With Lupus you never know what any given day is going to bring you. You never know if it’s going to be good or bad so you just take it one day at a time. Roll with the lows and take advantage of the highs. I have been doing great lately but recently I overdid it and I hit the proverbial “brick wall” of fatigue that is so common with this SLE disorder.
I was having one of those I feel great and can do it all kind of days, and decided on top of everything else I had done (housework, Christmas shopping, laundry, dinner, etc.) that I could squeeze in time to wash my bed comforters. I have my own washer and dryer but the big triple loaders at the Laundromat are mega fast and fun to use so off to the Laundromat I went. Ok, Ok, the machines aren’t fun to use; it’s totally a time thing. There is something so relaxing about being in a Laundromat in the middle of the day. It’s warm, there is a lot of soft machinery noise and it smells wonderfully like April Fresh Downy. I thought at the last store I had been at that I felt like I was slowing down but I dismissed it.
After I loaded the comforters in the washer and started the machine I felt the horrifying fatigue and malaise. It hit hard and fast as usual so I quickly sat down in one of those cheesy blue plastic body forming chairs; you know the 70’s retro type that are in one line attached at the bottom by one long piece of metal? I am thinking this can’t be happening now! I just got back from a trip to Kentucky, spent hours in the car, endured hotel stays, started working out again, Christmas shopped early, and had the tree up and decorated the 1st weekend in December and have been FINE. But I did it all in preparation for this: an unexpected flare, frigging PERFECT! *drips sarcasm and grits teeth*. Well there goes my Martha Stewart image for the day!
I put my head in my hands and cried. There was a Hispanic family near me that noticed, began talking real fast in Spanish (undoubtedly concerned about my tears) but I didn’t care – the tears kept coming. I cried through the soak cycle and wash cycle, sniffled through the extract cycle and was finally was somewhat tear-free by the tumble cycle. While all of this was going on my Blackberry was beeping and buzzing the latest texts, emails and facebook stories of the day against my forehead (I had it in my hands when I sat down). I tried to answer texts from my friend Tamura and get the eye make-up that ran all over off my face with my sleeve. I was supposed to be going to gym with her later and meeting a new trainer but knew I had ‘blown’ it, he would have to wait until another day. Fan-freaking-tastic! I have been fine and seriously?? I am having a meltdown in the middle of North Carolina in a Laundromat for Pete’s sake. I wish I was not such a type-A personality. I set the bar high – too high.
I wonder if the Hispanic family judged me. They looked like they felt terrible but could apparently speak no English. There was no way for me to let them know I was sick The lady at the last store I had shopped at prior to the Laundromat was rude and assumed I was walking slowly down an isle just to piss her off. She couldn’t wait to briskly walk by me and give me a dirty look. It wasn’t her fault, she judged me and had no Idea my energy was declining due to a disorder that causes fatigue. I myself pretended I wasn’t slowing down why should I expect her to understand?
I wonder how many people judged Michael Jackson because he always had an umbrella held over him in the sun. It wasn’t their fault that they didn’t know he had been diagnosed with Discoid Lupus and even a touch of sunlight on his skin could be harmful to him. Or maybe they laughed at him because he wore a mask outside; not knowing that the Lupus causes our immune systems to go so out of whack that even getting a normal cold from someone could turn deadly. As for Michael in the wheelchair, he most likely was suffering from terrible joint pain and was not too lazy to walk, just sore and fatigued. It is for these types of reasons that I don’t judge people.
If someone is going 90 down the freeway and cuts you off think possibly they are rushing to the ER for some emergency. Maybe the lady you see in Wal-Mart who appears to be on drugs and has been stumbling around shopping and then collapses isn’t on drugs but has cancer, has been given 2 months to live and wanted desperately to buy her last Christmas presents for her family herself (true story that happened to my friend Erin who was greeting at Wal-Mart to earn Christmas cash). Whew, okay my rant is over.
I am hoping that all of my friends and family members have a blessed holiday. Since I only get one shot at life and there are no re-do’s I am taking extra time this season to hold my daughters a little tighter, talk to my friends and family a little sweeter and love with my entire heart and soul. Merry Christmas
Peace and Blessings,
Julie
I'm so sorry. I read this at the exact right time. I'd let my daughter go to her dad's on an unscheduled day, Christmas eve, and she isn't even home yet, at 12:04am on Christmas, and now I have to drive to her sister's house to pick her up, even though I was assured she'd be home by 10pm. I have been furious all night. Now I have perspective. Thank you for that.
ReplyDeleteJulie - what a lovely post! Wise and sweet in one well-written package!
ReplyDeleteI have to admit, when I've been reduced to using my cane (hate it hate it hate it) and been shopping, and had that same brisk walk-by foul-face-shooting experience, I've dreamed of tripping the walker with said cane. I imagine the trajectory of their fall and the items they'd knock off the shelf as they tumbled, all in slow motion. It's really quite horrid, but makes me feel much better. ;)
I hope that despite the hiccup, you had a wonderful Christmas and snuggled happily beneath your fresh comforter, dreaming about your holidays!