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I am so lonely

Discussion in 'Your Living Room' started by chermcgr, Apr 23, 2015.

  1. chermcgr

    chermcgr New Member

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    May 14, 2014
    I hate this meniere's and the mav It has been a circle of not feeling well and missing out on things. I am taking so many pills it drives me crazy just had another gent #5 and nothing. I am bilateral so dr won't do more than that. I have stopped working and feel useless. My house is a mess doing dishes is a big deal. I think I am having a bout of depression on top of everything else. I can;t seem to break the cycle. I have thoughts of ending it all if this is how it is going to be but I know that is not the way to go. I just want some kind of life back. I know this will pass but it feels like hell going through the cycles. Thanks for letting me vent.
     
  2. imback

    imback Member

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    EVERYONE here can relate to what you are saying and going through. It is hard. I often think about what people without this take for granted. Not being inhibited at all. As far as getting better there are many on this forum that have gotten better. I was here 10 years ago and the vertigo miraculously went away on its own. Ten years later I am affected again. Ten years ago, the drug everyone talked about that got them better was valium. I was glad I did not need to take it, because it can be addicting and you have to increase the dose as time goes on to obtain the same result. I would have taken it if I did not get better.

    This time the anti-viral drugs are being touted and both times John of Ohio's regimen is getting positive reviews. I can't even get an ENT to listen. We are own advocates and I continue to battle. I am sure you are investigating treatments. I wish you luck and this forum is great support. Vent all you want.
     
  3. Sharon406

    Sharon406 Member

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    This is a "lonely" disease regardless how many friends and family you have around you. Unless you have it there is no way they can truly understand. I tell my family to stand in the middle of the room and twirl around about a dozen times and then think how they would feel having that dizziness 24/7. Others use to tell me my eyes would light up when I laughed. Now I look in the mirror and wonder where that light went to.

    But I have learned to appreciate the "good" days more and I have learned to accept my limitations more. However I WILL NOT give up looking for something to help and I will not give up on life knowing the terrible pain it would cause those who love me.

    So I cry when I need to, and I stay in bed when I need to, and I live with dirty dishes in the sink when I need to. Then I pick myself back up and get back in the fight!

    Good luck to you. imback is right....this forum is great support.
     
  4. redwing1951

    redwing1951 Well-Known Member

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    I am so sorry you are going through this. Depression on top of meniere's is pretty common. I am wondering if it is time for you to find a new ENT/OTO? It sounds to me like he/she is afraid to go any further with treatment because you are bilateral? A second opinion might give you some more options. My own personal experience, gent is not going to help you out if you have already had 5? Also, for the depression have you talked to your physician? There are ways to help you out in that area too. In the meantime try to get some exercise, get the blood flowing in your body. I know for some folks this sounds impossible but if you can get out and walk just for 5 - 10 mins at a time I think you will find some relief. Mediation and Yoga are also very helpful for depression. We are here to support you, I hope you find relief soon.
     
  5. buglady

    buglady New Member

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    May 12, 2014
    Chermcgr, I understand your feelings. I used to be such a social person, but now if I am invited anywhere, I have to determine whether it might be too loud an environment, if it's close enough so I can drive or get up the courage to ask for a ride, and then worry once I get there if I am doing ok to make it all the way through. The loud situations are becoming a huge problem for me.

    I do what I can and have learned to like being alone in my quiet little house with my precious cats. A normal life back would be great, but I have doubts that will ever happen. One huge bright light is that the vertigo part of Meniere's has gotten MUCH better through the years. The sensitivity to sound has gotten way worse. I do have a much more normal life than I used to. I have to hang onto that!!

    Please hang in there. Talking to us about it helps.
    Margie
     
  6. nicmger

    nicmger Member

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    This thing can definitely mess with your mind without even trying.

    There was a long period (over a year for sure) that I got up, went to work, came home; repeat. The ear pressure, constant ringing and exhaustion was never ending. My attacks were frequent enough and without break from the other symptoms so never sure when I would go full vertigo for hours. The more I only repeated this same thing without stepping or risking doing anything else, the worse it got.

    It took me too long. But I finally started focusing on the good things of each day (if I didn't go full vertigo spinning for hours, it was a good day; if I had a vertigo attack but it "only" lasted for a couple of hours, a good day; if the ear pressure was slightly better than day before, good day.) I also accepted invitations to go to dinner with a friend, a movie, a visit to the park - initially with getting people to pick me up, and/or prepare for rides home if the worst happened.

    Once I started shifting my mind focus to the positives and doing other things - it really did turn things around for me. But it was hard. How do I appreciate a good day when the ear pressure is almost painful, I can't hear, the ringing sounds like a fire alarm? Ummmm doesn't sound good? BUT there was still positives to focus on. And I had to keep reminding myself, many have it worse. And they do. Even with this disease some people's lives were more impacted, some didn't have support, some didn't have insurance, some didn't have ..... Point was that once I started looking at whatever I have that others don't versus the things I don't have any longer, something changed for me.

    Good luck. I guarantee that this is a good and safe place and people do "get it"; have and are walking in your shoes. You are not alone.
     
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  7. chermcgr

    chermcgr New Member

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    Thanks everyone I was having a pity party I need to focus on good things like you all said. I will try. I know it will get better been reading alot on here again and realize I am not alone.
     
  8. Michaelmusicianwithmenier

    Michaelmusicianwithmenier New Member

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    Hope you are feeling better today. If not from symptoms in the fact that you know you are not alone. I am very new to the website but it has already given me more inner strength to go on. I have had many days feeling what you were feeling so I can empathize as I know many can. Again hope you are stronger today.
     
  9. artlover

    artlover Member

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    I finally went on Anti-Depressants when I couldn't take it anymore. I knew finally it wasn't going to go away. I still have lost a lot of friends but a few have stuck around. It doesn't really bother me anymore. I just make the best of it. You might want to try these instead of suffering. There are just some things that will never get better, and when i accepted this, things got easier. Hang in there.
     
  10. Brownrecluse

    Brownrecluse Member

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    Chermcgr--I concur with the comments all have made here, and wish you the best. I have posted a fair amount, so to be brief, I became severely bilateral in May, 2002, had to retire on total disability from a job I loved, and within 3 years, despite a labyrinthectomy, cochlear implant, and an array of other treatments, was effectively house-bound except for doctor visits and a few other essential things. No socializing, except the rare lunch or dinner with one or two friends at our home.

    I did not get depressed, because of three things. First, I realized I had a great run, even though I was just shy of 54 when I was struck down. Second, I had and have a very supportive wife, who has stuck with me through everything when many would not have, as there are days when I am not exactly the bluebird of happiness. Third, the internet. I maintained virtual friendships with many of my real life friends, who understood we could not be friends as we were and do the things we used to do together--go to football games, hike, kayak, have karaoke nights, work together on projects. I still have those virtual relationships, and they are very real. In some ways, my friendships have grown stronger over the Internet. I would encourage you to try to do the same.

    In addition, never lose hope. I had. I thought just two months ago that I would be dead within a year, and welcomed the prospect. But we made a decision to leave the noisy, nasty megalopolis where we were living in Southern California and move to a far quieter, more pleasant place in Northern California. Within a week, I was walking without a walking stick (I had been forced to use one even in my home before), going to malls and big box stores, even going to restaurants with family and friends, and walking around in the open. My hearing has not objectively improved, I am sure, but I definitely understand conversations more. In short, my life has improved 1000%. Maybe more. Now, I am sure this would not work for everyone, and not everyone can leave where they are to find a better place Menieres-wise. But I mention all of this to show that with this curse we all have, you just never know. I am actually hopeful and happy for the first time since I was stricken, we are buying a nice new home that I love, and I want to live a long time now to enjoy the new circumstances in which I find myself.

    So be strong, and be creative in looking for things you can do and ways you can interact with people. Don't let the beast win. Never. And good luck, and consult this forum often. Great people here, who share their experiences, successes, failures, and resources. To me, the best Menieres site on the Web.
     
  11. deadeye

    deadeye Member

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    glad you found this board; i had a vertigo party this morning and just got out of bed; i too have a loving, wonderful wife; don't know what i'd do without her; hang in there and read; i pray you find some relief; several things have helped alot of people; so glad you are feeling better BR! wow God bless you all
     
  12. Hollyflo

    Hollyflo Member

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    MD effects physical, emotional, and cognitive aspects as well as creates quite an ongoing existential crisis. Having my physical symptoms 80% under control only to discover cognitive impairment, which I amm being tested for now, and the terror and depression that comes from not having any idea of how I will be able to support myself financially..no family…and now looking for a low income therapist.

    Many days a month this gets so overwhelming that the thought of just recycling this body seems welcome. I spoke with a woman early on who has been disabled from MM for 10 years now. I asked her about support groups beforte I found this site. She laughed and told me the story that she was in a MM support group in Florida with 12 people. At the end of one year, she was the only one who hadn't taken her life. So much for suport groups ::)

    I tell you this because as sad as that is it made me laugh out loud and gave me space to be gentle with myself as this life unfolds with this disease. Truly I am glad for this support group which I think works because the great informational basis of it and the emotional support working together.

    Hang in there with us!
     
  13. AnneT

    AnneT Well-Known Member

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    Thanks all for these posts. I had a vertigo this morning- grateful it didn’t last long but now I’m too wobbly and drugged to drive to what I was looking forward to today. Pity party. Well-deserved pity party, but... have a rest and maybe a little cry, and then I’ve got to do little bits of what I can, work the heck out of a gratitude list. I was able to have a phone chat with a friend, but yes this is an isolating lonely disease. I too feel useless and “what’s the point?” But that only takes me dark places. I’m hoping to go for walk in the sun (cold but sunny) after nap time.
     
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  14. solari

    solari MM.org Janitor Staff Member

    Admin Post
    It's really important to be easiest on ourselves most of all...

    Hugs!
    Ray
     
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