Less of a dick

It has been so warm this winter (relatively - in the 40's and 50's) that the trees have begun to bud and the sparrows are building nests. Strange things for a strange winter.

It is official - I DO have the typical lupus joint pain now. I'd not noticed it before because of all the Prednisone, which is commonly prescribed to soothe the inflamed joints. So yay, as time goes on, I become more and more the typical lupus patient. I wonder what it was about the kidney failure that kicked that part of the disease in. I've had lupus for years but never the joint pain until my kidneys failed.

Luckily, the joint pain usually sticks to a sharp ache, though I've had a couple of days where it genuinely hurts. I tell Jesse, awed and amazed, that I don't know how he lives with even a modicum of this everyday, as his joint and muscle pain is 10 times worse.

My lupus board has posed the question about how relationships and lupus affect each other. There is SO MUCH to say on that subject that it is taking me a few days to organize what I want to say about it. I know the first couple of months, even knowing that both of us were going to stick through this, Jesse and I argued over EVERYTHING. There was nothing that couldn't spark a heated discussion between us. We fought so much that I was considering couples counseling, fer Christ's sake.

I was desperate and fighting everything that came my way, even if it was good for me. He was desperate and panicked that I might accidentally hurt myself with anything that came my way.

Funny, that. I think the biggest damage I did to myself was the cutting, of which Jesse has no control over. Neither of us were thinking that would be an issue, though, let alone something we'd have to face.

SIDENOTE: What the fuck is it with cats and plastic bags? I swear, it's the loudest sound one can be inflicted with in early mornings. Oi.

But somewhere along the line, we both let up the pressure and now we almost never argue, and even rarer are the arguments about lupus and treatments. I want to examine that more, to see what made the difference.

I was telling him last night that I don't believe in things being spiritually arranged ("right place, right time", etc). I dislike the idea of my role in the Universe being reduced to a piece on a cosmic chessboard, to be moved into position by some invisible hand.

But it is something along Fate, or else extreme luck, that I landed someone who also has a chronic illness. David could never have handled this. And Pat, who would have tried, could probably not also handle all this. Jesse, having his own chronic illness, not only can handle it, but understands it. His support comes from, at least in part, a true empathy, because with the pain, the fatigue, the anger and confusion - he went through that, too.

It has its downsides, as there are days when neither of us have the spoons to do much for each other and we are left somewhat to our own devices. But overall, what I have is someone who gets it. WHO I have is someone who gets it.

I was not always the nicest about his illness before I got sick. I would get frustrated - even angry - that he was sometimes unable to go out, or to do certain chores. Now? Now I get why that taking the flight of stairs down the to car is equivalent to having 50 pounds of bricks land on you. Now I get why certain ways of moving can knock out body parts for hours, if not days.

I mean, really, I was kind of an asshole about it all. Then ***I*** got sick and VIOLA, I understood. The human condition - to not be able to place yourself in someone else's shoes until you, yourself, are wearing those shoes, too.

So I was a dick then. I'm less of a dick now, at least when it comes to chronic illness. That's progress.

This entry was originally posted at http://quirkytizzy.dreamwidth.org/1049069.html
I think one thing that makes the difference of someone you're with in being able to handle something like chronic sickness is when you got someone who's a mentally independent person. If you already don't have the full contingent of a hundred spoons each day, you don't have the power to take of somebody who's actually physically able to do things, but refuses to do so, is insecure or is used to being treaded like a child still.
I don't know how people do it that have children and a chronic disease, what troubles come ahead if that is the case and needs to be mastered as you can't draw back out of that situation; but you really can't have somebody around you daily which does the stunt of playing the snowflake that needs you all the time and can't do anything alone.
It sucks your batteries completely empty that have a tight limit anyway and that energy level you need to get along with also for your own issues in addition.

Edited at 2017-02-08 06:15 pm (UTC)
Well I HAD my illnesses while I was raising my children but did not KNOW what was going on or that I had any issues. I always thought it was my own inadequacies as a parent and father.
Well, in the phase you don't know you got something in the cup that's not natural to all other people, you live just as you think you need to and as it's best in your view. So there can be no minding it in a realistic way. At most, you rather tend to think it's some personal flaw and that you're not trying enough, just as you say it.
After knowing what's going on, I don't know how people do it, as you can't take a back seat if it's your own children, they still depend on you, even if you're sick in a constant manner. I imagine it's always not too easy, depending on the character of your kids they can even exploit it that you're not as fit like a healthy person. And if that's the case, there needs to be someone to stop them and show them their limits they can move in - which can be exhausting if you already have to fight with your own physics daily.
But with kids I have a different regard for it, as kids are just kids, they also stop behaving like that when they're grown up, potentially. Grown ups that behave like children still usually don't stop behaving like that...