I’ve been having a lot of interesting conversations lately on some of my lupus pages. Our current thread of conversations started with rashes. (Having a chronic illness leads to some weird conversation threads….) See the name lupus is generally thought to have originally come from the 13th century and stemmed from the red rash it leaves on the sufferer’s face , which some physicians seemed to think looked like the bite of a wolf. Now in this day and age of political correctness we refer to it as the “butterfly” rash so as not to offend anyone.( Another term for the rash, the medical one, is malar rash.) Well, we talked about butterflies for a while, and some of us do get the butterfly rash, and some of us don’t. ( I do.) But one of my friends, new to the lupie world, asked a very good question. She wanted to know , how come so many of us post butterflies for our support and conversation pages, when our disease is named for the wolf? I guess it kind of took me aback. I know the reasons we post the butterflies. They represent change, as in constant change of the disease we are fighting every day. They represent strength, the strength it takes to struggle and emerge from their cocoons in order to fly. The fact that though their wings look quite delicate , but are actually a lot stronger than they seem. And of course , they’re pretty. They also represent new life and hope in many faiths and religions. But then I began to wonder if maybe we hadn’t given the wolf a bad rap. I myself have had such a severe case of lupus that thinking of the wolf as my friend has not been necessarily my first thought in this fight. But perhaps I’ve had one of my best players “on the bench” .Maybe I’d been bringing a butterfly to a wolf fight so to speak. Wolves are scary looking animals. I mean they’re huge for one thing! , weighing anywhere from 80 to 140 pounds. They are fierce hunters , known in packs to take down even the North American bison. So if you think about having a disease named for something so aggressive , that can be pretty intimidating! But then I decided to do a little more research on it. I said to myself if I can use the wings of the butterfly to my advantage in my psychological war, I’m going to get some of this lupus vulgaris fierceness for myself too! Wolves as symbols are part of many cultures from all over the globe , but I suppose the most notable of them are the North American Native peoples. Just reading through the stacks and stacks of information on their histories could take a lifetime to learn about their amazing stories, but some of the ones that stood out to me the most were the ones that talk of the wolf as standing for “teacher”, “guide” , “strength” , “unafraid in the face of death” ,but also possessed of deep faith and profound understanding. I was very surprised. I think maybe people see the images of the wolf devouring its prey and think only of their bodies being consumed by this hideous alien disease. After doing all my reading today, I’ve decided to fly into battle on my butterfly’s wings but with a pack of wolves for backup. I think I can use some more teachers, guides,and warriors with strength unafraid in the face of death. Not just fierce hunters but possessed of faith and understanding too. Cause after all, when you’re fighting for your life, why leave your biggest, scariest looking soldiers at home?
(Today is Restful Wednesday! Or Nap Day. 🙂 No dressing up, or application of make-up required. I have decided that on Wednesdays I am going to have a day just to rest. I will do my blog posting and FaceBook early if possible, and not worry about anything but rest, at least for Wednesdays. Because,I have decided that my health is like that L’Oreal commercial, it’s worth it! If you are tired, this is a public event, so get your favorite jammies and join in. Find your special spot on the sofa, and let’s just take care of ourselves for one day! )
Fatigue. It is probably THE hardest symptom of lupus to explain to people. Yes, I know , everyone gets tired. We’ve all had those days where we felt like we just couldn’t roll out of bed. And sure, we’ve all had those days where we COULD roll out of bed, and just didn’t WANT to…….:) But what my non-lupie (those without lupus) friends don’t “get” is that the fatigue of this disease is SO much more severe than anything they can imagine. I know that might sound harsh, and you can say I’m exaggerating if you want, or being dramatic, but it’s the truth. There’s nothing like it. The only way I know how to explain it to those who care enough to ask, is to say , Imagine the worst case of flu you ever had. Remember how tired having the flu makes you feel. How just making it from the bed to the sofa in the living room is so exhausting you think you might have to call the ambulance. Got that flu feeling/memory in your mind? Alright. Now. Imagine that it NEVER goes away. That every day when you wake up this is the first feeling to hit your body. That no matter how much you slept the night before , you are still NOT rested when you get up. But stuff still has to be done doesn’t it? Housework, taking the kids to their activities, being a functioning human being….etc…. When you have the flu , it just lasts maybe a week tops, and people understand. They’re sympathetic. “Oh, you poor baby. The flu is so awful!” But , when this becomes your life, people are a lot less understanding, let me tell you. They really start to get that whole, “Well, we’re ALL tired!” attitude with you. “Suck it up.” I’m not complaining, really. I know there are people who are never going to understand. These folks are never going to “get” it , so to speak. But, I just wanted to write, and let everyone know. The next time someone with lupus says , “I am exhausted!” or they make their joke / not a joke about needing a day just for naps, you might picture a flu day in your mind, and understand maybe a little bit better…. There’s also an awesome story in the lupus community called “The Spoon Theory” that I sometimes give people to read when they really WANT to understand…….it explains it so well, you can read it here……..http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/
It’s Mother’s Day!
Hope you are having a great one. My husband gave me some money to buy the new denim skirt I’ve been needing. Plus, I got a pair of desperately needed “nice” sneakers to wear to church. My husband in his great wisdom has discovered it is MUCH better to just give me dinero and say, “Here. Buy something you need/want/like. ” Smart man. 🙂
In honor of mothers today, I would like to broach a subject that is close to my heart. The stay-at-home mom.
I am a stay-at-home , homeschooling mom of two. I know that in this day and hour this might seem to be a radical position to some. I have gotten a lot of criticism from folks who think that it is wrong or strange for me to feel like my place is in the home. This negative feedback mostly comes from “working” mothers. I put that in quotations because to assume that some mothers are “working” while others “stay home” as if it were a vacation is a very wrong assumption. ALL mothers WORK. It is what we DO. Please do not follow up my statement of , “I stay home.” with “You don’t WORK?”. If you followed me around all day while I am “just SITTING at home.” you would see.
I guess this criticism bothers me on a personal level because I make it a habit to NEVER tell mothers with outside jobs I think they are wrong for working instead of staying home. I would never dare to assume I know what is right for them or their family. It IS a free country, thank goodness. Everyone has the right to do what they feel is right for their own children. But, mothers who would raise up their voices in protest if I were to say such a thing and proclaim their rightness, do not seem to hesitate to tell me , “Why do you stay home?”, or “Don’t you get sick of being around your kids , all day, everyday?” , or even more offensive, ” I guess you don’t believe in women’s rights, huh? Are you a barefoot and pregnant kind of person?”
Why is their choice to have an outside job perfectly okay, but I’m in the wrong to want to do differently? Why is it offensive to them that I choose to stay home with my children, and educate them myself? Why is such a horrifying thing to “not mind” being with my boys all day? I guess I just don’t understand. Maybe my choices aren’t the same as yours, but I wouldn’t presume to tell you you’re wrong. We might be very different in our approaches, but our motives are the same…….to raise our children the best way that we know how. Live and let live. Just sayin’.