I’m about to go AWOL. Again. Off base without permission. I’ve done it before and I know that there can be serious consequences so it’s not something I recommend. I ‘ve followed the rules and stayed in step for so long , the rules are beginning to grate. I’ve never been a very good rule follower or one for regimens, so I’m not sure why I signed up for this. But the more I do of it the more it starts to rub me the wrong way , every written or given order, I feel my back get up just a little bit more. My spine starts to stiffen , and not in a good way. I ‘ve fought for so long, and done things so long “their way”. “STEP IN LINE SOLDIER!!” “SHOW UP HERE 0800” , suddenly my rebellious side just starts to splash a little further over then the canteen will hold. Some of the things they have taught me have really worked . I’m doing better. I have gotten better. But some of the things have pushed me so far in the other direction I don’t like the person I’m becoming. To tell the truth it’s left me laid low. I don’t like being that person , I’m tougher than that. Am I talking about the military? Am I a Marine suddenly about to leave my duties and disgrace my country? Am I a soldier about to leave base, and turn traitor? No, I only a warrior fighting lupus, and I’ve suddenly decided that after 15 years , that after seeing more doctors than you can count , taking more medicines than you can fit in a 5 gallon bucket, literally, and being not better , but worse, I’ve decided that I am not going to do this anymore. When the meds make you sicker than the disease itself. When the pills make you so sick that you can’t get up off the bed for days on end. You can’t care for your children or family. When the IV treatments they promise are going to really put you over the top, turn out to cause you to have blood clots and maybe a stroke and seizures and who knows what. I’ve decided I’m going off base. What are they gonna do ? Throw me in the brig? I’m paying the doctors after all. Quite a hefty sum at this point. We figured up the prices the other day. After insurance , we figure our part of the bills that we’ve paid has been well over 100,000 dollars. Meaning I’ve had a million dollars worth of medical bills. I have heart failure, lupus carditis, Raynauds, Sjogrens, fibromyalgia, osteopenia,POTS, and now some type of stroke or seizure condition.I am 34 years old. I am not meaning this as like going cold turkey which I know can be dangerous, so please DON’T EVER DO THAT. I ‘m telling you don’t cold turkey your meds. I’ll tell the crazy old quacks, I do not want to do this. I mean I just have GOT to give my body a break from this chemical firestorm. So that’s the story of a tired old warrior. I’m going to rest for a while.
(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/
Just because no one complains , doesn’t mean all parachutes are perfect. ~ Benny Hill
Do you know anyone with a perfect life? Or someone whose life SEEMS to be perfect? I’ve met a few people like that. You see the shiny varnished outside of their lives, and think, “Man. Why can’t my life be like that?” They just seem to have it all together , don’t they? The perfect house, children, job, spouse, clothes, vehicle, etc. , etc. You run into them at town , in the checkout line and they are picking up the ingredients for cookies for their kids , on their way to a ball game, looking impeccable in their totally matched outfit, with the bag that just “goes” with said clothes. Or, you’re reading on FaceBook about how they’re sewing their child’s costume for Halloween while baking two pies, and of course they take a photo with their iPhone of them in their coordinated hair and makeup, in their spotless kitchen , with their Colgate bright smiles. Meanwhile, I’m in my living room , on my sofa, in my sweats and workout top, (workout top ~ meaning, I worked out, walking from the sofa to the bathroom, without passing out) thinking I am perfectly coordinated all right, my lupus is coordinated with my fibromyalgia, my heart failure is coordinated with my nausea, it’s all coordinating to make my life a nightmare , at the present moment. UGh. But, then, I kick myself in the rear, and remind myself, that just because these people SEEM to have it all together, does NOT make it so. FaceBook is the Hollyweird of the everyday set , if you think about it. Not saying that everyone or everything that people post on there is fake , but a lot of it is “airbrushed” , so to speak, in order to show our best sides to the world. So, I’ve gotten to where I just have to tell myself, I am alright where I am. My kids are happy, healthy, and doing well. ( And on the days when I’M not well, they’re ALIVE…..:) And I’ll remind myself a little more often, I think, that just because no one’s complaining, doesn’t mean all the parachutes are perfect!