Feb. 20th, 2017

quirkytizzy: (Default)
I wake up insanely grumpy due to a terrible night's worth of sleep. I also must have knocked about my torso recently, because the broken rib that didn't hurt anymore hurts this morning. This is the kind of grumpy where you know if you don't go back to bed soon, you'll just wind up taking it out on those around you.

And Jesse doesn't need me getting all bitchy with him.

I found this post on my lupus boards and related to it so well that I briefly wondered if telepathy was possible and that's why this woman had written this post. Emphasis is mine.

"My version of lupus--in a history of health problems--is that everything is wrong all the time. I don't feel sorry for myself, this is just how it is. One complication leads to the next, to the one after that...it's exhausting. Full time work just doing basic maintenance on myself. Circumstances are such that it gets old, like me ;) Sometimes it seems pointless...always trying to get above ground without seventeen more dr appts, med adjustments or further conflict. I do believe life circumstances affect health, it's only logical.

People don't like to hear this. I am on a pain forum and every time someone gets really down people (well meaning) jump in and Happy Face over it, think positive yadda yadda. One day I said simply that I wish we could allow the topic of despair in the conversation without either whitewashing or making it a disaster. I got such a hostile response from someone I stopped writing there altogether. She started a thread: "Okay, here. Have your conversation. Go ahead" then went on about how hurtful it was to think like that, not to mention inconsiderate.

Not every situation is created equal as has been pointed out here. I was angry that no one even tried to support me--all in the name of "positivity". I wasn't promoting despair, just suggesting it be ok to express because it's hard enough in the rest of the world, or among people who can't understand the kind of relentless exhaustion pain or depression that steals days, months and years from my life with Lupus.

Experience has shown me no matter how well intended, this is not something easily accepted or understood. I don't want pity and especially, judgement. Nonetheless I run into it in endless forms, overt covert and everything in between. I'm a small person and have med sensitivities.

Through a series of unfortunate events and losses I have precious little but appreciate every ounce where I find it. I am a decent person, I can still laugh, I haven't thrown in the towel yet. But after decades of this, I'm not comforted by sunshine blown up my sorry arse.

I do not begrudge anyone else their happiness nor do I recommend my attitude. I don't mean to rain on anyone's parade and believe if someone has found more happiness peace satisfaction or acceptance it is a true blessing. I just ask that I be accepted, in all my curmudgeonly splendor, and not have to tie it up in a big pink bow of hope that doesn't feel genuine to me. I wish it did. Maybe one day it will be me talking about the choice to be happy and having a good attitude. But I doubt it will be anytime soon."


Lupus is not what caused last night's bad sleep nor is it contributing to the pain in my ribs. Lupus is not what broke the AC and thus we slept in a house that was too warm, leaving me to sweat buckets where, sometime in the night, one of the cats peed on the bed.

But fucking hell if it still doesn't remain the largest topic in my mind. Everything is run through the Lupus Filter these days, even if it has nothing to do with this damn disease.

And so I'm grumpy about it. I'm grumpy about the sleep, the rib, the damn A/C, the fact that I have FOUR doctor's appointments in the next two weeks and have to get on the line with Social Security, a guaranteed one hour, bureaucratic, red-taped hell of a time. All the while juggling bills and a specialized medical diet while at an income of zero, knowing that I can't even look for work, as I am still in very early recovery.

Today is the first day in nearly a week that I will be making a concerted effort to nap. Or rather, today is the first day in nearly a week I am not going FIGHT the nap. I am both resentful and grateful for this. Resentful because NOT napping requires such a powerful display of sheer will and grateful because at least I have a day clear of obligations TO nap in.

Cat pee on the bed not withstanding, at least.

Reading that lady's post does not make me less grumpy. But it makes me feel vindicated and at this point, until I can get in a decent nap, that at least is something.

Day 28 out of the hospital. It's fucking sad that THAT is the line of hope I have to hang onto.


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