An Interesting Question

Someone that I game with asked me a question a while back that I don’t think I’ve ever been asked directly before.  I guess that would be why I’ve never answered it directly either, and the question made me think about the things that people don’t understand about chronic illness.  It wouldn’t be the first time I thought about that.  I just began to formulate more relatable responses because of the question.

What’s it like living with Lupus?

The odd thing is, in the course of that conversation I don’t think I ever did answer him directly.  That’s why I’m writing here.  Anyone that asks me that question again can get a clear picture without me forgetting something I meant to say.

It’s waking up uncertain about how you feel every morning.. until you first try to move. It’s a life of roulette. You spin that wheel every single day, and sometimes more than once in a day, and you wait to see what the result is. It could be anything, and you have no way to predict it or control it, although sometimes you can manipulate and take a guess. Sometimes you may even be right. Sometimes you’re surprised and it was wrong. Some surprises are good ones, and others are bad ones. I bet you thought I was saying that the surprise was a negative, huh? Yeah.. sometimes you guess things will be going badly and they DON’T. Those are the mornings when you have expended so much the previous day that you’re just certain the payback will be hard. It isn’t always. Once in a while you get an early Christmas and get away with your risky fun. That makes a lot of things worthwhile.

Risk for the ordinary person is doing something edgy, like hang-gliding or skiing. Risk in most people’s assessment is going beyond average activities and recreation. For most, it is the attempt to defy limitations of grand proportion and it is an act to impress self and others with a feat of tremendous effort. When your life is closed in by smaller limitations, those definitions change drastically. If your world is the house, and maybe the yard, and the occasional trip to the store, then risk is a completely different arena. It now includes things like driving an hour or more, or going to the beach, or even spending a few hours or more in a large shopping mall. For most people with Lupus, going to the beach is in fact a VERY big deal.. and for some it is something they will never again enjoy. Some will risk it, and even pay for it later when they knew they would. Having Lupus, and learning to live with it, means redefining life. Adaptation is the only way that you both survive and thrive with it.

It is true that I could easily tell you that having Lupus is terrible. I could tell you all about the random nature of your capabilities, the varying levels of pain from annoying to horrifying, even incapacitating. I could tell you that it’s never knowing if I can follow through on an activity that I’ve agreed to, and having no choice but to change or modify my plans.. and how that affects others in my life. I could tell you about the endless Dr appointments, and fights with Drs that seem to know less about my disease than I do. I could tell you all the many awful symptoms that can happen without notice, and much, much, much more. Yes, having Lupus sucks. My life however does not.

In my life I have two wonderful, living parents who are both in their 70s. They go out dancing, and to karaoke, and sometimes I get to go with them. I have a cherished only sibling, my big brother, and his family. I have a niece that I adore, and she adores me back, even when I can’t see her as often as I have always wished that I could. I have had in my life a grandmother to whom I owe so much of my life, and her love stays with me even now that she is gone. I have had friends that enriched my life, even when they chose to depart for selfish reasons. I still love the time that I had with them before. I have friends now in my life that understand the unpredictable and scarey nature of what having Lupus is like. I have some that don’t, but they’re valuable to me too. I love my photography, my art, my culture, my videography projects, my jewelry making, my walks when I can take them, and every waking moment that I can experience something new or beloved. I have love in my life. I have people that mean life to me. I have a life.

Those are the things I choose to share on a daily basis. The rest is just my pesky routine that I have to deal with. If I can’t get up right away when I open my eyes, I have my mobile and I peer into the day my friends are sharing in Facebook if nothing else.. until I am ready to sit up. There may be days that I feel trapped in a subpar body, but it doesn’t mean I stop living because of it. It makes me appreciate smaller successes more. When something bigger comes along.. it is just that much better. I could say that having Lupus has made me a better person. I don’t really have a reason to be shallow. Every step of my day has great meaning.


About Tala

-Livestream Broadcaster - Active in Periscope & Busker -YouTube, Twitter, Instagram, & Facebook Pages Advocacy for better quality of life with catastrophic illness & injury. Conditions I live with myself are my awareness platform: rheumatic autoimmune & neurological, women's heart disease Traditional First Nations (Native American) -Training: Tai Ch'i Chuan, medical terminology, cultural Medicine -Avid about hiking, camping, & outdoor adventure Special Interests: Natural health, everything from East Indian to East Carolina cuisine, 16th Century German fencing Favorite Travel Spots: Yosemite, Catalina Island, E. North Carolina, Northern CA redwoods/coastal rainforest ~I live as naturally as I can, stay on a whole foods diet (as in what I eat, not as in "a diet"), avoid as many synthetic meds as I can, and do not consume artificial sweeteners and most preservatives. If you're curious about why, see my posts.~ Periscope/Twitter ID: Tala_NoExcuses

Posted on March 18, 2013, in I Am That Wolf and tagged , , , , , , , , , , , , . Bookmark the permalink. 2 Comments.

  1. Well said, Tala. I feel the same way. I can’t make long-range plans anymore, based on how I might feel that certain day. Will I be well enough to go to this event? I have a book signing out of town (not far) but I might not feel up to it then. Do I go anyway, and risk having a huge flare? I’ve learned to roll with the punches, as they say.

  2. butudontlooksick

    Point taken. Life is different with lupus, but it IS life. The sun still rises outside my window even though I can’t see it as clearly as I used to through my double black-out drapes.
    I still share in my son’s education, although most of the teacher conferences I have are now online! It’s all still out there, it’s just adapting to it.
    I love life today like I loved it yesterday, like I loved it many years ago before I had lupus. I don’t like the pain associated with the symptoms and damage lupus has done to my body but I’m still thankful for having this body.
    Life is good. Lupus has brought my path to meet many wonderful women online, some of whom have become close and special friends that I cherish. It is a gift. Each and every day. :)
    HUGS & Smiles, Julie

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