It’s been twelve years since the diagnosis. I think about what it was like then and what it is like now.
in 2010 the demyelination was happening so fast that i felt tremendous fatigue. All I could do was sleep. I survived because I had a neighbor who came over and helped me. I decided that I was going to do some things for the last time. We used to call it a bucket list.
The first thing I did was go ice skating. I used to skate every day. I loved going fast backwards and forwards and doing pirouettes. My son was on the hockey team so we skated together.
After my first and only big flare, we got on the ice. I had given my skates away years before so I was in rental skates. I was ready to go out and skate fast. But there I was wobbly legs hanging onto the wall like a beginner. They used to call them rink rats. After much determination and effort I was able to venture away from the wall a little. I finally found a stride and managed to turn around and skate backwards. Then I started pirouettes. That is when I got in trouble. Skating on one foot with MS? Oh my gosh! I took a major spill. So that was I e skating.
Then I signed up for a swim for MS drive. I told them I was going to get in the pool and swim a mille without stopping. Well, it turned out that halfway across the pool, about 25 meters I started to sink. Only a year before I was still driving a long windy road every day to jump in the pool. I was one of the regulars and enjoyed it when some guy who try to get competitive and race me. They would get so mad when I beat them to the wall. Swimming was my lifeline. Getting in the water every day did something magic and the locker room was fascinating social life.
I said I would swim a mile. I think it took me two months to complete my mile. After that, I only went once a month because I had to get an allergy shot and the doctor’s office was on the way. It took so much effort to stroke hard enough not to sink. The locker room where I had spent most of my adult life suddenly seemed daunting. The showering and changing routine that I had done every day felt very different. I couldn’t remember to get my goggles and shampoo and cap. It all seemed so complicated. That was swimming.
The next thing I was determined to do was go Salsa dancing one more time, I signed up for a beginners class. The partners were so timid they wouldn’t even attempt one turn. I finally found a really bright pre-med student who knew how to dance. I told him I had been diagnosed with MS and was determined to dance one more time. He was starting out doing the beginner’s steps. And I said, “I want to go all out. Try me!” He was a fabulous dancer and we turned and danced our head off. I was starting to get tired but he kept pushing me. Finally the room felt so hot even though in was January. My face was beet red from being overheated. I fell to the floor and couldn’t get up, not because I couldn’t dance. but because I was HOT. He got really scared and kept pouring water over me until I could get up and go home. I thanked him for giving me a chance to dance one more time.
i guess you could call this the MS olympics. After that I decided that the place I belonged was in bed with my iPhone 4. That is where I could sink into wonderful rest. My hobby was doing Spanish/English translation online. A translator would write about a word they struggled with and we all competed to see who could get the right answer. I still do that but that site has dwindled lik this one.
So here I am. Have graduated to a hospital bed. Today my 95 year old mother called to wish me a happy birthday.
in 2010 the demyelination was happening so fast that i felt tremendous fatigue. All I could do was sleep. I survived because I had a neighbor who came over and helped me. I decided that I was going to do some things for the last time. We used to call it a bucket list.
The first thing I did was go ice skating. I used to skate every day. I loved going fast backwards and forwards and doing pirouettes. My son was on the hockey team so we skated together.
After my first and only big flare, we got on the ice. I had given my skates away years before so I was in rental skates. I was ready to go out and skate fast. But there I was wobbly legs hanging onto the wall like a beginner. They used to call them rink rats. After much determination and effort I was able to venture away from the wall a little. I finally found a stride and managed to turn around and skate backwards. Then I started pirouettes. That is when I got in trouble. Skating on one foot with MS? Oh my gosh! I took a major spill. So that was I e skating.
Then I signed up for a swim for MS drive. I told them I was going to get in the pool and swim a mille without stopping. Well, it turned out that halfway across the pool, about 25 meters I started to sink. Only a year before I was still driving a long windy road every day to jump in the pool. I was one of the regulars and enjoyed it when some guy who try to get competitive and race me. They would get so mad when I beat them to the wall. Swimming was my lifeline. Getting in the water every day did something magic and the locker room was fascinating social life.
I said I would swim a mile. I think it took me two months to complete my mile. After that, I only went once a month because I had to get an allergy shot and the doctor’s office was on the way. It took so much effort to stroke hard enough not to sink. The locker room where I had spent most of my adult life suddenly seemed daunting. The showering and changing routine that I had done every day felt very different. I couldn’t remember to get my goggles and shampoo and cap. It all seemed so complicated. That was swimming.
The next thing I was determined to do was go Salsa dancing one more time, I signed up for a beginners class. The partners were so timid they wouldn’t even attempt one turn. I finally found a really bright pre-med student who knew how to dance. I told him I had been diagnosed with MS and was determined to dance one more time. He was starting out doing the beginner’s steps. And I said, “I want to go all out. Try me!” He was a fabulous dancer and we turned and danced our head off. I was starting to get tired but he kept pushing me. Finally the room felt so hot even though in was January. My face was beet red from being overheated. I fell to the floor and couldn’t get up, not because I couldn’t dance. but because I was HOT. He got really scared and kept pouring water over me until I could get up and go home. I thanked him for giving me a chance to dance one more time.
i guess you could call this the MS olympics. After that I decided that the place I belonged was in bed with my iPhone 4. That is where I could sink into wonderful rest. My hobby was doing Spanish/English translation online. A translator would write about a word they struggled with and we all competed to see who could get the right answer. I still do that but that site has dwindled lik this one.
So here I am. Have graduated to a hospital bed. Today my 95 year old mother called to wish me a happy birthday.
I use to ice skate but no where near how you skated. I used to swim but no where near how you could swim. I used to social dance but salsa was out of my reach. 
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