How many times have you found that you were viewing yourself as, predominantly, a person with a disease? Have you ever forgotten that you are a multi-faceted human being with talents, interests, desires, and abilities? How can we prevent ourselves from losing our identities when it seems our lives revolve around doctor appointments, pharmacy trips, limitations, breaks, fatigue, pain, helplessness, and relying on others for assistance?
It’s natural to feel bogged down and powerless when it seems our desires are at odds with our bodies’ abilities. One way to fight that is to ”steal back” your joy.
Do activities you used to love, just modified to your current physical needs.
➢ Love walking in the park? Find a bench in your favorite section and enjoy the scenery and the people around you.
➢ Miss taking your grandchildren on grand adventures? Create an adventure in the safety of your home using your creativity and imagination. Hint – blankets, a few chairs and a flash light made into a fort (complete with a chair for you to sit in) are a kid’s delight, especially if you add spooky or kooky story-telling!
➢ Unrequited movie lover due to an inability to sit still for long periods of time? Consider a subscription to Netflix, Amazon Prime, or Hulu so you can enjoy movies in the comfort of your own home. They are pretty reasonable in price and while you can’t see movies just released in the theater, some of them show up pretty quickly.
➢ Wish you could still travel and walk up and down the streets of quaint little towns? Join the local library and borrow photo journal books and cultural music CDs from far-away places. Coordinate your meal to match the book you are reading. Have a French Provençal, a Spanish Tapas, or a Bollywood Feast while listening to the region’s music and discussing what you saw in the book.
➢ Yearn for the days you could paint for hours on end? Gather some painting supplies and a small, manageable canvas. Limit your time to a reasonable amount for your strength and endurance (30 minutes? One hour?) and paint your heart out – unrestricted by idea, limitation, or fear allow your feelings to pour onto your project. The most beautiful art pieces in history were fueled by life experience.
➢ Consummate storyteller? Recall being the life of the party? Start writing for fifteen minutes a day. It doesn’t matter what. Keep a journal or start a book. Give your thoughts, your stories and emotions life through the power of the written word. Writing about your journey with Myositis can be therapeutic for you and helpful to others who are newly diagnosed. You can even share your story with the world right here on the Myositis Support and Understanding website.
And, if you love to write, consider writing for us! Does research interest you? Let us know! Be a part of the change we propose for 2015 by helping to educate others about our rare disease.
There are so many more examples, but that would take all the fun out of your adventure. The you that you “used to be” is still in there just waiting to be embraced and released! When you take time to adapt your prior passions to your current situation you will find yourself happy in spite of your illness. You will remember your value and worth. Do this for you!
Originally printed on Myositis Support and Understanding's Blog here (2015). All Rights Reserved.