I’ve never been much of a rule breaker, but I’ve always loved to push the boundaries in the most positive ways. In 21 years things haven’t changed all that much, except that now I play by lupus’ rules and, regardless of the fact I’ll forever be facing consequences, I’m pushing boundaries – but they’re no longer just in my head.
In my mind, good is not good enough. If there is a standard, I want to be well above it, and sometimes even that doesn’t make me happy. At university, I don’t want to coast; I want a high distinction grading (80%+) in every unit. And even if I get it, I still chastise myself and think I could’ve got closer to a perfect score.
I like to spend that extra bit of time on something or with someone. I’m on this earth to use my time wisely and I live by the mantra “quality over quantity.”
If I’m traveling I want to see that little extra attraction, no matter if I have to walk another mile or climb set after set of stairs. I used to just do it without a second thought. These days everything requires second-guessing, wondering if just going out in the sun or expending a little too much energy will have repercussions, and how bad they might be.
In November, I wrote about how I was scared that lupus would stop me. Stop me from working when I finally got the opportunity over the summer tourist season. Stop me from saving to travel, the one thing I’m looking forward to more than anything. Stop me from enjoying summer.
But as summer has hit, I’ve begun to work longer hours and feel the effects of the harsh Australian sun. I realized my anxieties were misplaced. It’s not that lupus will stop me, it’s that there will always be consequences for trying to live a normal life.
I’m coming to terms with the fact that I constantly will be facing the consequences of my illness.
I’ve always lived a life I’ve been proud of and I can’t bring myself to break the habit now. I want to be outside, in the sun and the heat, with friends, and for as long as I like. I can still do all this, but I do it with the knowledge that it’s counterproductive to my condition.
While I know that pushing so hard will lead to me crashing and burning the following day, I can’t just sit back and watch life continuously pass me by.
I always will have to choose my battles, but more often than not I feel as if I would rather spend tomorrow exhausted — with the knowledge that I took the leap — than feel okay and chalk it up as something I wish I had done.
It is smart? No, not really. It is going to change the hard fact that I’m always tired? Absolutely not. But, in my old age, will I look back and note all the things I could’ve done but didn’t because of my lupus? No.
In my lifetime, I’ve slid down waterfalls, flung myself off cliffs and surfed waves most people wouldn’t have dared. I will spend the rest of my life, more tired than the average person, and probably more tired than I need to be. But I’ll live without regret, standing up to my lupus and knowing I never held back.
My worst enemy is the illness that lives inside me, and while I have it, it does not have me.
My spirit is brave and fierce. I’m going to let it soar because I believe that is the meaning of this wonderful thing we call life.
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.
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