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    • #16126
      Jodi Enders
      Keymaster

      Something that still sets back my acceptance of having MG is when I attempt to perform a hobby that I did pre-symptoms without any modifications and not achieve the expectations I had set for myself. I have discovered that the key to not set myself up for disappointment is to proactively adjust my hobbies to meet the needs of my new body.

       

      However you choose to view your symptoms is your preference, whether positive: a new opportunity for growth, a sign from the universe of your life purpose, or neutral/negative: a bump in life, a limitation, leaving you feeling completely unmotivated and hopeless. 

       

      I still honestly view having MG as limiting very frequently. However, my perspective took a shift when my grandfather, an artist like myself, advised me to watch the following TED Talk: https://www.ted.com/talks/phil_hansen_embrace_the_shake?language=en. Phil Hansen inspires the audience to embrace life’s roadblocks as positives by sharing his experience of being an artist developing a physical hand impediment. I recommend it as a watch for anyone feeling a heaviness due to the changes they have had to adjust for MG, especially creatives!

       

      I will love to hear your thoughts on the talk if you find a moment to view it and reply. To everyone: what hobbies have you let go, modified, and discovered since MG began impacting you?

       

    • #16159
      Michelle Gonzaba
      Moderator

      When I was first diagnosed, I immediately regretted everything I didn’t do when I was fully able to. I’m sort of lazy, so pre-MG, I took for granted how easy it was to do most things. Now that I’m in remission, I always try to keep moving around. I enjoy riding my bike, walking, running (more like a slow jog), and Zumba classes.

      Like you said, we can view our symptoms in either a positive or negative light. It’s taken me a really long time, but I’ve finally decided to look at MG in a positive way. It has made me really grateful for what I have and what I can do and to try as many new hobbies as possible.

    • #18133
      Patricia DeMore
      Participant

      Thank you for the TED link. Inspirational. I needed that!

    • #18145
      Douglas Manning
      Participant

      What a great read! My approach has perhaps been a little simpler. My family often jokes that I am too optimistic and as a result, I may on occasion “overshoot the mark”. Regardless, I wake up each day imagining what is possible, not what I cannot do. To that end, my family and I have taken the plunge into researching our family story. We’ve had our DNA testing done and it has launched us on a fabulous adventure of discovery. So, on a day when other things may not be possible, I can log on to our chosen ancestry searching website and discover a few more facts about our family! Sometimes, it’s just for a few moments while I’m resting waiting for some muscles to rebound, or it can be for the better part of day when I am getting an Apheresis treatment and Soliris infusion. Either way, it is focusing on what I can do and what is possible. One thing I’ve learned through this hobby in searching for my family history is that this amazing family from which I’ve come from is that in every generation are examples for me to follow of people who focused on looking at each day and looking at what is possible to do on that day. And it’s given me the motivation to walk a few more steps, swim a few more laps, and even say one more prayer.

    • #18162
      ANITA A. TARLTON
      Participant

      I’ve always had lots of projects going on.  I like to sew, cross stitch, cane chair seats…. the list goes on!  I am still doing most of those things,  though for a good 18 months I couldn’t.  I was shaky (didn’t work to “embrace the shake” too well. But mainly I was too weak to do much.  Slowly,  I began to pick back up my projects.  I had to re-learn a few skills, and made a few modifications.  One day, I went through a box of things I was going to do ” someday”.  I decided I did have to do all of them.  Decluttered a bunch of stuff.  It was liberating!

       

    • #18163
      ANITA A. TARLTON
      Participant

      I’ve always had lots of projects going on.  I like to sew, cross stitch, cane chair seats…. the list goes on!  I am still doing most of those things,  though for a good 18 months I couldn’t.  I was shaky (didn’t work to “embrace the shake” too well. But mainly I was too weak to do much.  Slowly,  I began to pick back up my projects.  I had to re-learn a few skills, and made a few modifications.  One day, I went through a box of things I was going to do ” someday”.  I decided I did have to do all of them.  Decluttered a bunch of stuff.  It was liberating!

       

    • #18164
      ANITA A. TARLTON
      Participant

      I’ve always had lots of projects going on.  I like to sew, cross stitch, cane chair seats…. the list goes on!  I am still doing most of those things,  though for a good 18 months I couldn’t.  I was shaky (didn’t work to “embrace the shake” too well. But mainly I was too weak to do much.  Slowly,  I began to pick back up my projects.  I had to re-learn a few skills, and made a few modifications.  One day, I went through a box of things I was going to do ” someday”.  I decided I did have to do all of them.  Decluttered a bunch of stuff.  It was liberating!

       

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