I got sick five years ago and was fortunate enough to have a mother who's an interpreter and knows a thing or do about everything ear-related. I also had a good doctor and did my own research about Meniere's disease online. However, back then it never occurred to me to look for support in social media. I never read blogs about Meniere's disease or searched for any groups or networks. I was pretty much alone with my disease, but I usually prefer it that way. I'm weird and isolated like that.
I know that doesn't work for most people.
Here are some things you can do if you've recently been diagnosed with Meniere's disease, or if it's something that you might have and you just haven't been diagnosed yet.
Do your research. Meniere's disease symptoms also fit some other conditions, so make sure you know what is happening in your body. This way you can provide your doctor valuable information that can help him help you. If/when you get your diagnosis, knowing enough about your condition helps you know how to take things from there on.
Get a good doctor. Trust me, it makes all the difference, and not just when you're getting diagnosed or when you're newly diagnosed. As your disease progresses there might be some new developments, such as permanent hearing loss. A good doctor recognises the need of a hearing aid early enough, and gives you comfort when you know you can trust this person is doing everything they can to help you.
Be wary with support groups. Ok... They all mean well, I'm sure, and some of them are genuinely great places to find similar-minded people and the support you need. No one understands you better than a person with Meniere's disease. However, some groups and networks present highly negative thoughts and attitudes as if that's what everyone with Meniere's disease thinks. Self-pity and dwelling gets you nowhere. It is up to our own attitudes how our lives turn out. Don't give Meniere's disease the unnecessary negative power over your life, and make sure you find the right kind of group/network/people for you.
Find your triggers. Needless to say, this helps you avoid them and you'll feel a lot better. Common triggers are stress, high sodium, alcohol, and caffeine.
Try not to be afraid. For the first six months or so after my doctor told me I might have Meniere's disease I lived in constant fear of attacks. What if I had one at work? What if I had one on a plane or while visiting a friend in another country? What if I throw up on a public place? Will anyone help me? Forget all of that!!! I know it may seem impossible, but you can't spend your days in fear, or one day you will realize you can't go anywhere. It may take time to adjust to your new normal, but it will happen. I'm not saying it will be all good, but it will be ok. Allow yourself time to deal with the changes you need to make with your lifestyle, and let the people close to you know what's going on.
I hope you'll find some comfort if you're feeling down. People with Meniere's disease are tight knit, because there's not too many of us, and because we all know not enough research is being done. We don't have a cure, but we have each other.
Take care :)
I know that doesn't work for most people.
Here are some things you can do if you've recently been diagnosed with Meniere's disease, or if it's something that you might have and you just haven't been diagnosed yet.
Do your research. Meniere's disease symptoms also fit some other conditions, so make sure you know what is happening in your body. This way you can provide your doctor valuable information that can help him help you. If/when you get your diagnosis, knowing enough about your condition helps you know how to take things from there on.
Get a good doctor. Trust me, it makes all the difference, and not just when you're getting diagnosed or when you're newly diagnosed. As your disease progresses there might be some new developments, such as permanent hearing loss. A good doctor recognises the need of a hearing aid early enough, and gives you comfort when you know you can trust this person is doing everything they can to help you.
Be wary with support groups. Ok... They all mean well, I'm sure, and some of them are genuinely great places to find similar-minded people and the support you need. No one understands you better than a person with Meniere's disease. However, some groups and networks present highly negative thoughts and attitudes as if that's what everyone with Meniere's disease thinks. Self-pity and dwelling gets you nowhere. It is up to our own attitudes how our lives turn out. Don't give Meniere's disease the unnecessary negative power over your life, and make sure you find the right kind of group/network/people for you.
Find your triggers. Needless to say, this helps you avoid them and you'll feel a lot better. Common triggers are stress, high sodium, alcohol, and caffeine.
Try not to be afraid. For the first six months or so after my doctor told me I might have Meniere's disease I lived in constant fear of attacks. What if I had one at work? What if I had one on a plane or while visiting a friend in another country? What if I throw up on a public place? Will anyone help me? Forget all of that!!! I know it may seem impossible, but you can't spend your days in fear, or one day you will realize you can't go anywhere. It may take time to adjust to your new normal, but it will happen. I'm not saying it will be all good, but it will be ok. Allow yourself time to deal with the changes you need to make with your lifestyle, and let the people close to you know what's going on.
I hope you'll find some comfort if you're feeling down. People with Meniere's disease are tight knit, because there's not too many of us, and because we all know not enough research is being done. We don't have a cure, but we have each other.
Take care :)
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