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.

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Hard Pill to Swallow

     Often in life we deal with things that are "hard to swallow."  Rejection, death of loved ones, broken heart, humiliation, and sometimes, the truth.  Lord knows I've had my days of hard to swallow but seems as though the absolute worst of times can be the best of times. I don't know if this is a mind game or trickery I have mastered to soothe my soul during constant obstacles or if I really do have a knack for being thankful for the good in my life.
     For starters I struggle with the obstacles of MS and Narcolepsy with cataplexy daily. No one or anyone EXCEPT someone with both can fathom the daily hurdles.  The struggle of simply getting a shower which somedays is more tiring than the actually not having a shower, hard pill to swallow. Being so fatigued that I prefer to not speak to or see anyone from the outside world, arms giving out before I can dry my hair, not to mention getting so overheated that I no longer feel like doing anything else before having a nap, very hard pill to swallow.  Not being able to remember or recall things that happened or forgetting important dates yep I get choked on that also. Numbness or pain to the point I'd just soon stay in bed all day to avoid a fall, injury, or embarrassment, yes big pill to swallow.  Fatigue that's more than being tired and even a 24 hour shift as a nurse plus being up for 24 more doesn't touch it. Again hard to swallow when I used to be someone that everyone thought NEVER ran out of energy, worked two sometimes three jobs.  People assuming your lazy or depressed because of something other than trying to make the best of a life drastically changed? Yeah you guessed it.
     One of the two hardest things is trying to explain it to people or trying not to get pissed over the advice they give when they are not even educated to the disease. I find everyday the less I like the general population and the more I like those like me. Those with autoimmune illnesses where their body is constantly trying to attack itself.  No two people are effected alike. Not everyone falls asleep in their soup and with MS not everyone is in a wheelchair. So all the advice, judgement, and misunderstandings are a very hard pill to swallow.
     In closing the hardest of all for me is the day of my accident and the arrests and DUI and mostly the media spotlight and all the cruel comments about me and wishing bad things on my innocent family who had nothing to do with it.  It was so hard to have not one person other than my family and friends and those that knew me to even try to defend my character.  Anyone that knows me knows my pride was my reputation and my God given talent of being such a skilled hospice nurse.  My heart hurts every single day for a man don't even know. I wish him nothing but the best and for whatever would make his life easier.  Not one time did I pray for myself through any of this nor try to excuse anything. I was physically and emotionally exhausted and like other times due to what I know now was cognitive impairment, took the wrong medicine at the wrong time. I was oblivious to what I had done. I was living in a nightmares of my own and continue physically and mentally daily to do so.  Not karma because the good lord knows me, what's in my heart, and that things were totally health related and not intentional. But the people of the world avoid ambien it is truly a hard pill to swallow and should be banned, in my opinion.
     In closing, to those who wish harm, passed judgement with no knowledge of circumstance, to the people who never give others a chance, cannot forgive, cannot ask forgiveness because crow is also hard to swallow, those who gossip, and to the ones who claim to have never known me or aren't truthful about any relationship with me, claim to be Christian yet lie and judge? Be prepared because karma is the hardest pill of all to swallow. So save room for it. Treat people how you want to be treated because you can have your life as you know it jerked out from under you too. My life has changed drastically because of two invisible illnesses and I "look fine" I know this and please never say it to me again for your pills will be hard to swallow with your jaws wired shut ;)

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

The Reality of Dreaming

We all dream.  Some remember some don't.  Some wake us up crying, some wake us up smiling, and some wake us up scared.  The reality of a dream for me is usually lucid and more realistic than most can imagine.  As of lately I have become a member of some pretty awesome groups that have led me not to hide my illness.  No, not my MS, but my narcolepsy with cataplexy!  The reality of a dream for me comes in naps during the day, drifting off for seconds at inappropriate times, often unnoticed by people around me, or my night slumber.  A dream in my world is very vivid and lucid.  From the man that visits occasionally with heavy footsteps to the pressure on my chest sucking the air and life from within me haunt me more than not.  Lately, my night visitor, the large pasty pale man with the stitched wound on his face wearing loose clothing and heavy boots has left me alone, however the lucid dreams of trying to move to get to my children and save them while my body is paralyzed but my mind is wide awake haunts me.  Lately my dreams are taking place in my granny Aycock's old home on Route 3, otherwise known as Woodmont Drive.  The first one was about two months ago.  Me and Matt were staying the night in the room my brother and I stayed as kids. The antique white bedroom suit was exactly as it was then. A huge bed that I had to jump to get on, an end table with a clock and lamp, a dresser with a mirror that was aged with antique perfume bottles placed neatly on top, and a chest towards the foot of the bed.  I can see it now almost as well as I can see it in that dream.  It started as a weird scenario that would never happen.  Matt and I were separated and I was angry at him because he had given a key to a friend I used to work with and allowed her and all her kids and spouse to stay there.  We were arguing because he had NO RIGHT to allow anyone to stay in my grandparents home especially since they were deceased and he and I were separated.  I decide we should bed down for the night and halfway into sleep I heard a dog fight outside the window to the right.  I opened the window and two dogs were being attacked by two other large dogs.  As I went to the window it opened up into a walk through door, I walked out and yelled at the dogs to "git!" One growling walked towards me and transformed ever so smoothly into a male human and said for me to mind my own business and go inside! I turned and ran inside and laid back down.  Then I heard a ruckus in the room where the other family lay asleep.  Startled and thinking I was dreaming I sat up in bed to a demonic looking figure half animal half man.  His neck was crooked and he had a shot gun!! Because his neck appeared broke he was a terrible aim! He shot and shot at me and missed and I explained to Matt he was a bad shot and can't hit the broad side of a barn and to keep moving towards me as he aimed to shoot at him! Matt did so and this demon kept shooting and we were lucky to avoid injury and Matt tried to save me and got shot in the arm! I screamed and told him he shot my love and he would die!!!!! As he laughed an evil hysterical laugh that horrified me the only thing close was an ax.  I picked it up and hit him with all my might, you can imagine revenge on someone or something hurting the one you love!  I so vividly felt the ax sink in his skull and as he fell I could NOT stop and continued to hit him over and over before checking on Matt!! I woke up breathing hard and looking around the room!! Every sound all night made me wake up!! By the time dawn came I found myself paralyzed once in thinking I heard footsteps!! Only to finally be able to move and realized it was the leak in the shower. WHEW!!! I told some of my family about it! I shared this I suppose cause it was the first lucid dream that I conquered my demon! I was also but at the same time, not so lucky in my next dream.

This one was two nights ago.  It took place at my granny Aycock's house as well.  Her big pretty front yard with the two big trees, one in which our old tree house once resided and I spent many summers. This dream didn't even start pleasant it went straight to a dark headed male that I do not know shooting at me and my family! The man, whom in my dream was an acquaintance and had been no threat to us, opened fire.  It quickly fast forwarded to me being gunned down and looking at this man as I lay in the ditch by the mailbox in my grand parents front yard.  As he walked away I raised my head and my dad was across the gravel driveway In the other ditch.  I told Daddy that whatever he shot us with was NOT killing us to lay still and stop breathing if he approached again.  My dad then offered the advice to "lay still baby if he thinks you're dead he will stop!" I told my dad lay down and shush!!  I lay there hurting and helpless other than to offer that advice to dad and tell him to pass it down to the others.  I laid very still  and heard him coming, I was willing to take the brunt because I was his main target!  He shot my daddy again and came to me........he shot me again and again!! It felt like razors shaving through my body and burned like fire and I found the strength to lay still.  My hand flinched and he said, "Aww your hand moved that's a sign you aren't dead!" And he put his gun pointe blank range on my palm and shot!  I managed to stay still!! As he walked away down the road I waited til he was gone far enough and lifted my head and my dad was looking at me........I woke up on the couch in my house.  I needed to go to bed with Matt but I was afraid it was another restless night and didn't want to keep him up.  Before I could move I fell asleep and I was slumped over and had a sleep paralysis attack and felt as though I could  not breath.  Knowing I was not around Matt to arouse me for that split second or minute I felt as though I would die.  This of course kept me from immediately wanting to sleep.  I sat up a few minutes before residing to bed with Matt where the rest of the night was a sequel to my dream picking up at different locations. 

Exhausting!! Just a day in the life of Narcolepsy!! No wonder we are so exhausted all day and have doctor ordered naps daily!!! Not to mention a day filled with wonderful cataplexy triggered by laughter, pleasure, and anger or excitement. All of which I have learned to stow away way beneath the surface due to cataplexy.  It's been a rough year which is a whole different post on an entirely different day!