Saturday, June 18, 2011

How I Met The Monster.....Episode One

A year ago this week my life would change forever...

I remember the details like it was yesterday.  The day started out like any other.  I got up early as I usually did, fixed myself a cup of coffee, got freshened up and dressed.  I had a few things I needed to get done before it got hot. It was a bit warmer this week, but spring in NJ is sometimes like that, comfortable one day, hot and humid the next.  The house was super quiet that morning, my sister was in Delaware with my niece for some medical appointments. I had the house all to myself!! I love when that happens, sometimes silence is a blessing.

It was mid morning, I ran a few errands and made a quick trip to the market to get what I needed to finish dinner.  One of the things on my to-do list was to replace the oil in the deep fryer and give it a thorough cleaning.  I so hate to clean the fryer, I usually try to pawn this task off on my sister.  The house was still nice and cool so there was no need to turn the air conditioner on.  I remember working up such a sweat while cleaning the stupid fryer that I said out loud to myself,I am never cleaning this thing again.  I was dripping sweat from every part of my being, it was horrible, I even had sweat running off the tip of my nose.  I had never had that happen before.  I was soaked to the skin.  I knew I needed to take a shower to cool down, but felt like I was going to collapse, so I went and rested on my bed before I got in the shower.  Well much to my surprise I woke up an hour later.  I felt much better and went and took my shower, this horrible weakness overcame me again, I was afraid I was going to fall out of the shower!  So back to bed I went.  I was becoming a bit concerned, but figured it was the heat or my blood sugar.  I did a glucose check, that was fine so while I was at it I also checked my blood pressure, that was a little elevated, but it was nothing to fret about.  By now I felt so weak I could hardly keep my eyes open, I was asleep in a matter of minutes.  

The heat of the afternoon sun shining through my bedroom window woke me.  I felt rested and refreshed, or so I thought.  I got a few things ready for dinner and had to stop again, every time I tried to do something I was becoming more and more drained.  I really didn't want to go back to bed for a third time so I decided to take a short break and watch some TV in the living room.  Well just as I had earlier, I fell asleep again.  This time I was awakened by the sounds of my sister coming through the front door upon her return from her trip.  The first thing she said to me was " you look like shit, are you feeling okay?"  I remember saying to her a haven't felt good all day, I was fighting a headache.  When I heard my voice it startled me a bit, I sounded funny to myself, almost like I had a mouth full of marbles.  Again my sister asked, "are you SURE you're alright?"  I repeated "I'm fine, just a little tired" with my mouth full of marbles!!  "I think I just need to go lay down again, I repeated", but something was different this time.  I was trying to raise my head and gesture with my hands and arms as us Italians try to do when we talk, well to my shock I could barely lift my head or arms!  I mumbled to my sister "I weally need to go back to bed"!  I was unable to get out of the chair, she helped me up and walked me to my bedroom for what would be my third trip.  I knew something was horribly wrong, but I was scared, stubborn, and determined that whatever it was would pass after I got more rest.  I couldn't have been more wrong....   Tune in tomorrow for Episode Two... 

June is Myasthenia Gravis Awareness Month
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  1. I LOVE that I met you but I HATE why. I felt every word of this post. I remember way before I was diagnosed...I was actually IN NEW JERSEY getting ready to go to Atlantic City, and I was SO exhausted. I just sat on the couch and could barely move. My eyes were closed, but I wasn't sleeping. My boyfriend at the time was like, "You want to stay home?" I was on vacation, so I was like, no way, I want to go! That was 15 years ago.

  2. Yes these Monsters are bad, sorry that you met one. Yes going back to bed is not always good

  3. That nasty MG Monster gets around, doesn't he?! Sorry you had to make his acquaintance! Boy, could I ever identify with your experience though!

  4. Hi Rachel,

    I know that feeling well. Its like a freight train has hit you and when you sleep its dreamless and black almost like you are unconscious.

    My undiagnosed MG came on the same way out of the blue. Working full time enjoying life and then Bam everything changed.

    Looking forward to tomorrows post to hear what happened next. But I hate the fact we all have this stupid disease.

    Much love
    Rach xx The Myasthenia Kid


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