Meniere's– "As The World Spins"

I was looking at the posts on Facebook this morning and one of my contacts posted that she would accomplish all on her To Do list today, unless someone threw her a curve ball.  I replied that my life is nothing but curve balls and change ups.   Those who know me, know my love for baseball.  Those who have known me for any length of time know that I used to play center-left field on a softball team.  This post this morning really struck me.  Since I have been one of the “lucky” ones to have Meniere’s Disease, I have always equated it with roller coasters (I really hate roller coasters).  Today I thought for a moment and this was quite a chore since I woke up with my head and ears still driving me crazy.

Since November 2004, I have been on a wild ride.  I was invaded by a deceitful and utterly spiteful dragon.  Last week I was on the phone with the attorney’s office as my advocate helped me fill out the forms for me to get SSDI.  A lot of the questions related to how my life has changed since the invasion.  As I tried to focus (hard to do since I hadn’t eaten and my ears were going nuts) and answer the questions the best I could, I knew my life has changed, but saying it to someone else to make it official for the records just made it even more real.  Chronic illnesses have a way of changing everything about your life and make things even more difficult.  From walking to brushing my teeth, everything has changed.  I used to be able to walk, chew gum, juggle and carry a conversation at the same time.  I can no longer chew gum and have to stop walking to really carry a conversation.  Juggling, well I struggle just juggling day-to-day living.

Early November 2004, I was beaned in the head by a fastball called Galar Meniere’s.  Now everyday I dodge wild balls while trying to get even a base hit off of the curve balls and change ups that are thrown at me by this dragon.  I still look at it as a roller coaster ride, but the day in and day out of this is kind of like a baseball game.  So far he is winning, but I will play the game through and perhaps one day there will be a home run for all of us when they announce that they can finally answer all the questions that have been around since Prosper Meniere first began researching this disease in the mid 1800’s after it had been plaguing people since at least the 13th century.

Anyone with a chronic illness or close to someone with a chronic illness is all too familiar with the feeling of being helpless.  I feel that way so often I sometimes think I don’t have any other feeling inside me.  Last night I was in Second Life® and chatting with a friend who also has Meniere’s Disease.  To start, Second Life® is a virtual reality world on-line where I got my life back after the dragon of Meniere’s invaded.  I was able to use my avatar to do things that I could no longer do in Real Life.  You can check out my Second Life® blog for more about that world.  The gentleman I was chatting with was experiencing issues due to Meniere’s and was also expressing some frustration regarding his girlfriend’s difficulty understanding what he goes through; but she tries her best to be as supportive as possible.  I recommended he read this blog and also check out a DVD put together by another person with Meniere’s to help loved ones and those new to the illness to better understand.

The thoughts for this blog post have been forming for a while, then last night they were coming closer to the surface.  This morning I had a bit of a FaceBook e-mail exchange with another friend and helping to educate her about Meniere’s.  Again, as I was confidently typing my responses to her I couldn’t help but feel so utterly and completely helpless inside.  Sometimes I have to step back and look at myself.  I have the ability to display to the world the most confidence and surety while inside I am falling apart at the seams.  Where do the helpless go to get help and support?  What can we do to sure up the rupturing dams within?

There are some forums on-line and for some of the lucky there are local support groups you can attend in your area.  I have been part of these forums, but there are no local support groups to attend.  I have been approached several times to start one in this area.  However, giving how I feel and knowing it would be common, I believe it would be difficult as we don’t always feel like sitting in a room with others trying to be supportive and therefore we opt to just stay safe and comfortable on our couches and beds.  Sometimes we are supported by spouses, children, parents and others who are there or come over to help out.  I survive on my own.  I have been trying to be supportive of a few others with Meniere’s who need a shoulder and an ear (not that I have much left in the way of ears **insert chuckle here**).    I am glad that I can be here the best I can for anyone who needs me.  Just ask.  If I don’t have the answers I will try to find them or direct to the answers the best I can.

Let me go back to something I mentioned earlier.  Danny Pancy is a gentleman who has Meniere’s Disease.  He is also a photographer.  He put together a 20 minuted DVD to help others understand what we with Meniere’s go through.  The only audio is white noise since we have tinnitus in our ears 24/7.  Mr. Pancy has used his talents as a photographer and the wonderful technology available to distort photos to help display the way we view things.  I have shared this DVD with others so they can better understand.  It helps them feel a little less helpless.  Check out Mr. Pancy’s DVD on his website http://www.shutterfreaks.com/Pancy-Menieres/contact.htm.

For those who have Meniere’s we know there is really know way to feel less helpless when we are in bouts.  For others, those who know us and care about us, staying away is not the way to help us or you feel less helpless.  I know, too well, intimacy with loneliness.  This adds to my stress, but I keep going on knowing it will always be this way for me.  But I plead with others to reach out to those you know with Meniere’s and educate yourself, not for the purpose of trying to ‘fix’ them, but for the sheer purpose of trying to better understand.  Sites like http://www.menieres.org/ and http://www.vestibular.org/ are great sources to start with.  We just want to feel normal and feel like those who cared about us before the dragon invaded are still there for us and still care.  Don’t be afraid just because we can’t do the things we used to be able to do.  There are still other things we can do, like sitting and chatting about life and things in general.  If you treat us differently, especially by disappearing, then to you we become the disease.  Show us that we are still human beings worthy of your time and your friendship.  The helpless feelings may never totally disappear, but they can be diminished in all of us.

I once had a writer friend of mine tease me about my ancestral heritage.  I call myself a J.I.G.  I am part Jewish, part Irish and part German.  He said the German in me wants to fight all the time, the Irish wants to drink it over first and the Jew just feels guilty about the whole thing.  Since I have been diagnosed with Meniere’s disease, he and many of those I have shared this with tell me to hang tight to the German side and fight.  I am done fighting.  Due to the medication I take, drinking is out of the question (though I really wish I could just drink it away).  I will, however, feel guilty for the duration of this illness.  Since there is no cure, I will feel guilty the rest of my life.  The guilt is what I feel for being a burden on anyone.  Whether it is trying to talk about it all the time or having to get someone to fill in for me at the last minute because I cannot tolerate the pain or off-balance that comes my way.

I am constantly getting comments from people, usually when I make a post about the pain I am in on Facebook/Twitter, saying I am in their thoughts and prayers.  Generally speaking there is nothing wrong with this.  People think that it helps to bring comfort to those who are ill or in pain.  For some perhaps.  I, however, am over it.  I started spinning again last week.  I haven’t been to the doctor since September due to no income and no insurance.  I scraped the money together and went since I knew something was wrong.  I was scared, nay, terrified.  I had to drive in the snow (since the first snow I drove in was a blizzard, I am always scared driving in snow.  That is coupled with the fear I have driving period since having a vestibular condition) and was severely off balance.  The pain was also hitting me hard.  There was no one to drive me.  When I IMd a friend to let her know (not that she could really do anything since she is in California) she was telling me to have fun in the snow and kind of missed the point of why I was letting her know.

I was anticipating never returning home from that appointment.  My two doctors and the two nurses could see how scared I was.  I got a few hugs and arm rubs from them in an attempt to reassure me.  They had to repeat the procedure to re-insert another grommet into my right ear.  Unless you have had this procedure done, I cannot explain how it feels.  But since I usually scream for the duration, that should be some indication to you. It is during this that I really realize how alone I am.

It is nice to tell someone you are thinking and/or praying for them, even if you are not.  But during these times, it would be really nice to have something or someone other then my stuffed teddy bears to hug and have hold me to reassure me that it will be all right.  Each time I go through this, whether the weather related issues or needing to have the procedure repeated, it strips away more of me.  I have no fight left. I have no strength left to even thing about fighting.  I have come to the conclusion that it takes people really being there for you (not just in word or thought) to help you replenish your will to fight and your faith and belief that what you are fighting can be conquered.  Galar will defeat the damsel in the rewrite of my short story The Damsel And The Dragon.  Meniere’s has won the war.

I chose this name for my blog (well, it was one of my brainstorms that Colette really liked and we went with it) because anyone who has or knows someone who has Meniere’s Disease knows intimately well that your world is like a spinning top.

I wrote a poem and an essay a couple years ago about my spinning world. When attending amusement parks, carnivals and fairs I always wanted to get on the rides that would spin. I loved the carousel and the TN Twister. If it spun I would ride it. I would be caught quite often, in spare moments, spinning around in my office chair at work. My favorite holiday game is Dreidels. I always liked to watch them spin around. Then one fateful day in the autumn of 2004 I started to spin.

Seeing the world spinning around when you are not on an amusement park ride nor intoxicated can be quite scary. Making things worse is the hearing loss and constant tinnitus that all but drives you mad. You sit and wonder what you have done wrong or could have done differently to prevent this monster from invading your life. Then there are the moments that you contemplate doing as van Gogh and cutting off the offensive anatomy realizing that you will no longer have ears to hold up your glasses and you let the feeling pass.

What are your thoughts and feelings? How do you cope? What is it that keeps you from going utterly and completely mad?