1st Sep, 2002
Beth Rothstein Ambler
Real Living with Multiple Sclerosis
ALL OF US ARE FAMILIAR with the common statement that MS is the disease of invisible symptoms. My fatigue is overwhelming at times, turning my life into an invisible prison. It's often easier to see what's wrong with other people, rather than oneself.
Words exchanged between my aunt and sister expressed my sister's concern that I would just stop going out and doing things. I'd stop seeing the world, or experiencing all there was to see, because it was just easier to stay home. She was right. I just disguised it with a sense of accomplishment about all the ways I'd found to make my life easier. Yet, making things easier is one thing; making yourself a shut-in is another.
It started with a freezer, and a frozen meat program, where you can order 6 months' worth of food at a time. Wow! Groceries delivered right to my door. They even stock it in your freezer. I also received frozen vegetables and potatoes. The next step was to find a good old-fashioned milkman. I did. I now have milk, bread, and eggs delivered right to my front door.
The shopping for gifts and clothes was easy. The Internet saw to that. No annoyed sales clerks, nothing out of stock-just go to another Web site. Everything was just a click away. It was official: I'd become a self-- contained unit in my own home. Even my favorite drugstore was on-line. I had no need to leave. It was just too hard. I
Sleepy in Seattle
I went to Seattle to visit my older sister Melinda. I hadn't seen her for 5 years, since I was diagnosed with MS. We'd spoken many times over the phone and corresponded through E-- mail. I was always amazed how she always understood what I was going through.
The first day in Seattle, she took me shopping. It's a passion that we both equally enjoy; we're perfect shopping partners. Well, we were, pre-MS. At first, I was like Willy Wonka in the chocolate factory. By the third hour, though, I was overwhelmed with fatigue. My sister came out of the dressing room and I burst into tears. She hugged me, wiped away my tears, and asked the sales clerks to get me a chair. She ran from the store to get the car.
For the remainder of the trip, she treated me very differently. After 2 hours of shopping, she would ask me how I was feeling. I'd reply, "Great, Melinda, I can still shop for another hour before I need to lie down." "That's great, Sweetie," she would reply. At the same time, she would grab my hand and pull me from the store. When I protested, she told me she would bring me back to that exact same store after I went to my room and rested for a half hour. She kept her word.
Something very important came out of that trip. There are many things my older sister has taught me: how to put on make-up when I was 13 years old, how to dress with style, and how to ditch a bad date without hurting-his feelings. She taught me compassion. However, most recently, she has now taught me how to live my life in 2-hour intervals.
Staying in Seattle with my sister was the best vacation I've ever had.
Not just for the shopping (that was great!), but also for the transition
I was able to make. I wasn't accepting my invisible symptoms. I looked
in the mirror and still saw a healthy person. If I stayed in my prison,
I didn't have to see myself the other way. And look what I'd have missed-life.
© 2002 Real Living with Multiple Sclerosis