2 Steps Forward and 10 Steps Back

     I have often blogged about the daily struggles of Narcolepsy with 
Cataplexy (NWC) and Multiple Sclerosis (MS).  I am a strong individual and often make the comment that MS does not quit so I opted to quit MS.  The truth of the matter is neither of these incurable illnesses quit and there truly is not an option to "quit" them.  I often say if I had a choice I would choose to completely rid myself of the toxic neurological disease of Narcolepsy.  However, as of lately, I am unsure I still feel the same way.  MS is definitely like my fellow MSers refer to as the MonSter.  It literally has taken what I have built up of my life since 2012 and completely torn it down in a matter of 3 days.  Once again it rears it's nasty little head as if just to make sure I remember that it is the more powerful between the two of us.
     First, just a peek into my life.  Somedays I get up and stretch, other than a severe muscle cramp in my calves and the arches of my feet, occasionally in my quads or thighs, sometimes in my triceps.......it seems as thought my body is completely going to cooperate today.  As I get off the bed and step.....OUCH, pins and needles that I have to just endure and walk on to the bathroom or stand still for a brief moment until it passes.  Sometimes it passes quickly and other times I have to endure it and walk on before I piss myself.  I am sure I look pretty silly stepping to the bathroom as though I am stepping over hot coals when there is nothing there.  But its a fact that I cannot control my gait any better than some of my patients that come in our office that have just started to walk.  Then as I get to the toilet just before having an accident on myself.....i feel as though I cannot pee, then it starts and then I cannot stop it and it goes on and on......as though I want to sit on the toilet until my legs fall asleep, again complicating my morning.  Now it is coffee time.  Jon usually fixes my coffee but he works long hours and most days he is gone long before I get up.  So I am off to make my own coffee.  Carrying it to the bathroom to get ready for work is a skill I have mastered after many spills and self inflicted burns.  As I manage to get to the bathroom in one piece I start the shower.  Most times I forget to turn on the hot or cold water and stepping into a scalding hot shower or ice cold pretty much feels the same at first until my body recognizes the difference, after I have either burned or frozen myself.  I cuss, laugh, then want to cry but go on......I wash my hair, which by the time I rinse my shampoo out my arms are so tired and I am so short of breath I want to stop but I have to finish.  I finish rinsing my hair then wash my body and by the time I rinse, Shaving is no longer an option.  My arms and hands have had enough and I am exhausted. Sounds sill doesn't it?? Well I feel silly and weak writing this but also find such comfort in admitting the defeat I feel daily.  So after drying off its time to recooperate and recharge my batteries so I can put makeup on and fix my hair.  Somedays only one of these are possible.  It has been several weeks since I fixed my hair and worn makeup on the same day.  After living with the 2 demons daily I have learned that I have to let some things go and choose wisely so I am not low on "spoon" count before my day even starts.  Now I can get dressed and after trying to rack my brain to remember which day it is and what color scrubs to wear......I choose.  (I normally prevent this flustering moment by putting my daily work scrubs in order from M-T with the correct color on each day.  After tripping a couple of times and a few blurted dirty words I manage to get ready to go.  I manage to tie my shoes or have someone else to do it some days :( Then off to take the girls to school.  Some days the oldest drives to preserve a little more energy and focus.  Somedays I take a wrong turn or go the way I went to my old job but quickly straighten out and head to work.  Keep in mind I am exhausted before I walk in.  When I walk in the door I am proud to be able to work but also dreading trying to not only work, which is tiring, but keep all my glitches on the DL.  I smile and laugh alot to hide my pain or embarassment, talk alot to stay alert and focused, and move alot to prevent pain and numbness.  I am exhausted already and want to rest so bad It brings me to tears.  Then I remember I am the one who woke up from a coma and went to work four short months later.  I dig in and remember that I am fortunate to have my job and have the privilege to make a difference in so many lives daily.  So I suck it up and get busy.  Some days I am on target and work circles around myself.  Other days no matter how hard I try.......I cannot keep up or get things going in a smooth manner.  Everything I touch turns shitty.  Then I have to have a bathroom break and revamp, remember that it is not okay to give up or to cry.  Then I get back at it.
     This has not been the case this week.  I lost it this week.  I have worked and pushed myself to the point of exhaustion before and dearly paid.  Once nearly losing my life, once nearly costing someone theirs and nearly losing my RN license.  So after having two days of cataplexy attacks, which should not be happening and frustrates me to no end, and drifting during traffic stopping, i made a choice to stay home after lunch.  I cant risk anything happening because my brain and body made a choice to completely shut down and quit on me :(  It frustrates me so much because I have never quit on my body not once but it wants to quit on my almost daily.  So I have no enjoyment, I hate summer and can barely leave my house due to heat intolerence, but now this stupid illness is trying to rob me of my work ethic also.  There have been several days I have done the ultimate NO NO in by book.  I broke down and cried at work.  It just breaks my heart that I am no longer able to push my body to keep going.  You know the saying The Mind says Go when the body says NO.  This is not the case for me lately.  When my body or mind says no that is it......that is the final answer, NO.  
     Needless to say, I have lived with one disease most of my life, the other, probably longer than I have had a diagnosis.  I have learned to live with them and know what to do to over come obstacles related to memory and physical impairment.  However, I have learned this week to listen to my body and when it says to take a break, I need to listen and abide.  Because my body will not give me any other choice eventually.  It discourages me so much.  So much that sometimes I can do nothing but cry, which helps nothing.  I fought so hard to get back where I am with full time employment, fighting illness one day at a time, and my licenses in good standing where they should have always been.......2 steps forward, now my disease once again, set me 10 steps back.  The state deems me able to work and not draw disability but where is a job who allows the rest periods and days off when my illness waxes and wanes.  No one running a business can abide to such.  So like I said I have went 2 steps forward and 10 steps back.  Now to punt again and get back in the game.  As soon as this body allows me to walk vertical and push on. Maybe tomorrow I will get ahead 3 or 4 steps before being pushed back to the point of starting again.  
    Usually I have a more positive outlook but today I am thinking how fortunate I am to have not one but two rare diseases.....however at least after a year of misdiagnosis of Lupus at least I have peace Knowing what my diagnosis is but that is just the beginning.  
    Enjoy the video......Rob Thomas wrote this for his wife who suffers from autoimmune disease......the video is very close to how it feels to suffer from MS.

  .

This Is My Life

.     I have sat up alone until 2-3:00am several days this week.  In the hours I have sat and played games on my cell phone or researched the best alternative methods for relieving symptoms of each of my illnesses, I have also thought about my life and questioned myself.  What have you done with your life?  Did it matter to anyone and have you made a difference?  Has it been enough? I have never felt like no matter how many jobs I have held down at once, how many kids I have reared, nor how awesome they all are, I have always felt the need to do more or accomplish more. Now that I have let MS and Narcolepsy get the best of me lately and I no longer get to do hospice for a living, I sit and ponder on my life.  From the start of struggle to now.
     First of all I was a teen mom.  It was not glorified then.  There was no cover of a magazine or TV show.  Those shows seem to make the Teenage mom look both harder and easier than it really is.  I wrote Memoirs of a Single Mother over the years and hopefully one day I will publish it or get the nerve to share it so that people can understand what it is really like.  Not how Hollywood makes it look.  I remember sitting alone at night and pregnant and only 16.  I was alone, except for my parents and brother, scared to death, excited, and full of guilt for being excited.  I was humiliated and embarassed and full of guilt for allowing myself to feel such, because I am strong, a leader not a follower, and I am myself and have never tried to be anything except that.  I also was angry.  Angry because I gave in and made a choice about something I knew very little about.  Angry because I always "mothered" alot of my friends and also had done very little compared to some of them.  However, my mistakes were MINE.  Not my friends or my parents.  I look back and I am very proud of the type parent I was to him.  And to hear some of the heart felt things my baby boy, now 24 years old, says to me more than confirms it.  However it was difficult.  Such a young age to be worried about dating to find someone to accept he and I as an instant made family, to worry about dating different guys until I found the right one and confusing my son.  Despite my careful efforts and choosing to stay with the one I was dating because in a blink of an eye a year had passed, then two, that I invested in that relationship.  Despite my efforts to make his life the best I could as a single mother, I married, had a child then it ended in divorce.  Despite my efforts to shield, NOW two boys, I failed myself again.  Many nights of bars with my girlfriends, dating, and just loving enjoyable days with my kids, movie nights and baseball games etc, many lonely nights consumed me.  I don't know why I am cursed with the burning desire to be loved, accepted for my good as well as my bad, and having a soulmate to catch me when I fall and pick me up and brush me off, someone to share my happiness and sorrows with.  BUT I am cursed with such.  I again married and to no avail somehow I failed again, of course not by myself, but another failed relationship and two little girls later, I was a single mother again.  Full of guilt and a heavy heart.  Guilty of what?  Again in my life I just accept what life hands me and roll with the punches.  VERY shortly later I ran into my TRUE soulmate.  First thing I thought was "Denna don't rush, don't think so much either, just Let It Be.  Come What May.  After a few short months of dating my life changed forever.  A near fatal car accident that almost cost me my life.  Months of rehab and pain that I hope to never experience again, I was myself again.  Well so I thought.  That accident changed my life and affects it every day.  On a brighter note, that wonderful guy I met and dated stood by me through my coma and rehab.  Tucked me in bed.  He and my mother and father and step mom took very good care of me.  Later I became the luckiest woman alive and became that fella's wife :)) For the first time, whether it was me, my being more mature, or the fact I FINALLY got it right, I was happier than I could ever remember.  To my suprise again I found a way to allow someone to fall out of love.  I have never in my life hurt so bad.  I finally understood what it meant when they call it heartbreak.  That feeling of not wanting to pull out of your own driveway but Noone asking you not to go and allowing you to do so felt like a dagger.  Again my kids became my strength and this time I could not find the strength to me so strong and so resilient.  I crumbled.  For the firs time in my life I could not say I am bruised not broken.  I was completely broken.  I have a reputation.  One of being so strong that it is envious to others.  One of coming out of everything unscathed.  One of rising above it all.  A Phoenix.  I put that face on and tried my hardest to turn my pain into anger like I have always done.  I was angry.  I was hurt and mad as hell but other than through using a forked tongue and saying I was mad and not showing my hurt to just anyone, I was dead inside.  I literally wanted to die.  I feel so guilty to this day because for the very first time in my life I could not look at my kids or my parents and say that anyone was enough to pull me out of the dark place I was in.  As if things were not bad enough, struggling with Narcolepsy with Cataplexy, Nightmares nightly, being exhausted, being a single mom of four, losing control of my house because I truly did not care anymore, I got the news.  I got the diagnosis of an incurable disease.  My mom lives away and I am a daddy's girl too but outside of the parental support, I was alone.  Alone to figure out what was going on and what direction to take.  THEN BAM my life stopped and changed forever.  I had a wreck while at work and after another restless night and a night of being on call.  I have not spoke much about it.  But from what I am told if I want to make a difference I have to be honest.  I also find that the best writing comes from true self honesty and openess. I was guilty of two missed calls previously while on call.  Both close to 5am which is the time me, like most Narcoleptics, actually gets to a comfortable rest.  I was told that I would be terminated if I missed another call.  Therefore I slept in scrubs, shoes on, one foot on the floor.  I didn't miss a call but what occured cost me much more than a job I could have replaced.  If you know anything about Narcolepsy or Multiple Sclerosis you know that stress is the WORST thing ever.  I also had an extremely low sodium level at the time which added to disorientation and confusion.  I think I was beyond tired, drained emotionally and physically.  I had already told my boss via text message, after the second write up, that I needed to seek other employment because I could not do on call and have to be at work the next day any longer.  I was not accommodated and that is history.  BUT I have never taken care of myself and have always put myself second, well fifth behind my children and spouse.  Now alone with my kids I was STILL doing this. I found how that I need to take care of myself a little too late.  I had the wreck and due to be emotionless (so the police say) the cop decided to give a little balance test.  Anyone that knows me knows what a difficult task this is somedays.  This particular week was really bad and now I know due to stress of heartache, over worked, stress of single mother life, stress of new diagnosis, and stress of losing my insurance right after diagnosis of one of the most expensive illnesses to treat, and stress of doing my damnest to find direction.  I was wandering around aimlessly without being a wife and mom and working myself to death.  I had lost my way.  I went to jail for the first time in my life. At the end of the day I was ANGRY, sad, confused, and numb.  I called my first person, the one I always want to tell things to FIRST.  Good, Bad, and the Ugly.  We both cried.  To this day I have no clue WHY it happened or How.  I have YET to have an explanation.  My doctor has several good theories but still not an understanding of how and why I was in such a catatonic state and how a medication that had been filled once in a year and used two days prior had such a profound affect on me.  I guess I will never know.  Any damages done I am sure do not compare, but, I spent a year ripped down emotionally, physically, financially, and my self worth, reputation, and work reputation completely demolished.  I still struggled daily and cried daily.  I ended up losing my job followed closely by my house and car.  I am so thankful to have saved a TINY bit for a rainy day.  Needless to say it ran out very quickly.  Never in my life would anyone have ever thought, especially me who has NEVER returned home since I left at 20, and never drained my parents financially or used them for baby sitters constantly, would be without anything and unable to help myself.  I was broke, homeless, had no car, no job, no health, no insurnace for me and my kids, and noone to suffer with.  Truly my lowest point in my life.  Yet still I would trade places with the other party involved.  I would.  My heart breaks because of not being able to see, talk to, or help someone else.  My day will come, hopefully.  But after all the suffering, little did I realize my pain and anguish and worry with not only my legal issues, but my illness had just begun.  For an entire year I waited daily.  Everyday to hear from a lawyer, DA, Opposing lawyer, bill collector, doctor, or to recieve supoenas, court notifications etc.  It was not until an entire year later I was told to come to court and give a guilty plea to be done with everything.  That was one of the hardest things I have EVER done in my life was saying I was guilty of something I was not.  I was but was not, not intentionally.  However, I was so thankful to be done, guilty or not the end of it and not waiting daily for another moment and no threats of going to prison for being sick , I will take it.  Then came weeks of enduring things ordered by the court system that should have been behind me at that point, a year ago.  Now after a loss of a total of about $155,000 which includes court fees, fines, my dad's loss of bail money which was posted at $50,000, a lawyer fee of $20,000, loss of yearly income etc. There was 6 months of probation which cost monthly, color code, which cost monthly.  I have it behind me but I am still haunted and troubled deeply from it all.  The two main things was nothing to do with money. It was complete loss of self dignity, heart ache of anyone ever questioning my innocence, my loss of my work ethic and work reputation, my life as a hospice provider, and the embarassment my kids must have faced.  The friends it cost them whose parents would not let them come over due to newspaper publicity and incrimination.  Here's to you to all those "so called Christians" haha We obviously are reading two different Bibles.  Now, I have no job, feel like a failure with no purpose in life, and I have gained weight and feel terribly unattractive.  BUT I am happier than I have been in about three years.  I have everything I need.  I have my soulmate back in my life, my kids are all happy and excel.  I have my parents and wonderful step parents and a good, boring and not purpose driven, but good life.  I hate myself for not being able to contribute right now but my big guy loves having me at home and if that is what he wants then that's OK with me.  He always says to enjoy being able to stay home and be a mom for once.  It is very hard because I have been that mommy but also always made good money as an RN and made my own way.  BUT we are happy and my heart is whole.  I truly could not ask for more.  Well one thing........I do want to help raise awareness especially about narcolepsy.  I read a book that helped me more than I can explain.  Julie Flygare's "Wide Awake and Dreaming" and she also published a poem i wrote about my tormenting dreams to her website. JulieFlygare.com.  She emails me or comments on fb about certain things and she has no clue how inspired she makes me.  In days following hearing from her I am right there about to  become the Phoenix i once was :)) I emailed the Ellen show today and told her Julie is my hero.  Asked her to read Julie's book and to look at her website.  I included that all I was asking was for Ellen to look at my blog and to look at Julie's book and website.  And I included how I would like to meet Julie in person.  I hope that one day I reach someone and inspire them like she does me whether I do write a book, or it is through my poems, or possibly this blog.  I do not think I will ever get a book published because the Real story about struggles of being a teen mom is not near as intriguing as drama and MTV SO, maybe I will eventually get more followers and somewhere some girl that is NOT your average girl next door, although she appears to be, will look forward to my blogs to inspire her and make her hopeful.

Dear Diagnosis

Dear Denna,

  Today is the day!  The day you have dreaded for years.  The day a doctor confirmed your diagnosis that so many other physicians have tried to label you with over the past 10-12 years.  I know you have avoided it for so long because your a "go getter" and not a "quitter."  I know you hate labels and hate to be ill.  You have worked so hard being a single mother at times and maintaining your calling as a hospice nurse and have feared this day.  Feared of losing your ability and right to drive or provide care to your patients as they pass from this life.  But girl the time has come.  Its going to be bittersweet, knowing what is wrong and actually recieving treatment and possibly feeling human without tons of caffiene, nicotine, adipex, or herbal remedies for the energy you cannot remember having.  It is just time for you to take care of the one person you never have.......DENNA.

   It's going to be swimming against a current with all the trial and errors of finding the right medications that fit your lifestyle, which is very busy.  You will need to listen to your body for the first time and take time......time to nap if needed, time to breathe, time to meditate and allow stress to decrease so your condition isn't worsened.  Those bouts of cataplexy are intinsified when you are so stressed with your four kids that you try to be a good mother for, at times you overcompensate and all you do really is not necessary.  They love you anyway, unconditionally.  Your work as a hospice provider comes with a high stress level and could possibly not be the best career move for you due to the lack of schedule and the on call nights with having to report to work despite long nights on call.  You are constantly burning your candle at both ends and hardly know if you're coming or going.......well, that has to change girl!! For the first time in your life you need to establish more routine and work you SELF CARE into this routine.  You cannot live healthy any longer being spontaneous and by the seat of your pants.  No more seven on seven off on call jobs and working at the hospital on your days off.  STOP complicating things for yourself and take it easy for the first time.  Again, listen to your body, you know what it is trying to say. 

   Think about that near fatal wreck.  You were exhausted that day and went to work.  Never to return home to your children but for them to get a phone call that you were fighting for your life instead.  Remember the love of your life and how scared he and those children were.......for 18 days you rested.  Long needed rest but think of your loved ones who were so torn up over your possibly not recovering, the months of therapy, the multiple surgeries and the aftermath which you still feel today.  Did you ever stop and think that the reason for that wreck maybe your narcolepsy?  Well WAKE UP. 

   Let me show you the silver lining in case for the first time you fail to see it.  The doctors in AL will NOT pull your license or your RN license.  HOWEVER,  limit your driving.  STOP driving while exhausted.  How many train tracks and redlights and medical charting you can't recall do you have to do to take care of yourself?  How many patient visits in the middle of the night do you need have problems recalling?  Stop and stop now.  Slow down.  Allow the docs to treat you and enjoy your life AWAKE for a change.  Not dreaming with your eyes wide open, falling down laughing.

   I know you have probably already become somewhat antisocial since certain things have manifested in your daily life.  Like the collapsing with laughter, anger, and fading out during intimate moments.  I want to take this time to encourage you to love yourself.  Love yourself like you love your husband and your children, like you love your parents.  Love Denna enough for once to care for her.  Embrace your diagnosis and be relieved.  Stop hiding it and be open and make people aware.  Encourage your family and friends that love you to become educated.  Continue to laugh at yourself and make jokes about being half "nervous goat" :) People love that sarcasm and sense of humor you have. 

   So with this information it is not medical because you can obtain that from your physician.  I am writing you with the REAL life part because I do love you!! This is your third chance to take it easy and love your family as your full time job :) EMBRACE it. There will be days that your daytime sleepiness is in overdrive and it seems you just can NOT keep your eyes open.  It is going to be the same "painful sleepiness" that has always made you want to cry, call in sick, or play hookie when your were in school.  But your medications will help tremendously.  Especially your medications for cataplexy.  So your "nervous goat" episodes will be minute.  I guess all your friends will have to find someone else to startle or crack up :)  I would like to take this time to encourage you to be careful and be your own patient advocate as you are for your patients.  Avoid Ambien at all cost.  I know you have NEVER in your life been compliant with any medications BUT you HAVE to be compliant now.  To have your eyes wide open and see what all you have been missing while in a constant brain fog.  Things look so different.  Explain to anyone that tries to love you about agitation and frustration and occasional bouts of moodiness until you get all this in line and it starts to REALLY help you.  This could prevent a divorce or loss of people important to you.  Make them aware and the ones who truly care for you will support you and understand.  All those years of sleeping in class and avoiding the lunch line the first time you face planted in the lunchroom are not completely over BUT will be WAY less likely.  Keep your sense of humor and don't shelter yourself from the world.  Don't be mad or hard, you do not always have to be so strong.  It's okay.  It's okay to cry, be sleepy, take a nap, and refuse to drive even a short distance.  You KNOW when you do not need to be put into such stressful predicaments. 

   So put your ear phones in and do your meditation with music.  Turn on your James Morrison, Amos Lee, or Ray Lamontague when your feeling you are becoming anxious or overly stressed.  Take a nap.  Enjoy drug holidays and leave off your medications a day like you choose and enjoy a lazy Sunday.  Enjoy a peaceful night sleep occasionally now that you are being treated.  The visitors, the lucid nightmares, and terrors will be VERY minimal.  All your symptoms will not disappear but I promise they will decrease and your quality of life will greatly improve.  Have I ever lied to you?  Exactly, Enjoy the clarity and the full length movies, the intimate moments, and the "excuse" to take a nap.  Enjoy knowing your not crazy and it wasn't all in your mind and that you never had demons taunting you :)

   Rest easy my friend, my best friend, and remember what you always think and say.......I am going to say it to you now.......God gives his toughest battles to his strongest warriors!!!! Flight of the Phoenix girl!!!

                                                                                                                  Much Love and Support,

                                                                   

                                                                                                                  Denna D

Here In My Life........Just In Time

Here we go again
Please not tonight
Give me rest for once
Until daylight

Noone should dread the sun as it sets
And praise the sunrise
After a night with no rest

That's how it is
Here in my life
Most days I am much too weary
to be a mommy and a wife

Not to mention the fog
That smothers my thoughts and memories
Making it difficult to distinguish reality from dreaming

Days of sleepiness
Tired as hell
Seems as though nothing helps
To make me feel well

Days of doing tasks I cannot recall
Then wondering if i even did them at all

Reminding loved ones of talks we once had
Only for them to inform me we had not
Makes me so mad
The madness comes from the hurt within
But its not anger at all
But sadness from all the talks and memories
I cannot recall

The days of wasting life
Sleeping hours away
Fall into nights where morining
Seems like an enternity away

Tossing and turning
Watching the clock
Anxiously awaiting morning's arrival
And the visits to stop

Doing this and doing that
To wear myself down
So maybe I can get some sleep
And in my slumber remain safe and sound

I don't know the feeling of not being embarassed and ashamed
But the feeling I know too well
Is the one of sadness and pain
And dread
Of the strange disease I have in my head
That causes me to sleep any and everywhere
Except in my bed

The one that causes my body to collapse
And become limp
With anger, excitement, or laughter
That is merely a glimpse....
Of what it's like here in the life
Of a sleepy mommy and wife

Days and nights filled with forgetfulness
And regret
Of things I failed to accomplished
This weighs heavy on my chest
Almost as heavy as the visitor that taunts me at night
Suffocating me
Ruining my life
Night after night

Finally I seem to have spent all my energy and nod my head
In a blurry haze I find my way to my bed
Just in time
Once again
For the nightmare to begin

Another Restless Night

Darkness falls
Sleep eventually too
Sandman fails to allow deep slumber
Like he allows for you

My body is exhausted
And it cannot keep on
It shuts itself down
Unfortunately not for long

In your eyes I appear to rest
But here, where I am
It's such a mess

Shhhhh I hear him coming
Circling through my house
Walking room to room
I remain quiet as a mouse

Then I realize
I'm surely to easily be seen
And i need to run to protect my kids
Must do it sly and keen

His heavy steps get closer
And he moves closer to my little girl's room
I'm terrified and need to save her
But I am unable to move

My mind is aware that her life is in danger
But my body is paralyzed and will not move
My heart is raising oh what do I do

It's not from being afraid, from fear
Cause nothing can keep me from keeping my babies clear
Of harm and danger at any expense
But I am helpless and pissed it doesn't make sense

His footsteps are heavy
They come closer by the minute
This is a horror film
And I am in it

Why he is so slow I don't understand
What does he want from me, this man?
He passed by not harming my kids
My body will not cooperate and I can't even open my eyelids

I'm scared and terrified
But my body will not move
No matter how hard I try
I can do nothing not even cry

I'm breathing so hard
And the breaths are fewer and farther apart
As I lay here and suffocate
It stops
There goes my heart

I lay here and die
Cannot help but wonder what's on his mind
Why he visits over and over
Time after time in my sleep prying
But he will be disappointed to see I am already dying

Why must he enter here
Right now?
As I take, what seems to be, my last breath?
I will not face the wrath tonight
Of his riddles and tests
He always says he wants the heart from my chest
I'm already dying man just let me be
And finally I open my eyes one last time to see
He is coming anyway
Coming for me

My body is paralyzed head to toe
He is quiet now and where he lurks
I no longer know
All I can do is breath heavy with fear
Then my heart stopped cause I realize he's near

He stands over me I can feel his presence here to my right
Why does he torture me night after night
I can feel his breath right in my face
So close that his lips I can almost taste

I hear no movement any at all
But here a slight whisper as though he calls
For another evil lurking kind
Maybe after years of nightly torture this is my time

I'm no contest at all for a man anyway
But my body failed me again today
If only I could get up and ran for cover and not failed to protect like a good mother

Again after emotional torture and pain I wake up in my room to darkness and rain
My body is Alive and allowing me to move
So I get out of bed and move around my room

Looking for signs of the events of the night and the pale man that causes me such fright
No sign of his visit its always the same
His task is successful in driving me insane

I know he was not here where I am at
Cause lying peaceful and asleep are my children and cat
My dog never barked and is fast asleep
It's just same torture I get from this disease

It allows no time for sleep or peaceful rest and always awaken before he stabs a knife in my chest
When does it end or what medicine is needed
But they scare me almost as bad as the torture and bleeding