with recruitment. So he really only wears it
when he goes to the Dr. or certain other situations where he needs to understand what's being said. I get frustrated because I apparently speak to soft. Noise is a real factor with recruitment. Just normal noises like kitchen, restaurants are a very painful experience. So social functions together are rare. Just wanted to share that it effects not only the patient but the loved ones.

 

Spouse, my husband can totally empathize with your experiences and difficulties. I really try to remember it's hard for him too and try to my best to get him to attend functions, or participate in activities apart from me since I am so effected by it all. Fortunately for me, he is very supportive and understanding, even if he is terribly disappointed by the reality (such as having to cancel an upcoming anniversary trip). MM has truly changed our lives together. When you're in a relationship both parties share in the good and bad. Hopefully, there is more good.

 

This thread is so real, and heart rending.

My hearing is still fairly functional is social settings. Probably a 40% loss in my MM ear. Quiet talkers and mumblers kill me.

Just a few points:

--OneDay, when Autumn mentioned gender, I think she just meant that though women are naturally more social, her condition is such that she still would like to vacation alone.

--On the patronizing manners of others: I've always maintained that as sufferers we need to be sympathetic to those who have to try and negotiate interaction with us. They can't internalize our situation, so they're kinda flying blind, the poor souls. Like secret alcoholics, we can be very touchy and judgemental of what people say to us. Granted some people are very untactful in their approach, but as long as their heart is in the right place. It's hard on them too. Sometimes I think we expect everyone to have the perfect bedside manner. What's the old saying? "What do you say to a dying man?"

It's hard not to be touchy though. Emotions are emotions. After I've asked my gf to repeat herself too many times, she'll (intentionally?) start talking too loud. I'll snap, "For Christsake lady I'm not deaf!"

I guess we're all in the same crazy boat. Both the healthy and the unhealthy.

--OneDay, where in Arkansas do you live? I lived in Little Rock.

--I've found the best way to ask people to repeat themselves, or of letting them know you're hard of hearing, is simply to say a pleasant, "what?" Everyone will get the picture pretty quick. No need to come up with long, apologetic niceties like, "I'm sorry I didn't quite catch that", or "I'm slightly hard of hearing." Etc. Nope. Just a quick "what?" gets the point across without stress or fanfare. Just relax and let it fly off your lips as many times as you need to.

Or don't. If someone keeps to their low talking ways, I'll just nod and sort of ignore them. Oh well.

I realize I have the luxury of being a very independent male. I know it must be much harder being a social/family oriented person who people rely on to keep things merry.

 

Spouse - know that we feel guilty ALL the time! I know my boyfriend wants to go to the movies, to restaurants, to bars, etc, but it is SO hard for me to do those things and then I start having anxiety about what I'm doing to him. The amount of times he has come home from work early, held my hair back while I was vomiting or literally picked me up off the floor are too numerous to count. I'm definitely not the same person I was when we got together 11 years ago and I feel more terrible about that than he will ever know.