I have this problem, a small thing really, but life altering all the same. You see I want to be there for the people in my life, even if that means I get pulled into a million different directions. Even if it means being pulled between two countries.
Normally when I feel stretched beyond belief, when I feel too many demands are being placed on me all at once, I snap. I say no, I get short . I run away to my own space. But sometimes you can’t do that because you are too worn out and tired to even think of doing any of it. So you just stay there, like roadkill and hope that somehow you catch a wave of passing energy, even if it’s just enough to say no once.
friends I’m tired of feeling like roadkill. Sure I know I’m mostly to blame for it myself. I know I try to be everything to everyone. I dont want to let anyone down or disappoint someone. So I do it all, I burn the candle at both ends, because that’s what it takes. And I try to snap up and steal energy as I go. Of course the reality is that I run at a deficit most of the time.
Do I have to do this? No, except I feel like I need to be there or helping out. I feel compelled to do too much and not because people are asking me to. And when people do ask, they always ask if it’s okay or assure men to okay if I need to back out.
Some of my logic, if you will, is that there are so many times that lupus robs me of this that when I can do I it all. Is this wise? No. Is this what most people do? Heavens I hope not because roadkill is no fun. But it’s where I go to because when I feel good, I forget there is a crash he just around the corner.
It was a small spider, no bigger than my thumb nail, but it was loose. Loose in my house. I had spotted on the ceiling, mocking me. It dared me to come and get it as it traversed merely across the room. Clear this spider had no fear.
I had decided to leave it be, mostly because it wasn’t where I could reach it and because it was too cold to set it outside. I guess you could call it an uneasy acceptance on my part, which worked fine during the day.
Night however was a different story. At night, as if by magic, that little spider grew to the size of a dinner plate. It grew massive fangs, long hair on its leg tangle me up. Every step it took shook the very house.
What is a girl to do with a magical spider like that? Someone told me to torch the place, but that seemed a bit much. Besides how do you explain this to insurance? So instead I spent a rather wide awake night, found the spider the next day and set it free. I was hoping it wouldn’t freeze, but it had to be evicted for both our sakes and my sanity.
If you have suggestions of ways to deal with these spiders, please let me know!
Beloved swept into the room as if he was above this all. He was just suddenly there looking great while I was stuck with basically small garden hoses and such coming out of my arms. My and let’s not omit that stunning piece of fashion known as the hospital gown.
If I had the energy, I would have wrapped one of those garden hoses around his neck until he turned a lovely shade of purple. Not to kill him mind you, just so he could blend in with the rest of us!😉
The fact he had come from one place and was stopping briefly to see me before he went to another place didn’t help either. I hate knowing that ere is a whole other world just beyond the hospital walls I’m stuck behind.
Don’t misunderstand, I know I need to be in the hospital at these times, but frankly seeing him so well and undamaged drives me up a wall. I have just the slightest bit of a jealous bone and when he comes in like that the bone grows to fill all my bones.
Yes friends I am jealous of his health and how he still comes and goes as needed. I know the truth is a bit different though. The truth is that these visits are torture for him too because it means that once again he is reminded and forced to deal with the fact im not nearly as well as I pretend.
it drives him up a wall that I’m not there. That this isn’t a quick fix. That our lives are run sometimes not by our wants or desires and instead by lupus. And mostly it drives him crazy to know there isn’t anything he can do other than visit and carry on.
So he breezes in and breezes out so as not to show too much of his hurt to me. And I, for my part, threaten to strangle him so he has to leave sooner. And we both laugh! Yes this is partially how we live with and cope with lupus.
I stumbled into the bedroom, flopped on the bed and for a few brief moments I debated just surrendering and giving in. There is no shame in giving in, not to the cold that was going around. After all several of my healthy friends had given in, but I’ve spent far too long always fighting against it.
The funny with lupus is that technically one’s own immune system is in overdrive, happily attacking the body it happens to belong to. This also means that it should be much harder for me to get sick with mere things like the cold. But to keep lupus under control I take medication to suppress my own immune system and so suddenly my ability to get sick is ever-present.
Now im going to be honest here. There isn’t a lot of good when you live with lupus, but one of things that is great is how you can make it through cold and flu season with nary a worry. While others are using disinfectants and such you can breeze through now all. For a moment you have a super power. But you can’t keep it, not if you want to live.
Sure life is about balance, and sure we can’t have it, but there are times that it would be nice to have my super power, with no strings attached!
While she was cutting my hair into her latest creation, my stylist was telling me about her children. She wasn’t pleased with them and it came across in the steady, sharp “snip” of the scissors. She would stop occasionally, telling me she needed to calm down before she got caught up in her anger. For the whole time she was cutting my hair, i had a wee bit of fear. This hair cut would no be a warm, soothing cut.
Now what is a person to do when your cut starts out okay and then your stylist starts becoming angry? Do you leave part way through, or close your eyes nd hope for the best? Given my schedule, I stayed and closed my eyes, not wanting to see potential carnage until it was over. Of course when she was finished it looked okay. It was different from how she planned to do it, it still worked.
I was taught that personal issues should never be brought to work. I had assumed t as so that you gave work your dedicated attention for the time they are paying you. But now I realize it can be for more reasons that. It can be a matters of safety for some lines of work. It can be a case of being emotionally well enough to be at work.
sure we are taught you work unless sick/injured, it as yourself, at what cost? If your mind can’t focus, if your emotions ar are l over the map, you well enough? Hopefully companies can ge behind this because it surely impacts productivity.
I want to believe I live in a world where justice is blind, but just. I want to believe I live in a world where equality is equal for all. I want to believe I live in a world where people are following ethical guidelines for making rules/laws.
Now and then I catch glimpse that this type of world is there, but all too often these glimpses are fleeting. It’s as if it’s just beyond our reach, it as long as we keep trying, as long as we keep striving forward it is possible to reach it.
Of course the proof that justice isn’t always blind nor just, is evident daily. I live in a culture where power and money, material items, all make a difference when justice comes in to play. I don’t suspect that most people want it to be this way, but there is enough data that if you look well turned out or hold a professional standing in this culture justice tends to turn into your favor and is kinder. There is, as much as people deny it, a color bar that comes into play with justice. There is a so a financial bar that is used as a measuring stick.
I live in a culture where I’m told employers are equal opportunity employers. This includes gender, race etc. but I’ve seen women hired as a token hirings, same with races. I’ve been told that all genders are equal, but we still have protests, rallies and such to try to grant equal rights for this. The fact we qualify or identify people by gender or race says that there is something of difference to be noted rather than realizing we are all humans with the same rights.
As for ethics, I live in a culture that debates what is ethical and how to compromise various ethical ideologies.
Now I can sit back and ale observations, or I can acknowledge that if I want to live in the world in believe in, then I too have a part to play.
There are some things make you wonder what the heck were they thinking when they did that. Things you just can’t fathom yourself doing, or perhaps any rational person doing.
one of the things I cannot fathom is the Victorian honouring of their dead. I can’t imagine how they decided it was grand idea to take photos of the dead, to use human hair as a frame for the photos, I just don’t grasp the need for that. Perhaps because I hold memories more dear and I guess because photographs are common enough these days.
i also do not understand the Victorian taxidermy approach either. Granted taxidermy and I arent anything more than nodding acquaintances. But taking dead rodents, posing them in various stages of action and dressing them up in basically doll clothes? Yes I cannot begin to imagine why that was seen as a good idea.
Beloved suggests it is because I don’t have a great deal of spare time myself so I can’t understand wha it would be like to need to fill that time, to find a way to entertain myself for hours n end. Granted hen hs a friend wh is in to toy trains big time. His friends as trains running all throughout his house, complete with wee towns set up and fields of toy cows to mired past as well. Again I do not understand this, but as Beloved pointed out, I do not have enough spare time to allow myself to fill up with these things.
if had spare time I’d fill it up with reading or coursework because that’s what thrills me I guess. Although I’m beginning to wonder if I would be granted special rights if I started to collect dead hamsters and such and set them up in various tableaux! Heck I’d grant myself special rights if I did this. Special rights to a long vacation in a padded room. Because it’s just not me.