This Lupus Life

I am the dancer and Lupus is my music. I want to make it look beautiful

Two Days: ….Thursday

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Today I woke up feeling terrible. I had not been able to find a comfortable sleeping position. My body was aching all over. My feet insteps were cramped. My legs felt bruised all over. My arms were too havy to lift and my hands were clenched in claws. You can say I was feeling the worse for wear.

My alarm had been set early to give me time to pack up Wardog again for another evening on the water, but today I use my time more efficiently to slowly make my way through a simple morning routine. Get dressed in a shirt and pants. Nothing that requires buttons or buckles. No time for make up or a nice hair-do, as it’s already taken long enough to get this far. Grab a bag of nuts, some fruit, brown rice and already boiled egges. Lock the door and drive to work.

The toll for some fun on the water is a day of rest. I am in good spirits all day. You see the pain is semi-self-inflicted, not a sporadic event. Arthur never leaves, he just hangs back. This is him reminding me he has a say. Just like yesterday, when I reminded him that I am the one in control. The pain goes after lunch and the afternoon gets better. I spend sometime planning to do my laundry.

When you have a bad day no one understands how you feel or how to help. They just take it in and work around it. When you get better they get even more confused at how you could be how you were, and how you now are. Hell, even I don’t understand how I can do what I do sometimes. I just know that either is possible and to take advantage of the good times.

Which is why it should not surprise you to know that this afternoon after work I am felt much better. So good, in fact that I didn’t  do my laundry, I went for a ride. Just 10km’s. Not too far, but enough to know who’s boss.



Author: Chevron Spots

I am in my mid twenties and fighting my battles to discover who I am and where I fit in to this zany, beautiful world. I was diagnosed with Lupus in in 2008. This takes up most of my focus, as I want to share the experience of trying to live with and rise above chronic invisible illness, so to speak. I would like to stress very much the information regarding medications, medical procedures and illnesses are discussed from my point of view, and with my understanding, colloquialisms and metaphors. I do not attempt to be legally and precisely accurate for the general population, rather I try to be emotionally and descriptively true to my experiences. I hope I can help in understanding others with chronic illness by providing one more personal recount of just how spontaneous and difficult these lives really are. One day I hope to visit every continent, climb some pretty high mountains, sleep in an ice cavern, marry a wonderfully understanding man, have children and teach more children. Mostly, I just want a simple life, you know the house with a husband and kids. Oh, and no pain.

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