Meniere's– "As The World Spins"

In November 2004, I first presented with symptoms that ten months later would be diagnosed as Meniere’s Disease.  As the illness progressed and I became unable to do the things I used to enjoy such as dancing, hiking and swimming, I found myself slipping away.  After my knee injury over a decade ago, I went through a deep depression and knew I didn’t not want to go back there.  Since I could no longer do the things I used to do to relieve stress, I knew it was very possible for me to slip into another depression.  I was not going to allow this to happen again.

In February 2007, I was at home watching the Law & Order: SVU episode where they were looking for a person who was involved in a virtual reality world called “Another Universe”.  This gave me an idea.  I found that Another Universe is fictitious, however there is another virtual reality world that was alive and well called Second Life (later in 2007 Second Life (SL) would be depicted on CSI).  I had my laptop at work and created an avatar and entered the world.  Due to not having internet at home at the time and issues with my laptop I did not make it off Orientation Island.  I put SL aside and went on with my life.  In the midst of Meniere’s I dealt with the death of my father and a treatment that took away my immune system and left me fighting colds and infections.

October 2007 I watched the CSI episode involving SL and was reminded of my failed attempt at entering that world.  I couldn’t recall my avatar’s name and password.  So I created a new avatar and called her Parker Janick (Parky).  I made it into SL this time and began exploring.  I would spend my free time at work in SL (I worked nights at a television station and was all alone there)  During my exploration I was clicking things and not knowing what I was doing things would happen.  One time I clicked something and received a blue box and clicked yes.  I then went to change a tape and when I returned, my avatar was dancing.  I sat there and cried for about five minutes.  I could no longer dance in Real Life (RL), but I could dance in SL.

I continued to explore and ultimately got internet at home where I could explore more.  I made friends, learned how to swim and do many other things in SL.  I finally found my life again.  Along my journey I began meeting other people with chronic illness and issues.  There are those who are bed ridden and others who are in wheelchairs.  I have even met three others in SL who have Meniere’s Disease.  It helped at one point when I begin attending a support group in SL for people with chronic illnesses and/or their caretakers.  One thing was certain, we all came into SL for the same reason, to do things that we could no longer do in RL.

I can’t do much in RL that I used to do, but in SL I am thriving.  I own a Celtic Pub where everyone is welcome (as long as they obey the rules) and I host twice a week at a friends jazz and blues club.  I am involved with writing groups and even attend a Writer’s Circle once a week where I read some of my own work.  I recently submitted a poem for a contest in SL and won first place.  I even wrote a short story called The Damsel And The Dragon about why I am in SL and it was published in a SL magazine.

I highly recommend SL to those with Meniere’s Disease or any chronic illness that keeps you from doing the things you love to do.  You can do those things again by using an avatar in SL.  Use this link http://secondlife.com/.  to find your life again, even if it is virtual.  I would still much rather be dancing, hiking and swimming in RL, but for now I will do these things in SL and keep my mind active while meeting new people from around the world and making friends (gaining contacts) in the process.  Don’t let your illness deprive you of your life.

A shot I staged to go with my short story The Damsel And The Dragon

Me dancing with some friends at my pub

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.

For a few days my ears had been crawling with a bit of a dull ache.  It was manageable, but I knew the barometric pressure was changing.  I woke up yesterday morning and felt like I was laying on one of those rubber floats out on the lake.  I didn’t need to look out the window.  I just crawled to the couch and tried to be a civilized human being.  I didn’t last long in this state.  But while I was semi upright, I managed to pen my daily poem.  It follows.  The title is Galar which means disease in Gaelic.  I wanted the Gaelic translation for Meniere’s Disease and was able to get it and just used Galar to name my dragon in my short story The Damsel And The Dragon.  The dragon in the story is Meniere’s Disease and of course, I am the damsel.  I now use the term Galar when I am feeling the talons of this brutal beast.  So yesterday, it became the title of this poem.  I would say enjoy, but considering the topic…

Galar

The dragon is back
my ears to claim
his attack is brutal
driving me insane

my ears, they crawl
they burn and ache
I want it to end
for goodness sake

I cannot understand
how a God, so kind
can cause this ill
I’m losing my mind

please, someone
take sword in hand
slay Galar soon
erase him from this land

we are many
Galar seeks out
salt, allergies, weather
can begin our bout

the scientists only
through tests and research
can slay Galar,
remove him from his perch.

PLEASE HELP SOON!!!!

April 8, 2010

© DL Bach

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.

A year ago I had grommets inserted into my eardrums for the purpose of being able to use a Miniette device.  However, I found it was the grommets and not the Miniette that put me into the “well controlled” category.  Before this, my known triggers were stress and being a girl.  the grommets were supposed to last about nine months.  This should have taken me to mid July.  However, as my neuro-otologist pointed out, I am not normal and have trouble following standards.

The third week of June, just one week before my scheduled appointment with my doctor, I decided to relax in bed for a while before getting up to enjoy the Shabbat.  I rolled over on my left side and tucked the pillow up under my neck.  At this point I felt a ‘crunch, crackle and pop’ in my left ear.  I lay perfectly still for a bit, afraid to move, not knowing what was happening.  When I finally sat up my world was spinning.  I had not felt this way since mid October.  I made my way to the couch and pretty much remained there until Monday when I could call the doctor.

Anyone who has Meniere’s or is close to someone with Meniere’s, knows how unpredictable this monster is.  by the time I got in for my Friday appointment, we had determined that I now have a third trigger ~ WEATHER.  Now I fully understand those who refer to themselves as “walking barometers”.  We got new grommets inserted and this time they should last two years.

While I didn’t have issues with the original triggers after the grommets were inserted, I still have minor issues with the weather changes.  It seems that when the weather changes now I get a dull ache deep in my ears and experience some fluttering.  In the beginning of September I was lucky enough to get H1N1.  This proved to have a bad effect on my ears.  I had lots of aching and it seemed my hearing worsened.  When the illness cleared I noticed that I now have constant tinnitus in both my ears instead of just the left ear.  My doctor sternly advised that I not get either versions of the flu again for the remainder of the season. (As if…)

Earlier this week I was getting over what I initially thought was a second round of the flu, but  thankfully, turned out to be Acute Bronchitis instead.  My left ear began doing weird things so I put in a call to my otos nurse.  When she returned my call, we talked.  She reminded me about the weather and advised I take it easy and keep an eye on things and call back if they don’t improve or get worse.  you know, the usual blah, blah, blah.

Everyday we have ups and downs.  Right now it appears that I am on more of a Merry-Go-Round.  For four years I felt as if I was on a very wild roller-coaster.  I HATE roller-coasters, so I am glad I am no longer on that part of this ride.  I will accept being on a Merry-Go-Round with Meniere’s although I wish I could be on a real one instead.  I will continue to research (for now with a clearer head) and write my book while educating anyone and everyone I can about this dragon that invaded my life five years ago.  one day, he will be totally defeated.  Until then, my sword stands ready to fight whenever he comes to prey.