I've been reading over some old posts and it seems many of you have such a positive attitude while dealing with MM. I'm so surprised, especially with those that have gone bilateral, that such a "life goes on" attitude can be maintained. I used to be a "glass half full" kind of gal, but this cruel disease has completely changed my personality. I'm curious, for you upbeat sufferers, was your positive attitude something you had to nurture or are you naturally easy going? If it was work, did you go through therapy, take antidepressants? Does anyone feel like they have lost all semblance of who they used to be?
I'm not sure if I would put myself completely into the positive attitude category but fortunately "life does go on" <wink> so I attempt to move over that way as far as I can & when I start slipping I give myself a firm talking to... for the upbeat side it was actually my wife saying one day that she dreaded coming home as I was mostly in a bad mood & she needed some wind down time before she could deal with that, so from that point on I have made a BIG point in trying to be upbeat when she came home & that just sort of spread out to being most of the time these days. Personally I feel the BIGGEST hurdle with long term dealing with MM is coming to terms with what you have got, that does not in any way mean giving up but it does mean accepting it for what it is... One of the other big things for me was realising that there are a lot of others (both MM & other scenario sufferers) that are way worse off than I am. Has it changed who I am? For sure, but I'm not totally unhappy with who I am now & for sure I'm not going to let this evil little sod (MM) rule more of my life than totally has to.
I'm bilateral & while I try not to dwell on it I do realize I'm nothing like the person I was before MM. I do realize "life goes on", just not the quality of life I would like. I can't help be sad & mostly angry but I try to keep it to myself & not bring others down with me. I have the "fake it until you make it" attitude. It helps to discuss our feelings with someone who has MM. Sorry I don't have any helpful advice. Good luck!
Thanks, Verti and Phil. Great responses. I'm finding the anxiety of MM to be almost as bad as the symptoms themselves! It's so very difficult to stay positive when you don't know what the future holds.
I feel the same way as you acujen I am new to This as well and see how so Many on this forum have it so much worse Then me and are so positive I litterally was Praying for death when I found out I had this I feel so weak when I see how strong others Are, I also get in a bad mood at times and See how it affects my husband and try to Fake it and hide how I feel but at the same Time I think now and then we are entitled To be that way once in a while as long As we don't lose ourselves in bitterness. I am learning To take it day by day and not think too much About the what ifs . These are the cards we are Dealt or being catholic I think it's the cross I have To carry everyone has something and I pray For strength and peace. Good luck to you And keep in mind that there are procedures That can be helpful
Lisa, I've had all the procedures, but I fear I'm now going bilateral. The fear of that is crushing. You say that you try and "take it day by day". But, how?? I hear you and I completely agree, but I don't see how it's possible not to visualize the worst outcome. At least not for me. I wish I could cross the proverbial bridge when I get to it, but my mind just keeps going there...crossing it again and again and again. -Jen
I had to work at it. It was a struggle. I was better at seeing the "silver lining" for others than I was seeing anything positive dealing with this thing. My mom would ask me if I went dizzy that day, if I said no, she would say "so it was a good day". SO many times I responded and refuted that my ear pressure was crazy high, the ringing was such I could not hear over it, I was so exhausted, etc.... But slowly I realized I had to focus on anything positive. So the days that I don't go dizzy...it's a good day (even with everything else). If the ear pressure is "less", it is a good day - don't focus on the fact that it should not be there at all. Even the days I have a vertigo attack, if it is "shorter" than ones I have had with 4-6 hrs +, it has to be considered "good". I truly believe that when I finally started focusing on those things - positive - is when I finally started to deal with this thing better. Worrying about "maybe" going dizzy, or "what if" takes too much energy and doesn't help. Also when I finally realized that it wasn't a negative reflection of "me" to have to ask others for help, it further helped me. It is so darn hard to always be strong, upbeat and pretend that nothing bothers me. Funny that when I ask for help no one responds as if it is a big deal...it's not. People typically are open to helping. It was just my mindset (still struggle with it) on realizing that I can't be everything, do everything and asking for help is not a failure.
Looking into the future was my hardest part. I was 21 when this all started. My whole life ahead of me...like this? There have been many days when I could only look 4 hrs in the future. I literally broke my days into 4 hr chunks and didn't allow myself to think past it. It really did help. Those were desperate days and they did pass. Do not give up on getting better. Keep pushing. Even when you feel too bad to get in the car to go to the dr, chiropractor, etc. Get in the car and go. Push. It can get better. Don't stop hoping. There's always one more thing to try.
Jen I'm sorry to hear your so stressed and I say that now but I do get days that I have Panic attacks . I try to take it slow and think Of procedures I can do if it gets worse it is scary To think whatever is available could fail I'm afraid of going bi lateral as well because I have slight symptoms as well. If you don't Mind me asking how long you have mm and which Procedures you have done ? I still have a long Road ahead being I'm new to this . I do get ahead Of myself with worry too but then try to calm Myself since its not going to change anything hang In there
I'm not always the most positive person and when I have a vertigo attack I sometimes wish I could die. BUT, life is pretty good when I'm not spinning. I try to take one day at a time. When the thought about going bilateral crosses my mind, I think that maybe there could be worse things and then I let go of the negative thought and move on. Today I read that a highway worker was killed, and then at work I tried to console a student whose dad will probably be deported. I don't want to be in their shoes or their families' shoes. I've also been reading books written by people who have Ménière's. These have been helpful. The main message seems to be just keep busy. After you have an attack, get up and move around as soon as you feel comfortable. Yes, I'm no longer the person I used to be and it sucks sometimes. But it's out of my control and I'm trying to find ways to deal with it. Jen- have you thought about seeing a counselor? Maybe they could give you some strategies for coping with negative thoughts. If the negative thoughts don't go away, you might want to try some anti depressants. Do what it takes to be happy. Life is short.
Lisa and acujen, anxiety attacks are common for people with vestibular issues. We don't feel safe with our own bodies, so its difficult to feel safe anywhere. But keep in mind there are many options to try to see which gives you the relief you need. These forums have a wealth of knowledge about MM. A lot more than any doctor I have seen in the 50 years I have MM. Try to think about that when you feel anxious or overwhelmed by Meniere's, you will find a way to get symptom relief, but it does take time and trial and error. But you will get there. acujen unfortunately I cannot answer your question because I don't remember a life w/o Meniere's, I developed this "wonderful" disease at age 13.
I can only post about my own experience but I went Bilateral years ago & possibly because my ENT had mentioned years before (therefore pre-warned) that some sufferers did go bilateral but it was always not as sever as for the first side I guess I never worried about it over much when it started happening, it was just another thing being thrown at me, he was right in my case the vertigo attacks were less sever & didn't last as long also the noises & hearing loss in that ear has been way less than in my right ear.
Yep that was where I started also....of course after having been together for years she saw right through it, but it did at least show I was trying.... from there I moved onto, as I always got a cup of coffee ready for when she got home, started doing it about half an hour prior & then sitting down & thinking through and focusing on the positives that had happened that day (some days were much harder than others of course) which mostly actually got me in a good mood (or on those other days a less bad mood) Sure I still have my "days" but I also make a point of telling my wife that I'm in a bad mood or depressed .... which oddly helps kill those moods quite often
nicmgr: Great insight. I faked my way through the first ear. Never letting anyone (besides my husband) see how it was crushing me. But, with the second ear going, I'm beat down. It's hard to find those small positives, and when I do, I notice it's only when I'm feeling better. Once the shit hits the fan again, then it's back to "my life will never be good again". This has been a tremendous learning curve for someone as independent and driven as myself. I now have to admit failure and vulnerability and limitations. It is not something that comes naturally to me. Phil: How is your balance since going bilateral? Has your vestibular system dampened what you were once able to do, or have you compensated for the deficiency? Can you tell me more about life being bilateral? (You can PM me if you'd like.) I'd really like to hear your experience. Cjbeu: I have never been a fan of therapy nor medication. But, yes, I will now run, not walk, to both. Even I, who thought she was invincible, have realized I've lost control. Vicki: Are your symptoms completely burned out now? Did you stay unilateral all these years?
no my MM is same as it always was but got worse almost 3 years ago, that's when I found these forums and started acyclovir, been taking it for 2.5 years and have been vertigo and symptoms free ever since, although certain things can trigger my MM so I increase my dose during those times. Yes so far unilateral.
acujen - the way I see it, you made it through one ear...and so you can make it through the 2nd. Not saying it is optimum, it isn't. Not saying that it doesn't suck, it does. But the worst thing about this disease is the fear of wondering, the fear of the future. All of that is what it's going to be. Focus on today. Enjoy what you can for today. If today you get up and it feels like an o'k ear day, enjoy the day to the fullest. The hopeless feeling comes when you let this thing take away everything fun. There were times that friends picked me up to take me to the movies because I wasn't sure if I could drive because it was an "off" day. They offered (I wouldnt have asked). They were willing to walk out of a movie to take me home if an attack hits. My point is that if you can figure out some back-up plans which gives you a little piece of mind, you may just get to enjoy more of your life. And removing even one piece of stress, (at least for me) is always good. Stress is one of my major triggers.
To be brutally honest my balance is totally shot, but then again it was really bad prior to going bilateral, if you read my 'intro message' you will know I am one of the fall over on my back vertigo sufferers which doesn't seem to be the common symptom for most sufferers. Sure I have learned to compensate for it all over the time it has developed & one of the hardest things was coming to accept that I was no longer able to be totally in control of my own travel movements, but that acceptance came to me in time. Also remember (very obvious when reading on the site) that every different MM sufferer has different symptoms, severity of particular part symptoms, etc. sure they overlap but are different for each individual. So finding out what other people have gone through isn't actually all that helpful overall to an individual case. More useful by far is coming to accept you have MM & learning to deal with what it throws at you..... oops sorry got carried away, lecture over
Yes, I get it. I know we are all different. I've spent years reading of people's success's with the same treatments that have failed me. I guess by asking about your bilateral experience, it's more to know that someone else is going through it and they aren't in hell. It's a positive for me. Sounds like you're doing well, Phil. Wouldn't you say?
I too am bilateral. Some days are hell some not quite so bad. What I find the worst effect is the not hearing. I loved listening to music, but that is out for me now and that is a great miss. However, MM is not life threatening, there are many a poor souls who has a limited life expectancy because of their illness. So what have we got to complain about. Make the best of what you have and adapt the best you can.
Funny when I first read your message my first thought was "doing well" isn't exactly how I would describe it, but after reflecting on it all over preparing & cooking our dinner I think you are completely right I am actually doing well, which still seems/feels odd to me <grin> ...... & unlike Rod at least I can still listen to my music on the majority of days which is a huge bonus for me.