Discussion in 'Your Living Room' started by sirlanc, Nov 5, 2009.
evolve is an excellent word
I think taking it on day at a time is something you have to do. What works for one may not work for another. I hope that they could find a cure , but it is not cancer and I can live my life. I guess that thinking about what I can still do is important. I would hate to lose my music and my being able to hear. I hope it does not go that way, but I just do not know.
My only thing left is to pray that it goes well. And that is something I still can do.
I voted my condition will deteriorate. I recently has a vns and then now found out I'm bilateral. Im not doing very well right now. I could possibly have a differant out look once I have had more time to process this and adjust to my "new life". I know I will get thru this and when Im feeling well enough I need to get some hobbies or something. Ive been such a workaholic for years even the concept of hobbies is foriegn (sp) to me. Ive realize now my life was not balanced as it should of been.
Granted, people change and things change. But to not be able to do something because of this Menieres thing, that is what sucks. It is not that you still don't want to do it or are capable of doing it otherwise. What you said is not how I was refering to it. I understand things change and you go with the flow. At least the NORMAL flow anyway....
I voted my condition will deteriorate. Just because it has over the last 2 years and I have no faith in the medical community except finding more ways to contoll it but not to cure it. I do my best to keep a positive attitude and not let it effect my life but some days are harder than others.
Time to get some Newbie fresh inputs on this!
I voted my condition will deterioate. I say this because it's gone on for 3 years now and I have no idea what's causing what symptom. I have thyroid problems as well as the dizziness and a list of about 15 symptoms that have stayed the same for 3 years. Some have gotten worse. Not knowing what's causing what symptom makes it hard to believe I will get better. I have a good thyroid doc now who at least knows what's wrong, she just doesn't know what's causing it.
I'm slowly losing all my friends as well because, after 3 years, they're tired of hearing me talk about being sick and tired of me backing out of activities. I'm doing the best I can. I have to work a full time job that is very fast paced and also requires a lot of physical labor that I have a hard time doing. I have to work in a bright flourescent office staring at a computer all day, so by the end of the day I'm so nauseous and even dizzier that I can't do anything else.
Right now I'm just scared of ending up alone with no friends, no support and never getting my life back.
Sunshine67 - gosh you break my heart. I have been there off an on also. I lost a couple of "friends" but i dont think they were really friends. I dont see my good friends much but they are still my friends and we talk almost every day i just don't see them much.
I too am kinda pessimistic as i have been sick for 30 years and it has gotten worse but i'm hoping after all the menopause stuff is over with and when i retire it will get better.
I'm trying to keep the faith that it will but it is hard sometimes.
Hang in there - hugs to you.
I think my outlook changes all the time also it depends on how i am feeling. Right now I'm pretty down and sick but good news is colder weather coming so maybe i'll get a break! I hope.
My outlook definitely changes depending on how I feel at the time. However, I voted my condition will deteriorate because it is becoming clearer and clearer that what I have is a form of MM, I do not believe in alternative medicine and there is zero -- as in none at all -- evidence that any form of medical (i.e. diet/diuretics/supplements) treatment for MM does anything more than delay the inevitable, if that. There is no known cause and therefore no reliable way to alter the course of the disease. There is also no way for an individual to know whether any apparent improvement in symptoms is due to anything they have done, since the disease fluctuates unpredictably on its own anyway.
(There is SOME evidence that antivirals can prevent the progression of the disease in SOME people, but there is no way for anyone to know whether they fall into this category. Plus, I've not had any luck finding a doctor willing to prescribe enough to have a reasonable chance at being effective.)
I guess I could say that I hope someone could help , but I am learning to deal with it , but I too feel my outlook changes from day to day . I have lived in fear of going anywhere for 2 years . I just don't want to be out and spoil everyones good time . I too feel that I will lose friends family and that my hubby will too , well we have lost friends and family . It seems that no one ever calls to invite us anywhere anymore and when I "find out" they did something that we all loved to do together , they just reply , I didn't think you would feel like going . It happened this weekend and I just felt so bad for my hubby and I always say he can go , but he doesn't need to stay with me , I am ok . He feels bad cause he is gone alot with his job , and he wants to spend his free time with me , I always tell him why to watch me sleep ? For a long time I would just suck it up , but he would alwways say I can see it in your eyes you don't feel good . So I hope that we will make it through this , we have been married for 17 years and we are still pretty young 38 and 40 . I will be starting a gluten free diet today and I hope that it will help with the syptoms and we can lead a somewhat normal life . I also have given up working a job I love and that was half of our income so alot of stress alot of guilt and alot of feeling sorry for myself , but I do hope that someday soon I can try and control my syptoms with diet
I think my attitude sucks more right now because some of my friends have stopped emailing back and one has flat out told me I need to focus on other things and stop talking about my health. I totally understand their frustration and that it's got to be depressing to keep hearing me say I feel like crap, but I don't know what else to do. It takes all I have to get thru work every day. As I'm typing this now I feel nauseous and feel like my eyes are jumping around.
I am going to make an appt with a neurotologist ENT that I found because, while dizziness is a symptom of low thyroid and female hormone levels, the ear fullness seems like something else. I've had that since my labyrinthitis 10 years ago and did not have it before that.
I didnt have time to read all the responses but here is my two cents.
I check that my condition will continue to deteriorate. The reason I checked it is because I am a realist and I have been dealing with the beast for over 25yrs. In those years my condition has continued to deteriorate with each passing year, so why should it stop today?? I am deaf in my right from a laby so that ear is not even an issue any longer. I am almost deaf in the left. I still suffer severe vertigo anywhere from 2 to 7 or 8 attacks a month. I have tried everything I can to mitigate the symtoms of this horrendous affliction but all to no avail. The only hope I hold out is that my hearing is bad enough that I can get a CI done. I have an appt for Oct 5th for a CI evaluation.
I replied to this thread when it was first posted and voted that I am optimistic about the future. That is still the case, but had I answered about 15 months ago I would have been pretty pessimistic.
The difference for me has been Lysine and vitamin c. I strongly believe that the herpes virus plays a big part in my potential problems and perhaps so with alot of other sufferers. The Llysine I believe creates a barrier or shield against the virus doing its worst and it has enabled me to lead a pretty normal life. I have neck issues but that is something separate.
The Llysine can take time though, it was a couple of months before I gained control of the symptoms and I have been taking it for over a year and will continue with it.
Lets say I am HOPING to improve but never to get full relief. Have been sitting on my ass/head at home for almost 4 months waiting for mr vertigo. Just as soon I think I am getting better, I get another vertigo last night. The twist is the vertigo is getting less violent as prior. But you never know. At least it is not the 12 or 18 hrs puking session that takes me more than a week to recover.
Tried JOH, tried antiviral, trying out diet, checking out if it is MAV. If it is none of those, I am done working. Last time I was in the office, I spent 4 hrs on my back under my desk while people walked past me. Quite embarrassing.
I admire how you people can still hold a job. All of you are amazing.
I agree daveTO , I admire everyone that can still work . Plenty of times I could have just gave up , but i was lucky and my employer did some illegal things and I won my pension/disability . That is the worst part waiting for the attacks to hit , you are always on guard . Mine are also less violent , but they are almost constant . good luck and hope that your syptom improve . Vicki
Breaks my heart reading everyone's story and how everyone is so sick off and on.
All i hear from friends and family and coworkers is why can't anyone help you - i don't understand. I tell them that there are lots of folks with this and nothing really seems to work. very hard to treat!
I am very optimistic. My symptoms only flare when I'm dealing with some other ailment like a cold. If I can get my immune system stronger, I feel pretty good about my prospects.
I've lost friends too -- it's really the pits. I try to tell myself that friends who would not stick by me through the rough patches aren't really friends, but the truth is that I am a hard person to be a friend to. I always answer honestly when friends ask me how I'm doing. I'm also brutally realistic about my own condition. I do have a sense of humour (mostly gallows humour) but that's really not enough. People prefer to be around optimistic people, it's human nature. I wish I could be optimistic, but I'm not a faith person, I need a reason to be optimistic and I don't have one.
I don't know how my BF puts up with me esp during these bad times. I'm always complaining. I try not to but it's hard when i'm stuck at home and can't even drive to work.