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24 Hours a Day in Lupus

By Venetia Thompson 

Venetia is the Vice Chair of the Philadelphia Tri-State Chapter Board of Directors and based in Delaware

This is the story of how life is played out in the mind of Venetia Thompson.

Who are we? It’s hard to tell. When days are measured by pain, trips to the emergency room, or having to constantly decline events with family and friends, it’s hard not to be defined by our disease. We painfully watch our mind and body battling over who is going to be in control. 

The mind says, “Today I'm going to start my day with a workout, get some wash done, plant my new summer bulbs, finish my current art order and then prepare a great spaghetti dinner with a hardy salad.

“Sounds reasonable”, says the body. Hence, you proceed with your day. Your workout is complete, make yourself a protein shake, and put a load of clothes in the washer. So far, so good. But upon taking a shower you notice that you begin to slow down. Your body says, “I think the schedule for today was more ambitious than what can be handled; I’m getting tired.” 

“Tired, the mind says, you’ve barely started the day! Okay, why don’t you sit down for about fifteen minutes and then let’s carry on with the rest of the day”.

Okay. After a fifteen-minute rest, you grab your straw hat and head out to get planting done. Your body struggles through each movement like you are working through a pool filled with Jello.

Your mind says, “Hey body, what’s wrong with you? You are dragging around the yard and taking forever!”

“I don’t know. I just can’t get myself to do what you keep trying to get me to do. I told you I was tired earlier, and you wouldn’t listen”. 

The mind, getting frustrated says, “This is totally unacceptable. You can’t stop yet; There is too much day left to do.”

The body, feeling useless, says, “I’ll finish planting the last of these bulbs and see how I feel after that.” Your joints and muscles ache to the point you can barely stand it. You’ve taken all prescribed medications for the day so you reach for maximum strength Tylenol, pop two, and sit for twenty minutes with hopes they will kick in quickly. “Just give me another minute the body pleads with the mind. I know you want to finish the art order because it’s on deadline, but I just don’t have the strength to get up”. 

“Oh, for goodness sakes,” says the mind, “You are absolutely embarrassing! How did I get stuck with you? Are you going to make me look bad, again? Our plans for the day were not unreasonable.”

The body agrees, “You are correct in stating the plans for the day were not unreasonable, but my energy is depleted, and my body pain is off the charts!”

I’m just going to have to find a couch and lay down for the rest of the day and my order is going to have to wait”.

Day comes to a close earlier than desired. The mind versus the body is over for this day with the mind having to accept the body’s limitations for the day’s agenda. Tomorrow, the mind will do more negotiating with the body to see how they can reach accomplishing getting everything done without so much pain. Will it be challenging? Yes, but doable!

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