Hope, old measuring sticks, and other dangerous things

Let's get the serious post out of the way and maybe later I'll be able to talk about something less...lupusy.

Jesse and I will sometimes go round and round about how far my recovery will take me. About how much of my previous life I'll be able to return to, about how much energy I will or won't have in the years to come. He easily understands the "incurable" part of this disease. It is the "degenerative" part that he seems most troubled by.

As the months go on and I learn more about the disease and how it affects my own body, I can now track symptoms back to my early 20's, if not even a few years earlier. Granted, my kidneys hadn't failed yet, so they were merely tiny licks of what I have today, but they were there.

Add 20 years of no health insurance, no medical care, and an adoration for anything with the words "BACON AND EXTRA MAYO" and, well, 20 some odd years later, you have exploding kidneys. Yadda yadda yadda. All shit we know by now.

Jesse, Pat, and all of my doctors are amazed that my body managed over 15 years with some sort of active(ish) lupus before it all fell apart. They call it an astounding display of sheer willpower.

I don't use the word "willpower." I just state that I'm a stubborn fucking bitch and let it go at that.

But what this means is that on occasion, people mistake my past ability to live with lupus as a legitimate way to measure how well I should be able to live with it NOW (or ten years down the line.) I argue that it simply hadn't progressed to this level, therefore it was easier before and naturally will be harder now.

I also didn't know that this shit wasn't normal. I assumed EVERYONE slapped themselves repeatedly in the face to stay awake at 2 in the afternoon. I assumed EVERYONE spent days and days on end in bed with migraines. I assumed EVERYONE had strange bouts of body pain. Once I found out it wasn't normal? That it was actually HARMING me more than it was HARDENING me?

It suddenly paints those past decades of simply "fighting through it" as dangerous and ignorant. Over 20 years of "just pushing through it" is a huge part of what brought me here TODAY, into such a sorry state of body and mind. I damn near drove myself into the ground - six feet under - that way.

Why would anyone want me to repeat those coping behaviors??? Do they not see that what I was doing was literally killing me, and I am now in even WORSE physical conditions to be trying the same things NOW?

The measuring stick has changed. I don't like it anymore than anyone else does. I'd dare say that I dislike it THE MOST out of anyone. It is incredibly frustrating when people slap that old stick across my palms and want me to use it.

I think Jesse wants to hope. Hope is such a dangerous thing. I dare not place too much weight or importance on its shoulders. Call me curmudgeonly. Call me pessimistic, a nihilist, a negative thinker, whatever. But if this disease is degenerative (and it is) and I must not push my body to the breaking point (like I did), then I cannot just work and push and pull and "hope" it will all sort itself out.

Things are improving. While lower than ever before in my life, the emotional baseline is stabilizing. Despite record-setting setbacks, my kidneys are also chugging along at incredible rates of recovery, 70% operational now. (Or at least were as of a month ago.) Things could go wrong at the drop of a hat, but I am in far better a state than I was eight months ago when the shoe dropped onto my head like an anvil.

Maybe that's luck, or willpower, or blessed, science or stubborn. Whatever it is, though, it will never make this go away entirely. To suggest that I should or WILL be able to act as if it will go away is nothing short of dangerous.

And right now, the most dangerous thing I'm willing to indulge in is fried shrimp. Four now. Maybe another eight months down the line, I can have eight. That's not hope, but it's something.

This entry was originally posted at http://quirkytizzy.dreamwidth.org/1072269.html
The degenerative part on such a disease is by far the greatest gamble where you don't know what's coming out and when. This perhaps can also only be understood by people who know it from own experience. Or by people getting to feel how they grow older and powers fade away, never to return anymore because that point is passed where power is yours. (Can be people aged 50+; everyone gets it a little sooner or a little later.)
As just most people don't know it or have the idea of what it is like when you start with a minor thing and after years, before you reach the natural age to have problems with that thing, you have huge difficulties with that same thing. Like, when starting to experience limitations in sight or hearing and over the years it only grows worse and worse, with really nothing existing to stop the process. (Compared to people which can do laser surgery to get their eye sight back to normal.)

You're very right in that sense to say "I've been able to cope with that for 20 years without knowing, but only in the past, not in the present anymore" and there's a very natural reason why.
When being young, you can deal with a lot of physical hardships as your body's still in the mode to grow and regenerate twice as much as when you're an adult behind the peak in the phase where the body already slowly decreases its powers.
In their teen and early adult years, their 20s, human bodies are in their most powerful years, where they're able to take and do the most.
Those powers later decrease little by little, that's why people who have done a lot of heavy work or took drugs start to experience the first negative results of their past lifestyle. Simply, your body isn't the bursting hormone machinery anymore then that is able to cover all the damages without obstacles.

In that point you're right to be no bubbling optimist or to imagine miracles, that everything will go back to the way it was if you only let enough time pass.
Only thing you can put a little hope in is human bodies become a little lame in general over the years, so that means also such internal self-harming processes are subject to that.
At least they say so with Mutiple Sclerosis, with growing older the relapses shall become less and less (if your body sticks to that form of the disease that has relapses) because of the general aging process.

Edited at 2017-04-16 04:53 pm (UTC)