MonSter

MonSter

August 18 2012

9 years ago today I gave birth (by C-section) to my baby girl.  The doctors had decided that I was to give birth naturally, but she had other plans.  Since that time I have been diagnosed with Multiple Sclerosis instead of the stroke or migraine the doctors had originally assumed I had.  In these last 9 years I have watched her grow and watched the effects of Multiple Sclerosis on her.  Not only does this disease touch my life but everyone around me.  She unfortunately has had to live with a MonSter under her bed since birth.  

    I have always tried to hide my fears of facing yet another MS attack, or tried to make light of any of the attacks I have suffered.  I have walked her to school riding on my walker so she could have a bit of fun, instead of worrying her.  This backfired because when I was able to walk again unassisted she was constantly bugging me to drag out the walker and give her a ride.

    Something I have not been able to shelter her from is the MonSter fatigue that I suffer from on a daily basis, which has left me unable to work.  Little moments of joy have been stolen away from me simply because Mommy needed a nap.  In the summer time I am unable to manage little things like taking her to the park simply because the heat and the humidity drain the energy out of me at an alarming rate.  It seems so silly to be unable to work because I'm tired, but the simple fact is, fatigue is not anywhere in the same realm as tired.  Fatigue is where my body shuts down and refuses to budge even a little bit further because it can not function any longer.  Unfortunately, this is impossible to explain to a 9 year old and even adults have a difficult time comprehending.  I may be rude for missing a well prepared meal, or a social event.  It isn't because I want to miss it, but because my body is failing to respond to my wishes.  On occasion I am able to fight off the fatigue, but it only means that the next day is pretty much written off because I didn't take the time to listen to my body in the first place.  Actually, it isn't uncommon for my body to require days of rest after a missed rest period.

    I grow tired of sleeping all the time, I want to be awake, to be a part of life around me.  Sometimes I think I'd rather trade a limb or two if only I didn't have to spend so much time sleeping.  A normal healthy nap for an adult is 45 minutes.  Mine typically last for 2 to 3 hours at a time.  There are days when I require more than one.  I have tried altering my sleeping patterns to wake up early or late to see if I require less  or more naps, but my body will not respond and so I beat a hasty retreat to my quarters.  Since being diagnosed with sleep apnoea, I have had a use a CPAP machine and it has made a huge difference.  In the times that I am awake I'm actually awake and not wondering around in a fog.

    I wish I didn't have to face this MonSter every day with my child, but in the least I sleep more soundly with her next to me!