Lupus and the Modified Normal

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.

4 comments

  1. Sheneka says:

    I too can relate,and have chosen to enjoy my good days and suffer the consequences. I had a great day on last Thursday, and decided to spend time with my mom while running errands; as a result, I haven’t been able to do much of anything due to fatigue, nausea, and aching.

    However, I have come to the realization that lupus is a horrible disease, and it affects us all differently, both mentally and physically. I say this, because I have been there when I’ve felt like visiting my sister who reside in another state is not worth the pain and/or fatigue that my body endures because of the visit, or attending a familyfunction.Through the years of living with lupus, I have learned that regardless of what I do or not do, lupus will stick up its ugly head whenever it choose to, so, I have chosen to enjoy and live life as best as I can. For the last 3 years my husband and I have been going on a cruise, and ohhhh do I pay for it with my health afterwards, but it is worth to me. Last time it took me over a month to recover, and even during the cruise I may not feel good, but I look forward to it every year.

    • Kellie McRae says:

      I know that it is about balance, sometimes you feel ok, its well worth the potential pain and other times you think, nope, not going to happen. In the end, like you said, its going to rear its ugly head and sometimes you missed out on the fun only to once again still find yourself highly fatigued or in pain so let’s get the love in, let’s have a few smiles and then we will just do what we know will have to be done when lupus rears its ugly head.

  2. Jean says:

    I understand but with Lupus sometimes it is not just about paying for it tomorrow but your body just won’t work/go. Sometimes there are extenuating circumstances like it is flu season and going to a family gathering could put you at risk for a serious infection. Other times pushing your body means lowering your immune system leaving you at risk of sickness and possible hospitalization. With Lupus it is not just as simple as pain. It can be debilitating pain along with whatever organ is being attacked.

    • Kellie McRae says:

      Hi Jean, you are very right in what you say but that is where good judgement comes in. If it’s flu season and your family is aware of the health issue, they will often warn you and not want to put you at risk. Those are times when you stay home. I don’t necessarily mean push yourself beyond your limits sometimes it’s just getting there. Doesn’t mean you go every time but it also doesn’t mean saying no every time either. I was sharing how I come from an extremely active family (health nuts I think is how you could describe us) lol Fitness competitors, dancers, etc and they slow down for things I can do. We had an outing at the park where the adults sat on these large wooden covered swings and blew bubbles and just laughed and talked, this was just so they could spend time with me. I truly understand that sometimes we pay in ways many can never understand but so do our families, they love us and really want to try to make memories with us as well. Self care is paramount but I know for me an unequivocable no across the board is out of the question, I will go sometimes and other times I will not but that depends on the activity, how I feel when the day of the event happens and which family members are involved (because let’s face it, not all family is supportive). So again, it’s a judgement call but I think you suffer if you say no to everything even if its not by the hand of lupus.

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