May is Lupus Awareness Month. I am very thankful and grateful that my disease is mostly well managed. I am fortunate to have an excellent Rheumatologist that knows what to look for and is on my side to help me live my best life.
Lupus has no cure, and like other autoimmune diseases, it can be very unpredictable in when and where it will attack. Somethings I have resigned myself to live with; back pain, hand pain, and chronic fatigue. This is daily for me, but when I have a flare, the pain and fatigue get to be debilitating. This weekend I had to nap 3+ hours on Saturday and Sunday. I slept through things I wanted to do, should have done, and spending time with my family. To me, the hardest part of this disease is not being present for my kids and husband. Every day I have to make a choice where to put my energy. Some days my body says No to everything and everyone.
I am not writing this looking for sympathy. There are a lot of other autoimmune diseases that people have and are doing a pretty good job of hiding. I am writing this for understanding and patience for those of you that love someone with lupus or similar. They don’t mean to skip out on you. They want to be invited places even if they cancel at the last minute. Also, never take your health for granted. So eat well and get some exercise for your body’s sake! Take care of that healthy body, do it for those of us who’s body sabotages itself!