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    Twelve years

    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.



    #2
    Happy Birthday palmtree. Your story of all you could do is amazing. 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.

    I am sorry you have graduated to a hospital bed but you ARE and Will BE and inspiration to me and many others.

    I wish you all the best.

    God Bless Us All

    Comment


      #3
      Happy Birthday dear palmtree!

      I think it is common reaction to want to do all you can before you can't. Some of my favorite memories growing up were ice skating nights with my Dad. He was a great skater. I could skate backwards, but never gracefully! And forget any spinning. I also tried about 5 years ago and was so shaky.

      Despite spending many summers in the ocean, I was never a strong/smooth swimmer. I think since I learned in the ocean, I always fought the water more. I always envied the swimmers in the pool, gliding so smoothly in the water.

      And forget dancing - two left feet here! And you wouldn't want to hear me sing Happy Birthday either

      I am glad you went after your bucket list. You continue to be an inspiration to all as you continue your MS journey.
      Kathy
      DX 01/06, currently on Tysabri

      Comment


        #4
        Happy Birthday ! I had a bucket list too. I’m glad I did. I tell all the young people to go and do stuff now. Don’t wait. But it’s not so that I miss that. Now I just miss the ease of everyday stuff that’s become more of an effort. , causing some anxiety and some frustration and inevitably some sadness.
        I just miss being normal. I try to keep a brave face…
        When no one is looking and my brave face is gone I know I can come here. I even sometimes bring my brave face here if I think someone needs it. Because we all have to put it on from time to time.
        It’s nice that I really don’t need it here.
        It was one agains't 2.5million toughest one we ever fought.

        Comment


          #5
          Thank you palmtree for sharing your story and thanks to everyone who has responded so far. It is good to read that people can still try after diagnosis and the changes we go through. I felt the worst when I had to stop driving because my dizziness made me a dangerous driver.

          Comment


            #6
            Thank you guys for all of your kinds words. I was no champion, but watching the Olympics brought back memories.

            Oceanpride, I, too, feel a lot of anxiety, frustration and sadness over the challenge of doing simple things.

            It seems like everyone has moved on from coronavirus but not all of us can snap our fingers and shake out of MS.

            Pennstater, that is so cool you used to go skating with your dad. I understand how you feel about swimming in the ocean. It’s a lot harder fighting the waves. At least the Atlantic Ocean is warm.

            In 2000 I went to Puerto Rico. The beaches there are really nice and the water balmy. Then a hurricane was about to come. I wanted the experience of swimming in the ocean in a hurricane, I swam far from the shore to see if I could make it to Cuba. Boy was that foolish!

            Comment


              #7
              Thanks for sharing, Palmtree. Your story is inspirational, even though your progress towards physical prowess is no longer continuing.

              I've never been athletic, even prior to MS. My goals used to be to be "active" by volunteering. But I do less and less of that every year.

              Now, my time and energy is focused more in self care.
              ~ Faith
              MSWorld Volunteer -- Moderator since JUN2012
              (now a Mimibug)

              Symptoms began in JAN02
              - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
              - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
              .

              - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
              - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

              Comment


                #8

                Hi palmtree!

                Thank you for sharing a bit of your journey with us.

                You have a great talent for writing as well!
                PPMS for 24 years (dx 1998)
                ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                Comment


                  #9
                  Happy belated birthday, Palmtree! Thanks for your sharing your story with us. I've enjoyed learning about you over the years. Glad you checked some things off your bucket list, just sorry you couldn't do more.

                  So sorry to hear about the hospital bed. The only reason I'm not in one is because of my husband.

                  I've been wondering how you've been doing after being bedridden for months. I remember you fell and broke your back last summer. A setback like that is hard for anyone, but even harder if you have progressive MS.

                  Today my 95 year old mother called to wish me a happy birthday.
                  My mother in law just turned 96 last week. She has her share of challenges, but still lives by herself, in the same house she's lived in for decades.llp

                  You have a great talent for writing as well!
                  I agree!!
                  Kimba

                  “When you change the way you look at things, the things you look at change.” ― Max Planck

                  Comment


                    #10
                    Hi palmtree and happy belated birthday! I just came back from vacation, so I'm just now catching up. I loved your bucket list stories and thanks for being so candid about sharing. As others here, I agree that you are an inspiration and help to others.

                    I used to constantly lament on what I could do vs. what I can or cannot do now, but it made me feeling so depressed. I still grieve at times, especially during these last 2 or so years as my abilities have gone downhill.. like a skier on a steep snow hill. But what to do except accept it? I'm trying. Grocery shopping was torture yesterday - I only shop in the produce section while my dh shops for everything else and I was exhausted!

                    I guess the memories of years past at least gives us good memories
                    You as well as us are MS warriors!
                    Take care

                    1st sx '89 Dx '99 w/RRMS - SP since 2010
                    Administrator Message Boards/Moderator

                    Comment


                      #11
                      Sorry I'm late but Happy Birthday! Thank you for sharing your journey. I am in awe at the things you have accomplished.
                      He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
                      Anonymous

                      Comment


                        #12
                        Thanks for sharing! Do people "celebrate" their date of finding out their diagnosis? Mine is coming up on four years and so far each year i've taken the day off of work to do whatever i want. Drink Starbucks, go to lunch, go shopping, get self care. Plan whatever i want to reflect on the journey so far. My four year will be March 28th and i'm already thinking about the ice latte i want and which stores i will go to!
                        Dx March 2018; possible first episode: August 2011
                        Tysabri May 2018-June 2019, Mayzent July 2019

                        Comment


                          #13
                          Originally posted by Jennaly16 View Post
                          Thanks for sharing! Do people "celebrate" their date of finding out their diagnosis? Mine is coming up on four years and so far each year i've taken the day off of work to do whatever i want. Drink Starbucks, go to lunch, go shopping, get self care. Plan whatever i want to reflect on the journey so far. My four year will be March 28th and i'm already thinking about the ice latte i want and which stores i will go to!
                          Interesting question. I definitely note the anniversary date of my first flare. It involved an ambulance ride to the ER and was truly the beginning of my journey. The date of dx didn't occur until almost 2 years later. Although I've never celebrated dx, maybe I should. That was the beginning of knowing what the problem was and beginning to be able to do something about it.

                          ~ Faith
                          MSWorld Volunteer -- Moderator since JUN2012
                          (now a Mimibug)

                          Symptoms began in JAN02
                          - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
                          - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
                          .

                          - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
                          - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

                          Comment

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