Lupus and the Modified Normal

When I was first diagnosed with lupus it felt as if my life was dropped on its head. Goodbye to my 17-year career of selling real estate and basking in the Florida sun. Goodbye six-figure income. Goodbye weekly exercise classes, and finally goodbye USA.

What was my “normal” is no longer. At times, I forget that I have lupus. There are days when I get up to cross the room, and my hip joints and knees are screaming. I will think “Man, I need to exercise more,” and then I have to laugh at the fact that with all the nonsense lupus does to your body, I had a moment where I actually forgot the cause of the pain I am experiencing.

I am a person who adapts. I step to the challenge and I find a workable solution. I grow and go. I do my best to share this outlook where I see that other people not having the easiest time adapting. Recently, I was commenting on a Facebook post shared by another butterfly warrior. She was explaining how leaving her home to visit family members caused her days of pain afterward. She said that from this point forward she was going to refuse to visit them.

I moved literally halfway around the world from my family for better healthcare. I left the U.S. and headed to Thailand. I would give anything to be able to get the level of care at the affordable prices back home that I get here, just to be near my family. Needless to say, her words hurt me. I wanted so badly for her not to deny her family her presence. As such, I suggested that perhaps she could visit and just relax while there, and avoid anything that would make her symptoms worse. Another fellow butterfly warrior decided that I was speaking from the outside.

This made me think about what I offered as a solution. The other commenter told me that it was easy for me to be on the outside and suggest that she pretend to be normal. Of course, I informed them that I, too, am battling, but it leaves me wondering what a lupus warrior thinks of as “normal.” The life we had prior to our diagnosis is gone. We must mourn it, and like any loved one, we look back and we miss it. However it is gone, and it’s not coming back. With that in mind, I consider this life, this lupus life normal. It’s a modified normal, but its what my life will be from now on.

I don’t really know anyone in my new home and there are days I go out and I pay for those days. I went to an event recently and I could hardly get out of bed this morning. Although I am writing this article from bed, the laughs and the conversations that I had, and the memories I made are all worth it today. Lupus causes pain. I could stay home, but then I’ll just be lonely and in pain. However, if I spend time with people who matter, I will have smiles, memories … and pain. Either way, pain is my new normal and I simply will not allow it to run my life. I will pay, but I will play.

I didn’t care for being told I was on the outside, just because I want to try to enjoy the moment, and spend time with family when possible. I understand all that comes with lupus is going to be here, but so am I. Maybe being on the outside of the thought that I can’t spend time with friends and family isn’t so bad after all. Will you join me on the outside?

Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lupus.