Monday, July 8, 2013

Lupus: Spoon Theory

As I am coming to terms with having Lupus Nephritis, I am trying to understand what I am going through. I am also trying to have others try and understand as well. A great quote to put everything in perspective: Never compare your journey to someone else's. Your journey is your journey and not a competition."

Below is a video of the "Spoon theory", content created by a lupus patient named Christine Miserandino and read by a fellow Youtuber. Christine has a site called "http://www.butyoudontlooksick.com/" and has some pretty good information on lupus


My take on the Spoon Theory: I think it is a great way to describe to anyone how it is to feel sick but not "look sick". I've been "sick" for 2 months now (they believe I got this back in May) but I believe that I may have had a less intense form of lupus since January (looking back at joint pain, past kidney results, fatigue, hair loss, etc).

Before ALL the medication, I was tired. Very tired. But I could function if I pushed myself. Now, with the medication, I am being able to relate to the spoon theory a bit more. Do I have 12 spoons? Do I have more? I don't know because I always tend to push myself too hard and not slow down. I am nauseous ALL the time, yet I am hungry from the steroids. Sometimes eating helps, and other times, it doesn't. I feel edgy. I am fighting headaches. I am just so tired, all the time. Yet no matter how tired I am, I close my eyes and my brain won't shut down.

I know that my body is adjusting to all the medication and that I will not always be like this. I know that there are "flare-ups" that make some days worse than others. I think the hardest thing that I am trying to come to terms with is that my life that I knew was stolen. I can't just pop out of bed, grab my toddler and start my day. I found a great facebook support group called Lupus and Me that has been really helpful. Again, bit by bit, and day by day.