- Posted August 13, 2012 by
This iReport is part of an assignment:
Living with MS
My MS, My Loves, and My Free Gift with Disease
- hhanks, CNN iReport producer
Along the way I have had to learn to ask for help, something that is difficult for me. We moved to be closer to my parents for extra help when I get sick and that has been wonderful. I have fantastic friend near and far who are extremely understanding and supportive of this.
While Ann Romney still has her horses, I had to partially give up yacht racing, no longer having the energy to be out on the boat all day on the weekends or in the heat for that long (there are ice vest but that adds to the weight of the boat, a big no no). I still get out for mid week races but it is not the same. I spent a week in bed at Christmas with a horrible relapse unable to hold my son, wondering if I would be with my son on his first Christmas morning.
My husband has become a great support person but at times feels frustrated that he can’t fix my disease. When I started my injections we were worried how would I remember to take them or where I was supposed to inject next, we are tech people and knew there must be “an app for that” but there wasn’t a good one that let me track and take notes of how I felt and was reasonably priced ($0.99). That is when he started his work. He asked me questions periodically about what I would want in an app and over the next 6 month in his (rare) spare time he would work on it and finally created an app for me to track everything (MS Journal).
This past year I started to get involved with the MS society. Doing my first MS walk and volunteering at the MS Bike event. Next year I would love to bike the 50 miles but we will see. I view this disease as a challenge now. What can I do? How far can I go? What haven’t I done that I still want to do? How can we work around this unknown thing…the ticking bomb that may or may not ever go off. I have taken a positive view on most things, this does stink but it could be worse.