A few things having Lupus has taught me

It’s been just over two years now since the flare that landed me in the ER and finally got us all thinking “something is wrong” triggered the Lupus diagnosis. Luckily for me, I didn’t find out just what I had before I attended our denomination’s annual meeting, at which, I spend many hours standing, talking, and walking. Just back from the 2011 meeting and having slept soundly in my own bed for the first time in a week, I took the morning slowly and realized that having this illness diagnosed has helped me with many things:

  1. It is not a character flaw to be tired. It is, alas, human.
  2. It is wise to listen to your body–even if it means missing the things that you cherish.
  3. There are days when the body must lead, just as there are days when the head says “tough it out.” Both need to be right at times, for your physical, mental and career well-being.
  4. Trust your friends and family who tell you to sit down.
  5. Airplane travel is evil.

Okay, Lupus didn’t teach me that last one. That’s just my general understanding of the way we travel these days. It hurts to sit in strange ways for hours on end–whether you have Lupus or not.

The bells of the church behind our house are ringing out noon time right now and I can honestly say I’ve done very little. But it has been a productive little. I’ve had coffee, checked in on FB, and visited with two of my daughters (the other still is in her vampire cave). Last night I was not much more than mush. And when I woke this a.m., I was only a little bit more than mush. But right now, fortified with toast and rest and a littlebit of FB love, am feeling like I might be a functioning human being.

I thought I was going to have to go in to work today. I still may, but the thought of being a body at rest today is winning. And I’m letting it. Soon, too soon, I’m going out into the world to buy my daughters new swimming suits. I’m not sure that this short bit of respite this a.m. will carry me through that, but am sure the rest of the day will.

Even though I go to our General Assembly in work mode, I always learn a lot when I go through my interactions with really fantastic people. And some less so. I’m grateful for the opportunity that is my life. The people I know through work are amazing and brilliant and compassionate, as are the people in my family who love me through it all–and all of them carry me when I feel like mush.

Having the diagnosis of Lupus, I now recognize when I need to be carried (Lord, not physically–that could hurt someone!), and I even sometimes recognize when others need me to carry them. These are gifts. Lupus is not the gift. But there are byproducts of having this thing, of recognizing vulnerabilities and limitations, that allow one to be gentle with oneself and with others–especially after one has been less than gentle out of sheer exhaustion.

This dance I’m doing now is a new one, and I have not yet mastered it. There are many things I’d like to do that I have not yet been able to do. And there are many things I wish I could “undo” that I have done wrong or in a fumbling manner. But who am I to expect perfection from myself or anyone else?

As I write this, I must also remember that I have been diagnosed wtih a mild form of the disease. There are people out there who suffer more acutely–for whom the activity of the last several days would not only be strenuous, but impossible. And I hold them in my heart and mind as I ponder my next tasks.


About TinaLBPorter

I write poetry and blog at www.tinalbporter.com. And I'm thrilled to be writing with you.
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