Wednesday, August 29, 2018

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 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 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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