I was diagnosed with MS at age 18 (the February before HS graduation.) I temporarily went blind in my left eye due to optic neuritis, which is the event that sends many people with MS to the doctor before receiving the diagnosis of MS. Steroids cleared the inflammation and I almost went on with life as usual. The inflammation of the optic nerve caused a residual effect of poor depth perception. This meant that a couple months later when I attempted to play Varsity tennis for the second year I couldn't perceive how high off the court the little yellow ball bounced. Subsequently, I didn't play a second year of Varsity tennis. My first experience with MS disappointment.
I went on to serve a Mormon mission in Canada and graduated from Washington State University having studied Microbiology. I didn't have any setbacks until 11 years post diagnosis when suddenly my body very quickly fell apart and I was nearly bedridden for 3 months. My walking quickly became labored and painful and I lost most of the sensation in my hands and fingers. This meant I couldn't cook, vacuum, fold clothes, shave my legs, wash my hair or open a door with a child safety cup on it (but who can really open those anyway?) This was a very stressful time in my life affecting my marriage and molding my 2 and a half year old into the very independent 12 year old she is today.
We were blessed during this time to have women at church volunteer to bring in dinner 3 nights a week. Had they not helped in that capacity my family either would have starved or my husband would have left us (no joke). Jeff worked 5 minutes from home and had an hour lunch break so he drove home everyday and fed us lunch. In the evenings he would do the laundry and housework I couldn't do. I spent most of three months laying on the couch (I lied there pretty much all day and slept there at night. The couch for some reason was more comfortable than the bed.) During the day my 2 1/2 year old watched many movies and played alone. By the time she turned 3 she could quote most of Monsters Inc. At night I lay awake on the couch with the sensation that rubber bands were tight around my legs and that my feet were on fire.
I started on Rebif and after a month my symptoms started improving. I saw a physical therapist for several months after who not only worked with me on regaining balance and muscle strength but also taught me exercises to teach my brain/hands to work again. It was an exciting day for both of us when while blind-folded I held a paper clip in my fingers and said, "This is a paper clip."
I never fully recovered. I have "permanent" nerve damage that makes my hands/fingers always feel "fuzzy" and I have little fine motor skill in the tips of my fingers (don't ask me to button up a shirt).
Five years ago baby number three was born; my son. On that day I fell, hard and busted my ankle. Since then my health has declined. I walk with a cane and use a wheelchair when at the mall or Costco.
I am going to do a series of blogs about MS and my journey with MS. Isn't every aspect of life a journey? There is much disorder in life but also so much to delight in.
If you know someone with multiple sclerosis or another disabling disease please direct them to my blog.
