You can never make definite plans. You never know when a Meniere’s attack my hit so you simply can’t make plans that can’t be broken. I’m very lucky that most of my friends are very understanding about this. I was invited to 2 parties today and I had to cancel on both of them. I am so grateful that my friends will continue to invite me to things, even though they know I may not always be able to come.
Sometimes you lose friends because you aren’t reliable. (or I should say, You find out who your real friends are.) Recently I found out why a friend of mine hadn’t been in touch with me for months, hadn’t replied to my reaching out…nothing. She feels that it’s a 50/50 chance that I’ll ever keep plans. I’m simply too much to deal with.
I have to be prepared for the worst. My doctor calls this a disease of Random Punishment. That means an attack could hit at any time, no matter what I do, no matter where I am. This means not driving more than 15 minutes away from my home, on good days. Often, not driving at all. Having a walker by my bed and downstairs in case an attack comes on, I found this really helps me when I have the disequilibrium, I’m not completely incapacitated, I still feel partially independent. Always having my medication with me.
Take my daily medications every day. I don’t know if the diuretic really works, but I’m afraid to find out if I would be worse if I didn’t take it.
Stick to a Low Sodium Diet. Again, I don’t know if this actually helps me, but I’m too afraid to find out what would happen if I didn’t do this. Besides, people eat way too much sodium. We all really need to be aware of how much sodium is in the foods we eat.
Keep my emergency medications with me at all times, and take them at the FIRST sign of vertigo. I know I mentioned before that I should always keep my medications with me, but I felt this needed repeating because it is so very important.
Living in silence some of the time. Since my Meniere’s is advanced, and in both ears, if I have an attack in my left ear that really diminishes my hearing, I simply can’t hear. I have a little ear piece that amplifies sound, but often it is distorted due simply to the fact that my hearing loss is different on different frequencies. This is very hard on me and I’m sure it’s hard on my husband and friends. One day I can hear fine, the next day I can’t hear them at all, that has to be confusing. And I get so frustrated.
Feeling left out some of the time. Sometimes I feel left out simply because I can’t hear what people are saying. Other times it’s because I can’t attend functions I’d like to with my friends because I can’t hear, drive, am too dizzy…
Feeling hurt and angry some of the time. I think part of this is a because I not only have Meniere’s but I also have other chronic conditions. It’s hard not to get mad at the world sometimes. It’s also hard not to be hurt when you are all alone and don’t feel like anyone could possibly understand.
Finding out how very lucky I am. Every time I have an attack, I am amazed at how well my husband handles it. If I had to do this alone I think I would go insane. I’m also very lucky to have the wonderful friends I do. They are very understanding, treasure the time we get to spend together, and never forget about me.
4 thoughts on “What Having Meniere's Means to Me.”
I’ll be here for all the hand-holding you need! I may not always have the answer to fix the problem, but I’m always ready to hear you out! (Yes, pun intended 😉 hehe!)
Thank you Christy. You have been a good friend to me, and we’ve never even met. I appreciate all that you have done for me, and continue to do.
i’m also a meniere’s fighter. for almost 14 years now. just want to say hang in there. fight the good fight. you mentioned in your other entry something about being in n.c., i think?? i am too. in western n.c. i have a blog as well if you are interested in checking it out. currently going through gentamicin injections but have tried about everything else out there outside of serious surgeries.
hope you are feeling much better! i love the layout of your blog!!
It’s so ironic because I just found your blog earlier today. I love your new dog!
My doctor has never even mentioned gentamicin injections to me. I don’t know if it’s because my Meniere’s is so advanced, or because I have bilateral Meniere’s.
I would love to keep in touch.