When living with a life-threatening, chronic illness it is very (repeat VERY) easy to get ahead of yourself, to worry about the unknowns and to fear the future. Perhaps mingling in the knowledge of what lupus can do and has already done in your life, may have accelerated those thoughts for you. For me it has. I feel like the past ten years have been spent wondering how long it will be before something terrible happens again, which irregular heart rhythm should I take seriously, and are they damaging my heart?
How long will I have before my lungs require oxygen?
Will the continued muscle weakness and joint inflammation completely debilitate me?
Will the immunosuppressants lead to a life-threatening infection or cancer?
When and where is the next big hurdle … ?
On the other hand, I often wonder can this be turned around? Could I start having more good days than bad? What can I control in a disease that is so unpredictable? The answer is simple: my thoughts, reactions and attitude can be controlled and have completely shaped the way I feel each day.
This summer, after struggling with heart and lung inflammation and GI issues, I became aware of my destructive thoughts. Even though I thought I had my stress under control and was living in a neutral frame of mind, I realized that I wasn’t really “living”. My mind had trapped me into the belief that my lupus stood between me and the “go-getter” I used to be, and because I was caught in this riptide of “where is this all going?”, I couldn’t free myself of its hold. When I discovered how this internal dialogue was impacting my well-being, I stopped and acknowledged it. Okay, yes I know I am gradually getting weaker, and many days are very difficult and no, I can’t predict the future, but knowing that too allowed me the opportunity to take advantage of and appreciate today. That is the gift of which I speak.
I started this change by writing myself a message across our bedroom mirror, “RULE #1: Don’t get discouraged.” Flares and new health issues are frustrating, but strip the emotion out of the picture, control your reactions as best you can and accept that it is part of living with lupus. By its very nature, the disease can be scary, but dwelling on it doesn’t make it less so.
Staying right here, right now, is a gift that you are not only giving to yourself, but everyone around you. I now try to make the most of my days, accept the need for a nap instead of fighting it and embrace new possibilities – I’m actually seeking them out! Since this new awareness, I have been pursuing life-long dreams and taking control of what I can in life, while I can.
Shortly after this enlightenment, I wrote for and received a Legacy Grant from the State of Minnesota to research and create a room-size exhibit inside the original Immigrant Waiting Room of 1892, in Duluth’s Historic Union Depot. Tapping into my educational background, with double degrees in studio art and education and a minor in art history, along with the years I worked in galleries and museums, I was able to stumble upon the perfect fit – so perfect that I can work from home in my pajamas most days! Within a couple weeks, more opportunities were knocking on my door and I had to pick and choose which ones to tackle. Life is funny; when you open yourself up to its possibilities and trust in yourself, new doors simply open.
This holiday season, when looking for gifts for those you love, think about today – the present, how you use your time and talents and how your thoughts shape your beliefs. Perhaps the gift you are looking for is right in front of you.