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!