Ugly MS

Being disabled and/or chronically ill has its challenges for sure.  Not only just the obvious ones but ones that you can't possibly think about if you are lucky enough to have escaped this plight.  I was living my dream life, set up just as I prescribed for the most part; college graduate, married and 3 beautifully wonderful healthy children.  My husband was gainfully employed which allowed me to stay home and care for our children and household management.  I was volunteering at their school PTSA board, classrooms, field trips, room mom, health room.  Meanwhile carrying out my responsibilities at church as a visiting teacher, primary teacher or YW leader. The day i was diagnosed I felt like nothing I believed or planned for myself was even worth considering  anymore.  Multiple Sclerosis was just a BIG OL" QUESTION MARK for the future.  I may heal and never have trouble again.  I may flare and never get better at all, I may flare and partially gain what was destroyed.  No doctor could tell me how my MS was going to work against me.  I lived in denial for several years.  Setting aside the fatigue that wanted to claim each day in the early afternoon, and for the most part I lived several years as if I was perfectly healthy.   The day came where my face was half frozen and the whole left side of my body was weak and uncoordinated.  I looked like a stroke patient.  My smile was half cocked.  The deep wrinkle in my forehead between my eyebrows was smooth.  The dimple in my cheek was gone.  I had no muscle tone or control.  I sunk into a deep depression and knew my days of denial had to be done.  this ugly monster was in me and it was here to stay. It was going to take me down each and every time it wanted to.  There was nothing I, a doctor, or even medicine could do to change or improve any of it.  It makes me emotional still just to type it and say it again.

this is several weeks into the exacerbation.

One of the most frustrating things for me about MS is the fact that i LOOK healthy enough to you and everyone else.  Some illness are like that.  A cancer patient we recognize. an amputee we recognize, an elderly adult we recognize,  the wheelchair we recognize, the crutches we recognize.  Even a scar gets its due empathy. We are all familiar with these disabilities and maybe have a little experience with one or several. You don't see that my feet have little feeling in them and the sensation of touch is distorted all the way up the inside of my right leg. What you don't see in me is the fatigue.  When i wake in the morning I feel as though I haven't rested but I must function. The fatigue makes my brain foggy. it is hard for me to remember names, dates, errands, little things and big things.  I actually have three running calendars with the hour by hour errands of my life.  This is because of fatigue. Listen to me when i say:   Sleep and rest will not fix this, it is a fixture in me.  It's my new normal.