Sunday, August 8, 2010

Quasimodo days and sleep deprivation nights

There are drawbacks to have something as complicated as Lupus (Systemic Lupus Erythmatosis) as a chronic disease/ illness process going on in the background of my life.

Traveling low level pain that never quite goes away is one of them.  A multitude of insomniac nights is another.  And let's not forget about the flare ups of things being worse than "normal" (which is SUCH a Relative term!) when I start getting stressed out.  Or when I eat certain foods, or over indulge in others, or under indulge in still others.  Or when I've spent too much time out in direct sunlight, and therefore have had an overexposure to UV going on.  Or when I have my rare moments of true RAGEHATE about something.

These mini "flare" days are the days that I've come to refer to as "Quasi" days.  The term was coined by my long standing friend Jon, in reference to the fact that I'm typically in so much pain on days like this that I walk around hunched over and snarling at everyone, reminding him of the classic portrayal of Quasimodo, the Hunchback of Notre Dame.

Over the counter medications and pain relievers do not even Begin to touch the pain on days like this.  Nothing does, short of Class 3 Narcotics.  I wake up on days like this, curl into a fetal position on my bed, cry for a few minutes from the agony that even the pressure of a light sheet over me causes and the fact that it doesn't matter how I lay/sit/stand/move - it's going to cause agony even to breath. 

And then I get up, and I get on with life, despite the fact that on these days, I would rather pick up a gun and put it to my own head and pull the trigger - because it would hurt less. 

It's not the emotional - I've learned to live with that.  I've learned to live with the fact that when I take part in half of the things I enjoy, I'm going to pay for it physically for days on end because I've induced a brief flare.  I've learned to live with the fact that I can simply no longer take part in some things that I love doing, because the flare will be so severe it will probably wind me up in a hospital for several days begging for IV painkillers.

I truly understand those who live with the unmittigated pain of cancer and other various terminal illnesses, and their desire to end their own suffering while they're still capable of thinking with some semblance of reason.  While they're still capable of reacting to life, at least part of the time, with something coming remotely close to basic human dignity.

And it makes me want to go on a rampage against those bleeding heart fucktards who seem to think that Life Is Precious, regardless of it's quality or lack thereof.  Against doctors who would rather force someone to stay in a broken, useless shell indefinitely.  Against families who selfishly refuse to let someone go when it's past time for them to go, and insist on keeping them attached to some fucking Machine in order to force their body to keep breathing, their heart to keep pumping, the nerve endings to keep agonizing.  Let them go.  Love them enough to fucking LET THEM GO AND GET IT OVER WITH.  Quit being a self absorbed piece of shit who's Honestly more worried about their own Brief mental anguish over the "loss" of a loved one.

1 comment:

  1. I can't understand how hard it is for someone with Lupus, but I experienced it vicariously through my mother, who lived with it for 20 years. Keep trying, and don't give up. The narcotics may be the only thing that takes away the pain completely, but they lead to a lot more problems than they cure if you're not careful. Thankfully, I just hit the psoriatic arthritis space on the wheel o' autoimmune diseases.