Saturday, August 4, 2018

Ménière’s and Me

Ménière’s is different for everyone. Though I have been doing bad, there are others worse off than me. It’s been a source of comfort to be part of Ménière’s Worldwide and to be part of their daily lives. 

For a rare disease there are many of us with this debilitating disease. We are in different stages of it. I don’t know exactly what stage I am in. I thought stage 2, but who knows... I may still be in stage 1.


There needs to be more research into a cure. The worst part is that the professionals do not have all the answers. Heck they don’t always know much about the disease. I hope my new ENT knows about the disease and can start me on a treatment regimen that will help alleviate my symptoms. Is it selfish of me to want to go back into remission?

I was in remission for about six years. Tinnitus and the occasional tilting/off-balance were my only symptoms. I came out of remission in December at Disneyland. The bathroom walls were waving up and down... a new symptom for me. I was a bit unsteady, really hot and nauseous. 

My biggest mistake was going on Space Mountain. The movement coupled with darkness and occasional points of light made everything worse for me. I ended up throwing up in some bushes. (The trash cans have side slots at Disneyland.) I was too sick to locate a bathroom until after. 


I guess I downplayed how I was feeling because our friend didn’t even realize I was having an episode. I am not sure if this is good or bad. On the one hand I want others to understand, but on the other I want to appear normal in public. It’s a no win situation. 

Lately my head has been swirling sometimes even without moving. I have been having rotational vertigo (I feel like I’m spinning not the room.) My balance is off. I lean or fall to the left, I stumble, but I can still seem normal to most. I have started carrying my cane in public just to keep me upright. 

There are times when the tinnitus screams at me drowning out voices who may or may not be speaking to me. Noises hurt my ears, so I can’t listen to tv or radio at loud volumes. This means I may miss what the tv says. Throw in my husband’s constant vlog watching, my brother or sister-in-law talking and the pets whining/meowing and hearing is becoming increasingly difficult. 

Mostly my vertigo has been clockwise, but lately it has switched directions. The other day it was rapidly changing back and forth which may be why I had so much trouble on Tuesday. My brain fog was so bad that I can barely remember it. 

It’s difficult to explain brain fog... it’s like my head is enveloped in cotton wool. My head hurts. Sometimes I lose words when I am speaking. But the worst part is the inability to concentrate. Even reading is hard. And I love to read. 

The worst thing is that I cannot drive, because I have been either dizzy or in vertigo. I had the same tank of gas for 3 months and the only reason I needed to fill it up was that others borrowed my car. 

I am still learning to cope with the new me. I will continue to fight Ménière’s. It won’t defeat me. I will enjoy life. As long as my husband is by my side I will live. Thankfully I have Ralph, good friends, and family who understand. 

Keep on smiling, I know I will. I hope you are all spin free.

Love, Peace and Light! Rita



No comments:

Post a Comment