Do your worst first

Ever have one of those days where your to do list seriously outweighs your energy level? Well, thanks to Lupus, that describes most of my days. I'm so grateful my Mom taught me to do my worst first. I'm also grateful to Lupus for pounding the lesson home.

You see, on those kind of days, it really pays to do my worst first. I go through my list of to-do's for the day, select the one I'm dreading most and tackle it while I still have the energy to do so. Then I work my way through the list, always doing the worst of what's left first, thus saving the best (easiest) task for last.

By the end of the day, when I'm winding down, all I have last is a few 5 minute jobs that match my waning energy level. Now, my Mom was one smart lady. But I bet she didn't know how much she'd be helping me later in life when Lupus started pummeling me.

But here's the thing. Even if you don't have Lupus, or another chronic illness, my Mom's advice is relevant and useful. Because, let's face it, who wants to do their heaviest, most physically and mentally exhausting task at the end of the day when they're worn out? And who wants the mental burden of having those difficult tasks hanging over their head all day, bringing their mood down?

As you might have guessed, I'm having one of those days. Thus, the thought prompt that caused me to share this with you. And so, thanks to Lupus, I'm now off to do my worst. First.

Redefining the "D word" treat

Enough said?

When you decide to have your favorite treat after being good for a long, long time and it backfires on you, maybe it's time to start redefining what a treat is. Oh, Lupus, you are so good to me. You even remind me that treats aren't really treats. Because the long term effects of eating badly become instant Karma for those of us with Lupus.

Yesterday, I bought my old favorite taco flavored chips. You know the brand. Starts with a D. Yup You guessed it. They were delicious, I admit. A true guilty pleasure, at the time of consumption. Not at all vegan, either. I feel like shit for that. Plus, I overindulged a bit. Now, if I didn't have Lupus, it would have been a normal serving. But with Lupus, half portions are a necessity. So, a normal serving is too much for me.

So, last night was not a treat at all. In fact, it was such a bad night that it had me Googling (Sorry for the TMI) but it had me googling foaming vomit. And as it turns out, these particular chips are famous for that particular symptom.

Gross!

Lesson learned. What may appear to be a treat and what actually IS a treat in both the short and long term sense are two different things, yes?

But it's not just the one thing. Is it ever, with me? This experience really got me thinking. What other treats aren't really treats? What other long term symptoms am I giving myself when I overindulge or even just plain indulge my taste buds?

The long term health effects of consuming junk food “treats” are overwhelming aren't they? But some treats don't just harm the body, they harm the mind, the spirit, the soul and yes, sometimes even our relationships with others.

For instance, we ran into some family members last night and I was so sick that I couldn't even carry on a conversation. Not a treat. Not at all. For them or me. My stomach was rolling hard. And I probably hurt their feelings because, of course, I'm not going to burden them with my pain.

But that's not all those “treats” do to us. Thinking deeper still, there is a huge environmental impact, unnecessary resource usage and harm to human and non-human beings as a result of their production. Wow, just wow!

Yup. It's time to redefine the word treat. Because destroying myself, other humans, other animals and the earth is not my idea of a treat.

I'm lucky I have Lupus. Most people don't get an instant Karma reminder that junk food is bad for you. With most people, it builds up in their system until they keel over from a heart attack or some such. So, thanks for the swift kick in the gut, Lupus.

You are loved.

Here's to guilt free living

OK. So, the title might sound a bit selfish if you don't know me well. But one of the very best things Lupus has brought me is permission to give myself a break from guilt. Those who know me well, know that I constantly try to better and one up myself. Do more. Clean more. Get more accomplished. To which I am starting to stay, “Enough is enough! I'm not superwoman!”

Luckily, Lupus came along to suggest that sometimes, doing better means giving myself time for the really important things in life, rather than trying to do it all and feeling guilty when I can't.

Feeling responsible for “fixing” every little thing that happens to everyone I love and care for is ridiculous. After all, I'm only one person. I can't possibly do it all. Besides, the real fix happens when they learn to stand on their own two feet!

Empathy is one thing. Taking responsibility for absolutely everything and everyone around you is quite another. I'm done!

My house is far from dirty but still, I no longer feel guilty for that one unwashed plate sitting next to the sink or the fact that it's been 2 weeks since I dusted. The dust bunnies will still be there tomorrow. And it's perfectly OK to sit in my bathrobe for an hour or so in the morning, working up the energy to... well, work.

I am vowing to no longer feel guilty when the grand-babies cry and I get a good night's sleep. I had my turn at sleepless parenting nights. It's someone else's turn now. I need the sleep with this illness raging through me. But even if I didn't, I won't always be available. It's time to let others grow strong through their own experience and struggles.

And yes, it's hard to hear them cry. But if their parents don't have another option, they'll be OK, right? Of course they will. Because they love them every bit as much as I do. Problem is, I am too quick to step in. It's an easy out and what parent doesn't need an easy out sometimes? I know I would have jumped at the chance to have an hour of quiet when I was raising mine. LOL

Naturally, I will still be there to help occasionally. I'm not a monster. Just maybe not every time, you know? Because kids need to learn to rely on their parents. And how will that happen if Grandma is always their “go to” comfort zone? It won't.

Lupus is good for me, you guys. I'm too much of a helper. Been that way for far too long. I've paid my dues, so to speak. There's no reason I should feel guilty for not feeling guilty. Because, how crazy is that? And yet, without Lupus reminding me that I'm not the be all, end all fix for everything that happens around me, that's exactly how it would be.

So, thanks, Lupus. For giving me “permission” to live relatively guilt free for the rest of my life. I earned it and it's time for me to focus on healing and happiness. I don't need to be a hero to show my love. In fact, thanks to Lupus, I now see that it's actually just the opposite. Letting other people solve their own problems is much better for them and much more loving.

Bye bye guilt, hello helping myself and allowing others to do the same. I earned that shit and I'm embracing it!

Thanks for the alone time, Lupus

I know. Some of you socialites out there might interpret this as a bad thing. Alone time might be lonely time for you. For me, it's just the opposite. Due to my antisocial nature, Lupus gives me the alone time I need to regenerate. It's something that I never really got before I was sick.

You see, in addition to being antisocial, I also feel other people's pain and suffering more deeply than most people. Not bragging or complaining here. It just is what it is, Which, of course, necessitates that my problem solving and worrying extends to them. My over-thinking, over-analyzing brain really gets a workout around other people.

So, when Lupus keeps me up all night, I rejoice for the alone time. Not only that, I sleep most of the day the next day. Which means I miss everyone else's struggles for a day. Then, the next night, guess what? I'm not tired. I slept all day. So again, I get a few extra hours of alone time while the rest of the house is asleep.

I can't do housework or anything else remotely responsible because I'd wake everyone up, so there's another bonus. I get a break from being that person who takes care of everything that no one else wants to do as well. Ahhh, alone time. What a multi-faceted joy!

And it's OK, you guys. It really is. Even if the reason that I'm up all night is pain. I have found that if I focus on the benefits of Lupus, I'm a much happier person than when I dwell on the bad stuff. I'm also, by getting the time I need to rejuvenate, a lot easier to be around when I do have to socialize.

Guess what else? Being up all night isn't the only way Lupus gives me alone time. You see, I pretty much have to stay home. OK, so maybe it's because of a lot of extreme unpleasantness, disgustingly horrid symptoms and the general personal unreliability that Lupus causes. However, as I mentioned, I was way too reliable before anyway.

So, while all the healthy people in the house are off working or living their lives, I get to be alone. Oh, by the way, don't stress about me. I have days where I feel well enough to have fun too. But I never, ever have to go to work, unless you count housework. So, I spend most of the day in forced retirement.

And yes, I get bored and tired of being so wracked with pain and so physically limited. Of course I do. But like I said, the secret is to focus on the good things Lupus has brought me. Like the ability to take it easy without guilt, when absolutely necessary.

I'm working on not feeling guilty about taking time off when I'm feeling well. That responsibility thing is deeply ingrained in my soul. LOL

So, anyway.... Thanks, Lupus. For giving me time to just be alone with my own thoughts and issues. Because goodness knows, those are overwhelming enough without adding anyone else's to the mix.

I never said, I was perfect. Just grateful.

One step at a time to the max

The other night, Gary and I were discussing all the many, many things we still have to do to our fixer upper. He says for me not to worry, of course, because he's a great guy. Then he says, you know, we'll just do it one job at a time. I laugh. Because I have no choice of course.

Ha! When you suffer from chronic illness, pretty much everything is taken one step at a time. Including steps. In fact, I'm pretty sure most things have to be done that way. At least they do in my experience. Plus, there are the little issues of needing to rest more often and just plain not being capable of doing everything other people are.

You guys, one of my hands is now literally a claw. My fingers are curled up like their natural duty is to grasp branches. What the heck am I supposed to do with that? Not much, as it turns out. Can't scrub. Can't pull weeds. Can't even push my hair out of my eyes some days.

But hey, there has to be a benefit, right? This is the Lupus love blog, after all. I have to find some reason to be grateful. So, here it is. I have a perfect excuse to not do the things I can't do. Unfortunately, most of the time, that's more annoying than it is a reason to rejoice. That's because I've always been kind of a workaholic. Getting it done is who I am.

So, though it may not seem so on the surface, there is a hidden benefit to having a claw for a hand. I did spend a lot of years doing everything. And I've still got a lot on my plate. So there are some days when my forced laziness is something to be happy about. I get to rest, guilt free. Which is something I've never done before.

Now, if I could just get the other people in the house to take over all my duties before the whole house falls down around us.

Oh well, one step at a time. LOL

I wish people were like Lupus

This wheelchair is in my near future, you guys.

Still, I don't complain about my illness much and for good reason. It challenges me. It keeps me humble and it also teaches me what's important in life. It feels my pain. It empathizes with me. I do, however, have a complaint about people who have no such appreciation of their healthy lives.

I get up early in the morning with a smile on my face. Every day. I listen to the birds singing and feel so lucky to be alive. When it rains, I breathe the clean, moist air in deeply, rather than complain that I can't get outside. When it snows, I watch the flakes fall with admiration for their beauty. There is so much to live for. So many happy memories to make. So many awesome people in my life.

And yes, I also struggle.

I struggle to get in and out of the bathtub. I spend hours sitting on the toilet, not by choice. (Sorry for the graphic picture in your head.) I struggle to go up and down the basement stairs to and from the laundry room. I do all the housework, despite having extremely limited mobility. I crawl if I have to. Git 'er done. LOL

I have watched my young, beautiful body morph into something I'm not even sure a mother could love. I look in the mirror every day and see someone I don't recognize as myself. My hands are transforming into claws, my face is puffy and distorted and my limbs are so inflamed that it appears I am fat when I'm actually not. My skin has no elasticity at all. It just hangs there, taunting me because I know I'm stuck with it, no matter how in shape I get. It's not going away. Ever.

Sometimes I don't sleep all night, due to the overwhelming pain. Instead, I pass out in my recliner from sheer exhaustion during the day. But only after I have taken care of all my responsibilities and quite a few of everyone else's. I am determined to be an asset, not a liability.

When people ask me how I am, I don't burden them with my hundreds of horrendous symptoms. I use the times when I don't feel well to make sure everyone else is doing OK instead. I am sincere in my concern for others. I keep an open mind and an open heart, despite my limitations.

But unfailingly, unfailingly, you guys, someone always comes along to ruin all the enthusiasm for life I have worked so hard to maintain by bitching and moaning about some inconsequential matter.

I am literally sick to death of young, healthy, vibrant individuals complaining about every little detail of their lives. It pisses me off. There, I said it. Ya, it pisses me off that these people do not appreciate what I would give anything to have.

I can't work. I can't eat properly. I can't walk up a flight of stairs normally. I can't sleep. There is not a minute of my day that is not filled with pain and suffering. I look like absolute shit. None of that is going away. None of it is within my control. None of it. And they're upset to the point of losing their tempers over the tiniest problems one could imagine.

Oh, poor you, your favorite coat is in the wash. What? That's just horrendous. You're out of milk for your cereal? Perish the thought. You have no time for yourself? What a shame. Join the club. Because in case you hadn't noticed, no one else does, either. And some people have your kind of struggles on top of being sick on a permanent basis. I'm one of them, but I'm not the only one by far.

In other words, suck it up buttercup, life is not a bowl of cherries. Everyone struggles. There are people who don't know if this is their last day on earth and you're screaming mad because your socks don't match? Get over yourself. Get on with life. Slap a smile on your face and appreciate the fact that you're healthy, would you?

Every day, I am thankful that I am not one of those people. I am thankful that Lupus has shown me that pettiness is a moot point. But ya, I'm still livid over spoiled, self centered, perfectly healthy people who don't know how good they have it.

Appreciation. Get you some!

When sick is normal

You know, at least, as I've said before, Lupus is good for a laugh. It cracks me up when people ask how I am. Not in a rude way or anything like that. It's just that when sick is the norm, one simply does not know how to respond to that question.

So, I generally just literally laugh out loud (I'll explain why in a minute.) and say something like, “Meh, I'm OK, I guess.” Because no one wants to hear about anyone elses aches and pains and it's the polite thing to do.

But, if I were to be dead honest, to the best of my ability, it would go something like this:

“Well, today, it's just my usual overwhelming daily pain, whereas, yesterday, I had exploding diarrhea and the day before, I couldn't move my hips to get out of bed., so I guess, in comparison, I'm dandy.”

But of course, I'm not going to say that. It's rude and I'm not. Hence the laughter at the thought of it.

There's something else that makes this all amusing to me too though. Something else that makes, “How are you?” a humorous inquiry when sick is normal.

It's that I couldn't answer that question accurately, even if it was polite to do so. Because, you see, I actually have no idea how I am. Ever.

When you're chronically ill, you can feel perfectly “normal” or even much better and not be aware that your body is secretly plotting your destruction behind your back.

You can also feel like crap and have all your tests come out the best they ever have.

Now folks, I get it. Really I do. My loved ones, friends and even acquaintances who politely ask about my health and are just concerned. I appreciate it. I value their friendship. I do. More than you know. But when sick is normal, “How are you?” is just such an ironically hilarious question.

I know. Funny/Not funny. But me? I choose funny over desperate, desolate and whiny. Because, let's face it, when sick is the norm, those are pretty much your choices.

I hope that I never lose my sense of humor, no matter how normal sick becomes. And thanks to the twisted chuckles I get from Lupus, I probably won't.