The Mutiny of Self-Care

Medical Update: As usual, I should have listened to Dr. House. Because it seems like it really isn't fucking Lupus.

(not yet)

(...pretend now that mysterious, ominous music plays in the background...work with me...I'm trying to create a mood here, people....)

Now my liver panel has returned to normal. Miraculously. And without explanation.

Because really my body likes to play these practical jokes. Just to have a bit of fun, I think. Keep things interesting. I am totally NOT complaining. Having a liver biopsy is NOT on my bucket list. So, I am happy to skip that. It seems that the cause of the hepatitis will remain unexplained.  I will now commence getting better.

Here's the anti-climax bit to getting this news: I really felt like absolute crap yesterday. Worse than I did the day I went to the ER in the first place.

The thing about chronic, unexplained illness, is that you really get in your head about symptoms: It gets to a place where every bruise you have, every pimple, every dizzy spell has great diagnostic significance to you.

"I have a mouth abscess? But that is typical of lupus patients!...I wonder if this this visual disturbance is due to damage to the myelin sheath of my occular nerve...Oh, wait, there's an eyelash in my eye..."

I am not even going to go into telling you how helpful it is to Google things.

That is why people suffering from chronic, diagnostically difficult illnesses are always such assholes when friends, in a genuine spirit of helpfulness, offer up various illness their relatives have had that sound similar to what we have, or tell us about all the potential complications to medications,which, in desperation or blind faith, we are taking.

We already Googled that, folks. We're just forging ahead anyway. Gotta trust the doctors, because what else is there to do?

Please, don't answer that with a suggestion about blue-green algae, or I will be forced to take your life with my bare hands.

Anyway, I was telling my dad about all the horrible symptoms I have and it dawned on me:

This is a description of extreme, incessant exhaustion.

Perhaps, I just got sick and had to resume my normal activities before I was really ready, resulting in the fact that I am falling down tried. Could it be as simple as this? Looking in the mirror, I see a version of myself looking utterly haggard, with deep, dark circles under my eyes and pale skin. I just look tired.

Maybe I'm not dying. Maybe I'm sleepy.

Anyway, I was directed by my husband to stay home from the trip to Bernalillo and rest today, to try and recover. This is how this is going: I woke up at 7:30 anyway, came downstairs, drank coffee, lest I suffer the horrors of a caffeine withdrawal-induced migraine, figuring I'll go back to bed after, but I can't get sleepy. I can hardly walk a straight line, I'm so tired, but I am not SLEEPY. FUCK. I have cooked brown rice and frozen it in bags. Boiled eggs. Made shopping list. Kitchen is all fucked up now. Sent email. None of this is physically exerting. Maybe I can go to bed now?

When I wake up, my kitchen is going to make me cry. There are costumes and Halloween make-up strewn all over my living room. My mom has my little one, and I feel guilty that she does. I should let her bring him home. There are two bales of straw on a ten by ten plot of horse manure sheet mulched for next year's permaculture experiment. I need to wet it down and spread the straw. I have to shop tomorrow. I have to plant 200 tulip bulbs because it will be too late before I know it. We have to clean the house.

It takes a lot of will power to go back to bed, despite every trash-talking voice in my head that's trying to make me get up and clean the kitchen.

Do you know, do you really know how HARD it can be to do what people call "take care of yourself"?

It just rolls right off the tongue, but it feels like an act of mutiny.

Where is the Mason-Dixon line between a self-realized, empowered woman who models caring for herself and a selfish, self-involved, neglectful mother and derelict, needy wife?

Between a vibrant, happy mother- member of a multi-generational family, letting a grandmother involve herself in her children's life and a selfish, self-centered grown child, taking advantage of an older woman, never having time to give back to a mother who needs her?

These are the questions that keep me downstairs, scrubbing the fucking kitchen when I feel like I am going to cry from exhaustion. That generally keep me from calling my husband home from work when I am having trouble standing up long enough to make dinner, and I know coming home early means he has to work late from home later.

Taking from others when they never have enough to give themselves either.

I don't do it for the martyrdom, I do it for the peace of mind. Because I would rather be boiled in a vat of hot oil than feel like I let my family down. I hate exhaustion. But I hate guilt even more.

I guess that makes me one mentally deranged woman, but I bet I'm not the only one.

Here's my compromise: I get to say what is true for me. Into the public world. As an act of faith and beauty and truth. If I can't give the world as much time or money or help as I want, I can give it my words, as a mirror of what's in my heart and mind. Whatever makes me laugh, or cry or think.  I get to be true to myself. Publicly. Wear what I want. Say what I want. Be who I really am.

And, after I have sat down to do that for half an hour, I will go back to taking care of what the world needs from me.