Hi, blog reader! May is Lupus Awareness Month. And I have lupus. So on Mondays in the month of May, I’m going to be posting about Lupus. To raise awareness. Because it’s Lupus Awareness Month. Here we go.
Let’s say you’ve been sick. You get back to work, and one of your coworkers says “We missed you this week! What was the matter?”
In a typical situation, you can say “I had a cold,” or “I had the flu,” and your colleague will know what you mean without your having to go into much detail. You say you had a cold, she knows you had a runny nose and maybe a sore throat. You say you had the flu, she knows you were running a fever, feeling achey, coughing and sneezing. She can commiserate. She’s been there before. She understands.
But what if you say “I was having a lupus flare?”
It gets tricky with lupus. Take a look at this list of signs and symptoms (or this one). The truth is that someone with lupus can, at any time, be dealing with all of these, none of these, or a whole mess of symptoms including these and a bunch of others.
I can’t tell you about what lupus is like for everyone. I can tell you what it’s like for me. So here’s what I mean when I say I’m having a flare.
I’m exhausted. Tired doesn’t begin to describe it. No amount of sleep will fill my cup when I’m having a flare, so I just do my best to aim for 8 hours and keep coffee always nearby. I don’t have strength to do much – it wipes me out to go up the stairs. I can’t hold my arms up for long enough to blow dry or style my hair. On flare days, I basically just flop around expending as little energy as possible (much like Paul Rudd here), counting the hours until I can flop into bed and wait to do it all again in the morning. (Read more about fatigue in this post)
My joints are swollen. I can typically tell a flare is coming when my right wrist locks up. I can’t bend it backward, I can’t lean on it, and I really only feel relief when I apply constant pressure with an Ace bandage. Once I’m in the thick of the flare, you can look at my hands and tell something is wrong – my finger joints puff up and turn bright red. Honestly, my hands look like they hurt. And they do. By the end of my flare, I’ll have swollen joints in my fingers, hands, wrists, hips, and ankles. I’m moving like a cross between a very pregnant lady and a very old lady. It’s not a good look. (Read more about joint pain in this post)
My face hurts. My cheeks are always a little rosy. When I’m flaring, that rosiness turns bright red and spreads through my cheeks, across my nose, and up over my eyebrows. The red rash is slightly raised and feels a like a bad sunburn – during a flare, it’s not unusual to find me laid up on the couch with a refrigerated gel eye mask* spread across my face (pictured so flatteringly at the top of this post).
I’m a grouch. My grab-bag of symptoms can dampen even the most buoyant spirit. I try to remember that snapping and brooding never made anyone feel better faster, but a flare can definitely wear you down.
And what causes a flare?
Well, it could be anything. Like all bad health-related things, the number one trigger is stress. Other triggers include sun exposure, too much alcohol, certain foods, too much physical activity, and drastic swings in the weather (I bolded the ones that seem to trigger most of my flares).
So – that’s what I’m saying when I say I’m having a flare. Like I said (and will keep saying), it’s different for all of us.
Lucky for me, my lupus is pretty well managed with the guidance of my doctors and the help of my family. I’ll talk more about how I manage my lupus in a coming post.
This is a great month to do a little googling and find other bloggers who are telling their lupus stories. My current favorite is Luck Fupus - her sense of humor is delightful and her honesty is refreshing and eye-opening.
If you have any questions about Lupus, I’m always happy to answer, whether it’s Lupus Awareness Month or any other month of the year. Fire away!