Meniere's– "As The World Spins"

Prelude To Tomorrow

In the delicate whisper of essence, enveloped by calming silence, it is easy to see; to hear; to feel.

Rising early, my mind swirls with anticipation.  Excitedly, I wash and slip into my favorite long-sleeved tee and khaki hiking shorts.  My fingers are barely contained as they comb my curly, red locks into a ponytail and place my Mickey Mouse baseball cap securely on my head.  Lacing up my hiking boots sends near orgasmic sensations dancing through my body.  Grabbing my pack, which was filled last night, I jump in the car and make my way to Frozen Head State Park in the Cumberland Mountains of East Tennessee.

The parking lot at the foot of the trail to Chimney Top is half full already and it is only eight in the morning.  It seems most folks come to Frozen Head to hike that trail.  Some accounts suggest it is the toughest trail in the park and lays further claim that it is steep, up-hill both coming and going.  I considered taking that trail on my first trip to Frozen Head.  However, I quickly changed my mind when I was nearly run over by a group of children running on the trail.  The scene at the top may boast beauty, but the well-used trail just wasn’t for me.

I find a parking space and step into the sunshine.  Already, every one of my senses are engaging, almost the way a dog perks up upon hearing a noise that could be threatening.  Even though I have not planned a strenuous trail, I stretch a bit as I obtain my pack from the backseat, slip it onto my shoulders and make my way to the main trail’s head at Shelter C.

 While I am not going to Chimney Top, I must begin my journey at the same spot as everyone else this morning.  After the others turn off the main trail to make their pilgrimage up to the Fire Watch Tower, I continue on and allow myself to sink deeper into the purpose of my hike today.  There are other trails with more beauty and still others far more challenging, but today I need more.  As this may be the last time I will ever experience my favorite hiking spot I need to go to what I believe to be the very heart and soul of Frozen Head.

Feeling every rock through my boots and thick socks is exhilarating instead of uncomfortable.  I purposely keep my eyes on the trail in front of me and not casually look around, as I do not desire to climax too soon.  Small rocks patiently embedded in various places in the dirt trail compliment the tree roots and dusting of fallen leaves.  My memory sees clearly the wild flowers dispersed amongst the trees which ascend upward gradually filling in the canopy overhead which welcomes and beckons me deeper into a wonderland without equal.

Tempted to move quickly to my spot, I pause briefly to calm my heartbeat and take a deep breath.  The crisp, early October breeze meets my moist skin and the sensation melds with the clean, fresh aromas filling the air around me.  I want to move methodically, yet gently in order to savor every delicious moment; every gratifying stride as my body synchronizes with this magical place.

 As I ascend and descend the ever-narrowing path, my mind wanders to the previous months, which have left me feeling barren and stripped of everything I thought I had a firm grasp of.  Here is where I will be able to make sense of things.  In this haven I will see the words that have been eluding me.

Eleven months ago I fought my first battle of a war that my doctor advised me last month I would be fighting the rest of my life.  The shock of knowing I will no longer be able to do most of the things I love has left me with writer’s block.  As a writer and a poet, this is not a good thing.  Hiking in the mountains always seems to stimulate the tornadoes in my mind and adds fuel for inspiration.  This trip will fix things and set them to right.

My pulse begins to dance in my veins as I glimpse the mountain stream through the trees.  Knowing the terrain is a bit tricky getting to the stream from here, I continue to move cautiously.  Each yard brings me closer; closer to excitation; closer to uncompromised release.  I stop and gaze in amazement as the trees drawl open their curtains; almost as if it is the first time I am seeing this spot.  I continue on and make my way down the nature-made steps to the stream.

The stream has waned as most streams and lakes do in East Tennessee this time of year.  I traverse to the center where there is a large, rather flat rock where I sit and enjoy this sanctuary as I have many times before.  Beams of sunlight make their way through my thinning baldachin, falling upon my face providing comfort and warmth.  I gently remove my pack from my quivering shoulders, but lay it aside and pull my knees to my chest and just sit.

My breathing synchronizes with the wafts of air encircling me.  I feel as my pulse harmonizes with the heartbeat of the stream and the insects around me.  Becoming one within the crux of existence elevates the soul to levels not understood by anyone who has never reached this zenith. Calming silence here, inside the delicate whisper of essence, envelops and its true clarity allows one to see, to hear, and to feel in shades and colors that mystify the rainbow.

After what seems a moment and yet a lifetime, I rouse from blissful relaxation.  My pack is still lying next to me, unopened.  Today, I did not need it.  Today is not the day to attempt to put pen to parchment and record what is in my heart.  With bittersweet resolve, I return to full comprehension of my place and time.  Replacing my pack once again to my shoulders, I notice my boots have partially dried.  I progress slowly, rising from my own personal Gibraltar and make my way to complete the Interpretive Trail Loop.

The trail is somber and shares my melancholy.  The intermittent falling leaves mimic the tears upon my cheeks, except in vivid autumn colors, which will peak in a couple of weeks without me.    I don’t know why leaving always takes longer than arriving, but my departure is twice as long today.  Hiking boots, now made of cement, drag along almost bidding me to stay and allow my roots to take hold.

Emerging from my refuge a tsunami of fear washes over me.  Arriving at my car, I stop.  I kept telling myself with each step back to the world I must endure that I could not look back.  If I look back, it will be even more difficult to leave.  Still, I stop short of the front of my car.  Slowly, I turn.  I look back.  I cannot help but look back and capture a mental snapshot of what was and can never be again.

People leave places for many reasons.   Some leave places they despise where they could never find happiness, let alone true peace.  Others are ripped from the arms of tantric connection by incidents they neither understand nor have any control over.  The emptiness and absolute sequestration can never be explained; it can never be replaced.  Life will continue.  People will live, love and laugh.  For me to know the depth of these will only be through the tear-streaked memories more painful than death.

August 25, 2011

© DL Bach

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. 

Thursday, a friend in Second Life asked me what bothers me the most that people say to me when I am feeling the way I feel when I am having not-so-good and close to bad days (can’t get on-line to chat when I am having bad days, the vertigo just doesn’t cooperate).  As my head was nuts, I didn’t see her question and so she thought she offended me with it.  I scrolled back, read it and then apologized for not seeing it.

This question gave me pause.  I could have burst out with all kinds of things, but held my tongue.  So many people mean well and just say what they think they should.  However, just as helpless as others feel, those of us with Meniere’s (or any chronic illness for that matter) feels just as if not more helpless.  For me, I think it is those who just sputter out “feel better soon” or “I’m praying for you”.  I know these comments give some sort of peace to the speaker, but not to me.  It has nothing to do with who is speaking.  In general, I feel a warmth knowing that someone cares enough to attempt to help me feel better.  It is my head knows that I will feel this way at some level until someone finds a cure for this (thus far) incurable disease.

Years ago, before she passed away, I had an elderly neighbor, Ms. Jewel.  She was so sweet.  She wanted me to let her know when I was in a bout and one time she was chastising me for not telling her I was laying up stairs for two days with vertigo.  I finally aid. “What could you have done, but watch me sleep” as that is all I can do when I am vertigo.  I take my medication and it knocks me out, so I sleep.

Not knowing what to do or say, I believe is what causes many people to “leave” when someone gets sick.  There are times that a person may have an illness and require others to be there to tend to various needs.  But so often, when the person who suddenly gets an illness can no longer do the things you used to do with them you can’t figure out how or where you fit into their lives any longer.  This is what has happened to me.  I used to hike, play volleyball and many other things before Meniere’s entered, all those people I did these things with are gone.  Perhaps I can no longer engage in these activities, but I miss the friendship and camaraderie I felt with these people.

If there is someone in your life that has Meniere’s or an illness that is “invisible” and they are unable to do many things, don’t be afraid.  You don’t have to always talk about the illness and while it may be a bit painful to talk about the things you used to do together, it can also help that person.  It can remind them that your friendship is greater than the activity they can no longer engage in.  Call them up, or better yet, go see them.  Just sit and spend time with them talking about anything.  If there is something you see that needs to be done and you know they are unable to do it, volunteer or just do it for them.

Other things to help both of you feel useful instead of helpless, take the person for a drive (if their health permits) and just enjoy some time outside.  Personally, I get tired of not being able to get out and enjoy the out of doors and would love to have someone care enough to take that kind of time to spend with me.  We want to feel like useful members of society.  Anything you can help this person do to accomplish that is a good thing.  This morning I was texting with a friend in another state and she is one of three that I bid “good morning” to every morning (unless Galar is visiting) and this helps me in a small way feel like a useful member of society.

Little things mean everything to those who can no longer do the big things in life.  Even if someone takes the time to bring me something that  I don’t necessarily like, I appreciate it more than words can say because I know they were actually thinking about me and wanted to see me even if it was for just a few moments.

As this is the middle of Chanukah I am taken back seven years.  Chanukah 2004 was the last holiday I fully enjoyed, as I first presented symptoms of Meniere’s the end of October 2004.  While I had hearing loss and constant tinnitus in my left ear, I wasn’t vertigo nor off balance at all.

I am sitting here in my ‘prison cell’ and reading Tweets and Facebook posts with all the holiday greetings.  Since I am a writer, my mind swirls around all of this.  Having Meniere’s, my head spins around all of this. 

This can be a very trying time for those with Meniere’s Disease whether you keep Chanukah, Christmas or Kwanza.  The menu has to change to limit the sodium (this means most people won’t be happy eating bland food to accommodate you) as the majority of holiday treats are laden with salt.  This can be stressful for someone like me as I feel guilty causing such an inconvenience (not that I get any invites to share holiday meals).  The added stress that society piles on making people feel that holidays cannot be experienced unless you give store-bought gifts to EVERYONE you know can also set us back (and I don’t me financially).  Then there is the stress of decorating and the stress of having to go places and see people you aren’t that fond of.

Stress and salt out of the way, lets look at the other triggers.  Allergies (not one of my triggers), with bringing live, cut plants into your home brings in mold and other airborne allergies.  Digging out the supplies stirs up and allows dust to fly about.  This is one trigger I am glad I don’t have.  Weather is another big one right now.  In some areas it is the rainy season, but mostly folks want snow.  I seem to be set off when any weather front comes near.

If you are a friend or family member of someone who battles this wretched dragon, I hope you will truly be filled with the holiday spirit and NOT push this person to participate in everything.  visit with them so they don’t feel forgotten or left out, but understand that while you don’t see anything obvious as wrong, they are still feeling it on the inside and it can be very ugly for them.  Be understanding and know it is the dragon we loath, not y’all.

Right now, many of you (yes, me too) just want to curl up in a corner and wait out the triggers.  You know yourself and how you are affected.  I send good thoughts to you and hope you will take it easy and not push yourself and pay big time later.  Through these holiday highs (and lows) I will be on the couch if you need me.

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 have a lot to get done in the next two weeks so this will probably be the last words I post here within Blogtopia.  Some have said they read my Meniere’s Blog regularly.  Either they missed my Letter Of Resignation, or they just didn’t care.  Since I am an advocate of giving people the benefit of the doubt, I will believe that they just lied to me in saying they read it regularly.

I spent last night in and out of sleep.  When I was out of sleep I was thinking about everything that still has to be done.  I woke up thinking about this post.

There are those who will wonder why I didn’t come to them with all of this.  Well, how could I bring you my tears when you didn’t want to share in my laughter?  In my life I have had one thing in my heart that I have striven to bring forth to the world in my meager words and that is peace through understanding and acceptance.  The world has not listened.  My heart is not to be heard.  The world is not ready to hear what is in my heart, for it would rather hold onto its anger and hatred.

Perhaps in my next life, the world will be ready to hear what is in my heart.  I believe that the intent of the heart follows you into your next life, so perhaps I have been trying to get the world to hear my heart for generations.  Not this life, but hopefully the next.  If you desire to me honor after I am gone, then remember the message of my heart and learn to accept others no matter the differences and understand that everyone is a human being above all else.

True peace will come when people move beyond the fears of what is different and accept everyone as individual human beings without the anger and hatred that continues to bind this world through ignorance.

There are many who believe I am in a depression, including my psychologist.  I am not.  I have been in a depression before and this is not that.  When in the depression I didn’t want to do anything or go anywhere.  This time I would love to go places and do things, but have neither the ability nor the assistance to do those things.

I was in IM with someone a couple weeks ago whom I have only recently made acquaintance with.  I inadvertently mentioned that I will be dying in July.  (My last post in this blog was my letter of resignation from life explaining the July date)  We began discussing this and she too, started questioning in a manner that expressed I was in a depression.  Perhaps I do have some depression due to my circumstances, I think mostly I have this due to two things:  loneliness and just being tired of fighting this dragon.

I was in IM with a 20-something later who was diagnosed with MS last month and has only had symptoms for about two months.  She has her mother waiting for her to come home to Scotland in a few months and will have her admitted to the hospital to begin treatments.  She constantly complains that she can no longer type as well as she used to on her computer.  I suggested  computer-based voice program so all she has to do is speak into the microphone and the words are typed then she can go back and fine-tune the piece.  She whined that that would be even more difficult and just complained about her pain.  She is working on an in depth project that was due to be completed last year well before her symptoms began.  She asked my advice if she should tell the person she has MS and that is why she is having difficulty completing the project.  Every time she hits a wall with anything she asks if she should e-mail the person and tell them she has MS.  I keep telling her not to.  She seems to want to use her illness as an excuse for everything even if the illness isn’t to blame.

This young woman and I were in Blackberry IM again one night and she averred that she hates MS and wants to die.  I gave her advice from one who has been living with a chronic illness for over six years now.  She has a family who cares about her and is trying to help her with this difficult diagnosis.  She has every reason to live especially since they have found this illness and diagnosed it early.  My ears were hurting and all I wanted to do was lay down with my heating pad and try to relieve my own pain.  I excused myself from the conversation after giving her some sound advice to work with her doctors.

Upon laying down with my heating pad I pondered the recent conversation with this young woman and the one I had that morning with the other recent acquaintance.  I do not want to die because I am depressed.  The fact is I do not want to die at all.  Death is the only option I have right now.  I could have a drop attack (DA) as I did yesterday and hit my head or something and die.  Or worse, have a DA while in the shower and most assuredly die.  If this happens then no one would know I was gone for at least a month when I don’t pay my rent.  By that time no one will be able to use any of my organs, nor would my body be viable for research of any kind.  If I plan, however, more people could be helped as a result of my death.

No, it isn’t dark here, I do not want to die.  This is just the best option for me right now.  If there is a cure to come along, or a good treatment then I will accept that and continue.

Following a great deal of consideration and much contemplation I submit this as my letter of resignation.  Effective on the 28th day of July 2011 I will officially be resigning from this life of pain.  I have tried since 2004 to live with this illness, but I just can’t tolerate the pain or any other part of it any more.  Perhaps, if I had had anyone who remotely cared enough to at the very least check on me regularly, I could have tried a little longer.

I established a bucket list of sorts as my new year resolution this past January.  It will go undone as no one seemed to care enough to want to help me when I sent out a plea.  I have been screaming for help for a long time now and no one gets it.  I sit and listen to the ills that everyone else has but when I even attempt to say how I feel I am either turned away or told just to get over and go on.  I know others have their issues and they deserve to have their say and I respect that and let them talk whilst I listen.  I would never take that away from another human being.  I will continue to listen, but never again will I attempt to confide in you or trouble you with how I feel.

When my grandfather and step-grandmother died, so did the last of the love I ever truly received.   My beloved best friend Sissy had dubbed me Miss Independent not long after we became friends.  My greatest strength and my greatest weakness were always one and the same, my independence.  When I have in the past few years made known my needs, they weren’t filled.  I kept writing about it in my blogs and as posts on FaceBook, but no one ever tried to reach out and help ease the pain.  I will say this one last time, LONELINESS KILLS. I find it fascinating that none of the so-called Christians nor Messianic believers I know in this area could reach out to me and yet when I voice my feelings all they can do is preach at me and I am supposed to accept it.  I seem to recall a passage in the scriptures that talks about the Messiah separating the sheep and the goats and the goats question the Messiah when he says they never came to visit him when he was sick or in prison.  “When you have done it to the least of one of these…”

If anyone is actually reading this, you may have questioned the date.  Well I thought it would be fitting to exit this world the same day I entered it.  I am an organ donor and to my belief the only organ that will most assuredly not be able to be used will be my lungs (asthma is a harsh way to go, but the best for helping more people live).  I have my will and living will in tact with all my wishes specified and will have a hard copy of each signed and notarized prior to my departure as I will lay them on the in-take desk at the emergency room when I arrive.

Since I have been nothing more than an afterthought in life, I hope that I will be just as important to everyone in death.  If you feel guilt after I am gone, I hope it is excruciating.  I feel people only experience guilt IF they have something to be guilty for.  Shed no tears for me after I am gone as you did not want to even share laughter with me while I was here.

It has been a very long run, but it is time for the curtain to come down on this joke of a show.  I thank you for the abuse and all the ways you only used me.  I do hope you will not find anyone else to treat this way.  I only wanted peace in the world and for people to just accept each other and not try to shove their own ways and beliefs down other peoples throats.  Perhaps I was undeserving of love because I am substandard in every way, but please love every human being as if they are your closest kin.

**WARNING:  DO NOT READ THIS UNLESS YOU REALLY WANT TO KNOW WHAT A GOOD DAY FOR ME IS LIKE!**

Yes, I put a warning at the beginning of this post.  There are so many people who believe that every person with Meniere’s is the same.  What you are about to read is what it is like for me on a good day.  This could perhaps be a really bad day for someone else you know or a day that others could dream of having as a good day.  Those who have known me since before I got sick expect me to be the same independent, vibrant go-getter that I used to be.  Well, I hope after reading this you will understand why I can’t leave my apartment when it snows or there is ice.

Since last spring I have been fighting to get disability.  It seemed no one wanted to listen to me or take the time to really help me through this struggle.  Even my attorney’s didn’t want to be bothered with finding out what was really going on.  Finally, in the last leg of this race I was able to speak to a supervisor in the attorney’s office and made him listen to what I had to say.  The following is basically what I said to him and have been using ever since.

If you want to know first hand what it is like to experience one of my good days, and keep in mind this is a GOOD day, take your iPod and load it with  the sound of a kazzillion crickets   ATA_Tinnitus_Buzzing_Tone.  Place the ear buds snugly into your ears.  This will diminish your hearing, so make sure they are nice and snug.  Then turn up the volume and leave it on 24/7.  Then drink a six-pack of beer.  Or if you prefer a few shots of tequila or a couple glasses of wine.  Drink as much and whatever it takes for you to become inebriated.  Not fall-down drunk, but where you are off balance and staggering.  Now go about your day.

Yes, I walk around feeling intoxicated and staggering.  No, I do not have the pleasure of imbibing to get that way.  Any questions?