Meniere's– "As The World Spins"

Okay, it’s time to discuss the huge elephant in the room.  Well, in my case, it is a dragon named Galar.  January 6, 2011, I posted A Good Day. This was a blog post giving you (anyone who does not have Meniere’s) a way to understand what I go through on a good day in this battle I fight.  I once again, urge you to read this post and have a better understanding of how things are for me on those good days.

Now, to discuss the not-so-good and the bad days I have.

Since adding the new trigger of weather in 2009, I have many not-so-good days.  It is just a factor living in East Tennessee.   I know, it could be worse, I could live in the UK.  Having many friends over there, I know they have lots of rain. 

If I wake up with what I call “waterbed effect”, it is a not-so-good day.  What this means is I wake up feeling like I am on a waterbed.  Not that the bed is wet (that is a post for another blog), but the slight motion of being on a waterbed when I don’t have one.  With this effect, I stagger out of bed much more off balanced than I usually am.  I will only drive feeling this way when I absolutely have to and if I do have to go anywhere, I have to be able to remain in the car or seated as much as possible.  During this time, I am much more susceptible to having drop attacks and this is not a desirable possibility. 

In the last couple years since I have really been more diligent in tracking these symptoms via an app on my iPod called My Pain Diary: Chronic Pain Management, I have found that I have these not-so-good days more in the days leading up to a full bout.

With the rain, I also have physical pain in my ears.  The pain isn’t intense, but more of a dull, burning ache.  What makes it really bad is that it is in both ears simultaneously and continuously.  This, after a few hours, causes a headache to set in.  When it gets to where I am ready to scream and cut my ears off, I take some Tylenol and grab the heating pad.  I bought me a microwavable heating pad that is aromatherapy as well and meant to fit around the neck.  This allows me to lay down with it and apply to both ears at the same time.

From not-so-good we travel deeper to the bad days.  If I wake up with what I call “lake effect”, I know I will be vertigo by the end of the day.  Lake effect is when I wake up feeling like I am on a rubber floatation device out in the middle of the lake.  Some people, when I say I will be vertigo by the end of the day usually snap back that I need to be more positive.  This is NOT me being negative.  It is me having lived with this dragon since November 2004.

Unless I have an obligation that I have to tend to, I usually get my cane, take my medication and go back to bed.   I do not drive or go out of the apartment at all when I am like this, unless someone is escorting me to the doctor (rare).  When I am in a bout, I am vertigo for two days.  During this time, I sleep.  My doctor has me on a psychotropic drug to help with the vertigo and I take it with a shot-glass of Pedialyte. 

The Pedialyte helps with the nausea.  I have learned to suppress the vomiting as I am the only one who would clean it up and I am in no condition to clean up vomit when I am vertigo.  Another trick I have picked up during this time is to get through my apartment without opening my eyes.  Most will tell you to open your eyes when you are vertigo.  For me, if I open my eyes, I will vomit.  I keep them closed and move about at an extremely slow pace.  During this time all I consume is the medication and Pedialyte.  I go from my bed, to the kitchen to the bathroom and back to bed all without opening my eyes.  This is my life for two days.

If you have ever had vertigo, imagine having it for two days while taking a psychotropic drug to help you with it.  (Side note – I don’t know how this drug is supposed to help the vertigo, all I do know is it knocks me out so I can endure the two days) 

Following these two grueling days I am very vulnerable for several more days.  First, it takes at least 12 hours of laying on the couch to get rid of the heavy fog which is a side effect of the drug and a residual effect of the vertigo.  Also, I am even more susceptible physically to drop attacks as I am physically worn out.  With the emotional toll it takes on me I am extremely vulnerable as well in that area.  This doesn’t mean you need to “walk on eggshells” around me, it just means you need to know that I am on an emotional roller coaster for several days.

  April of last year, I had three bouts back-to-back in one week.  This left me completely beaten up.  As a result of this, I contemplated ending the reign of Galar by destroying his prey, me.  I spent a week in the psych-ward at the hospital as a result of this.  It took this for my psychologist to finally believe me when I told him I was not depressed.  I was never diagnosed with depression.  I was diagnosed with Meniere’s w/psychosis.  There are depressed thoughts and idealizations, but not depression.

As an isolationist, I try to keep my contact with people to a minimum during the time immediately following a bout.  I know I am prone to taking things the wrong way and don’t want to make any comments that could cause ill feelings for the other person.  It is during this time that little things really mean the most to me (they always mean a lot, though).   An e-mail, an IM or a text that might simply say “hello” or “I’m thinking about you” go a long way in helping me get through this ugly period after a bout. 

To conclude, if I disappear for a while or seem even quieter than usual, it is nothing to do with you (well, probably not you), but instead, it is me trying to get back to a normal parameter following another bout with this hideous dragon.  Kind of like how you need to take time to get your family and household back in order following a tiresome visit by kinfolk you are kind of glad you don’t see very often. 

This is the short story I wrote about why I am in Second Life.  Galar is Gaelic for Disease.  Happy snappies were staged in Second Life to add to the story.  The story was published in Life To Life Magazine Summer 2009.

The Damsel Fights Back

The Damsel And The Dragon

On the heels of the Queen’s death and the conjoinment of Prince CuChulainn, Princess Emer and Duchess Ryanne, who were now ruling over of the kingdom, came an influx of new faces migrating to the Islands that are called Lost and blending into the fabric of the kingdom deeply enriching the Flanagan Clan.  One of these fresh faces belonged to a comely damsel.  She walked into Flanagan’s Pub one cold winter evening to attend a festive gathering and to satisfy her curiosity about the Clan and other people in the kingdom.

Putting on a name tag that simply read “Parker” she returned greetings with all the confidence and stability of a newborn kitten.  Parker was careful not to make eye contact with any one, but remained on the sidelines watching in wonder and awe.  The crowd was dense and she knew no one in the room.  Slowly she meandered around the perimeter of the amazing ornately plain room.  She studied with care the textures and moldings that would make this ballroom come alive even if no one was present.

Stepping through a side door the damsel had her breath taken away.  She was in the original part of the pub and found herself reaching out and touching the smallest details with tender fingertips.  Studying the richness of every crease and crevice, Parker lost all track of time.  She allowed the music wafting in from the outer ballroom to lull her further into a mesmerizing trance that propelled her into the speculation of the history of the fine craftsmanship enveloping her.  While her fingers ran along the ivory keys of the piano she did not realize her solitude had ended.

As she caressed the handiwork all around her, Parker was unaware of eyes studying her.  She jumped at the greeting bestowed from behind.  Turning toward the door, Parker was face-to-face with Prince CuChulainn and returned his greeting apologizing if she had entered a room not open to the public.  The prince assured her that all rooms were opened for exploration.  He went on to apologize for interrupting her reverie but explained that he was not given to crowds and much preferred smaller gatherings.

The pair chatted for a while then the prince went into a detailed history of the pub.  Lovingly he explained how the queen had desired such a place for the Clan and all those in the kingdom to come together.  Parker drank in every historical notation accounting the construction and dedication of the pub, its ballrooms and gardens.  She did not want to miss one iota.  The more the prince talked the deeper the damsel drifted into the manifestations that are the Flanagan Clan.  In the same reality the deeper the prince took Parker’s thoughts into his recitations, the further she went from the nightmare in her own world.

One cold winter night in the warmth of a cozy pub, a friendship was formed between two unlikely souls.  Parker and the prince would spend hours together talking and sharing their thoughts and their joys.  Enthusiastically the pair explored various parts of the kingdom and enjoyed the richness and beauty therein.  But, always close in the damsel’s conscience was the battle looming that she fought every day.  Wanting to enjoy every blissful moment, the damsel knew she could not reveal to anyone in the kingdom (least of all the prince) that a dragon had come to claim her and threw her into a vicious battle that she fought alone in her own world.

Years before, without warning, Galar entered the damsel’s life.  At first she did not think the dragon powerful and venomous.  Time proved her wrong.  However, knowing his strength would not have given Parker any foothold to banish him from her life for good.  In the beginning Parker did not know what she was fighting and knew even less about how to fight dragons.  Instead of fighting, the fair damsel gave up and ran away looking to find replacements for all that Galar had stolen from her.  In her apparent flight from reality, Parker found herself continually on the Islands that are called Lost and enjoying the companionship of a prince.

Day after day the sweet damsel entered what she called her fairytale life.  It was there that she could be herself again, be whole.  In her fairytale life she could run and dance and even spread her arms to fly.  There, Parker could control her own life and not be concerned with Galar looming behind rocks or lurking in caves waiting for a chance to spring, talons extended and deliver more crippling blows to her already fragile body.

In the fairytale land of the Islands that are called Lost, Galar dared not enter, but the moment Parker would step out of the fantasy, away from the beauty of the land and the companionship of her princely friend, Galar was waiting.  His hot breath steaming through flared nostrils would cause her head to spin.  Galar is a sneaky dragon and does not fight fair.  He has a way of leaving his prey alone and just watching, waiting for just the moment that the intended victim would feel confident that he was finally gone and would plague them no more.  Then at just the perfect moment Galar would extend his talons and use the full force of his mighty arm to knock the victim off their feet and leave the poor soul laying there writhing in pain.

One day, in the early spring of friendships blossom, a messenger arrived while Parker and CuChulainn were exploring gardens on the far side of the kingdom.  Parker watched helplessly as news delivered to the prince that a knight, who was closer to him than a brother, had been murdered by a dragon.  It was speculated that this dragon was of the same nest as the one which claimed the queen and another knight who was a boyhood friend of the prince.  In his grief the prince ran off for the palace leaving the damsel to stand shivering with worry.

Parker return to her home and watched the day the prince rode off on his steed to hunt down the dragon which dared to enter the kingdom and take the life of one so loyal as Sir Jeff.  Parker waved as CuChulainn rode by, but still buried in his grief the prince did not see his friend.  In her heart of hearts, Parker knew she would never again spend time with the one who had given her many hours of relief from Galar.  Demurely patting away the tears rolling down her cheeks with her lace handkerchief, she slowly turned and walked back into her home.  Her reality.  Her own personal battleground.

Deep concern for the prince allowed Galar another entrance into Parker’s world.  She was already weakened from previous battles with her fierce enemy.  Now, her heart broken, Galar wasted no time hurling his fiery darts in just the right places to send Parker crumbling to the ground.  There was no one there to catch Parker as she fell and no one to help her fight this dragon she did not understand.  Now, she no longer had any one to help her escape his relentless torment even for the briefest of time.

One brisk autumn day, lying in a sea of her own tears, Parker found herself curled up like a kitten shivering in pain and fear.  Slowly, she pulled herself up.  For the moment Galar did not appear to be around.  Tattered and scarred, the once fair damsel knew in fractured clarity that she needed to fight back.  After bathing, Parker put on fresh clothes and went in search of a friend.  Stepping back into her fairytale world she reacquainted herself with others she had enjoyed the company of in time long since reverted to memory.  Spending time in her fairytale land with acquaintances she felt comfort that she hadn’t felt since her time with the prince.  Once again, Parker had found an escape for brief interludes from Galar’s ferocious attacks.

Slowly, the damsel regained the resilience she knew before Galar entered her life and wreaked havoc.  As she felt surer of her footing she also found herself trusting.  She began to share information of her battles with those who had taken her in as family and friend.  Neither the Flanagan Clan nor the royals had fully accepted her, save the prince alone.  She was a commoner and not a clansman therefore, they could never have fully accepted her.  However, in a quaint little village known as the Bee Hive Township, there were those who offered hands to hold and arms to lean on whenever Parker was weary from her battles’ rage.

Seven souls welcomed Parker into their world and in return she began to trust their strength and learned to use it during the ensuing skirmishes with Galar.  Even the times that Galar would have the upper hand, Parker knew she was not alone.  There were seven angels who were each in their own way, there to catch her or to help her tend her wounds.  Over time, in the fortitude of a few, Parker found herself winning the battles more and more.  Galar turned his attention from the damsel with the help of a gentle wizard who truly knew how to fend him off.

Parker would return to the Islands that are called Lost from time to time and continued to be concerned for the prince.  However, CuChulainn faced his own dragon and the sweet damsel held vigil against hers.  The season’s changed as they always do, but Parker could now stand in both her fairytale world and her real world with trust in her heart with the weapons of friendship and love to wield whenever Galar came to prey.  Deep within the damsel knew this dragon would never go away.  But then again, neither will friendships found so true.

June 19, 2009

© DL Bach

**DISCLAIMER – The characters in this story are people in Second Life.  I am not, in any way, attempting to mock or do harm to any deities.  The people chose their own names and I just wrote my story.

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?