I’ve noticed lately that I’ve had a very bad attitude about my life in general. I’m not usually like that so I was trying to think about what may have changed.
I have been dealing with an unusually long Meniere’s attack. Well, not an attack per se, I’m not having constant vertigo and throwing up, I don’t really know what to call it. I think you would say I’m in an Acute mode. My hearing is down, the full feeling and tinnitus is up, and I feel like at any minute I might start having vertigo. I’m also having disequilibrium all the time. You know that feeling where if you turn your head too fast, or look down, the world moves a little all on its own, but it doesn’t keep moving like it does when you have full-blown rotational vertigo.
Yeah, that’s been happening, but it’s happened before. What’s the biggest difference this time?
I have hope that it may end for good. And I’m very, very scared about it.
When I had the endolymphatic “shunt” surgery, I had hope that the vertigo would end. At least the vertigo being caused by my right ear. But I knew I would still have to deal with a lot of other issues, and I also knew that often this surgery doesn’t last forever. So, yes, hope, but not like this.
This time I think I may have a “cure”. And as much as I’m trying not to believe, not to get my hopes up, it’s just not working. Then I get so scared. What if it doesn’t work? What if nothing changes? Yes, I will have the opportunity to have the “shunt” surgery on my left ear, but it won’t be the same. When I go through this procedure on November 24th, I’m expecting some kind of a miracle. I’m not expecting to get all of my hearing back, I do expect to get some of it back, and I expect the loss the stabilize. I’m not sure what I expect about the vertigo, but I have such hope. And I half expect my migraines to be a thing of the past.
If this doesn’t happen I’m afraid I’m going to lose it. I’m really afraid I will drop into a deep depression and hate the world for a while. Already, due to the fear from all of this, I find myself mad a lot. I have been re-evaluating my life and it has come up lacking. So if this miracle doesn’t happen, how will I feel then?
I had accepted that I had Meniere’s Disease. I accepted that it was not curable, that no one knew the cause, and I was disabled because of it. Don’t get me wrong, I never stopped looking for answers. I kept looking for anything that would change this, but I accepted that it may not change.
Now, I have hope. And I’m afraid, it’s false hope.
I’m simply not too sure if I’m strong enough for the let down.
I need to remember, if this causes me to fall down, I simply have to get up again.
Even if this doesn’t work for me, I hope it will at least give the researchers more information where they will someday be able to help more people like me.
Let’s face it Meniere’s is a rare disease. It is listed in the National Organization for Rare Disorders. Rare diseases do not get the big research bucks. There isn’t enough money to be made off of them. Yes, it seems like there is a lot of research going on with Meniere’s right now, but the prosthesis they are making are not just for people with Meniere’s, it will be used to help people with countless other balance disorders. Even the research that Dr. Gray is performing, it didn’t start as a search for a cause for Meniere’s. She is finding out that an imbalance in Cerebral Spinal Fluid is the cause for a lot of problems.
I’m extremely grateful for this research, and I hope it will find a way to help more and more people with Meniere’s. I was just having a little reality check there.
So, if things don’t get better after my procedure I may need a little hand holding, and possibly a swift kick in the pants to tell me to get up and dust myself off, I can make it anyway.
Thanks for listening.