Full Body Dread and Sacred Pain

 I've written before about how we don't have enough words to describe exhaustion, and the same is true about pain.  I'd love to research how names for word colors evolved in various languages around the world, and there are some cool videos I've seen on it, but I can't remember them right now because of the pain that makes me wonder about it.  I can only guess there aren't enough words to describe pain because we don't want to see it, and god forbid if we do see it, we sure as hell don't want to remember it.  But clinically, it would be helpful to have more ways to describe pain to my family at least.  

They know I deal with pain all the time.  The kids and I deal with pain all the time, all day every day.  But it's not an "it", not a singular thing we share.  Our pains are different from each other and different to even our own.  Today I was bedridden by stomach pain of all things, not head pain.  The other day it was a neurological ear pain and that would take another while to explain, unless you dear reader have ever had it yourself or feel like googling it.  

And what the heck is even the word for pain that doesn't hurt per se, but accompanies the squeezing sensation, that which is the full body dread?  Not all pain is like that or has that, and it's not something anyone has ever asked me about BUT IT SHOULD COUNT FOR SOMETHING.  I pushed through migraine pain for years, probably a full decade once I was chronic.  And then today, the "painless" full body dread that accompanied the stomach pain of what I assume was abdominal migraine made moving from bed a dealbreaker until 4:30 this afternoon.  Thing Two is on meds and in the tub because her head hurts and also "feels like throwing up".  Her head feels like throwing up, like her brains.  *points to cabesa, los sesos*

I guess ideally we wouldn't need so many expressive words for pain, but it would be nice to have our existence validated.  By the way, fuck the song Silent Night.  Silent, calm, and sleeping in heavenly peace are bullshit erasure of the holy childbirth experience which are NONE of those things.  It's pain and blood and shaking and a life and death struggle that not everyone survives.  Looking away from pain serves no one.  Managing pain in healthy ways should be sacred.  

Pieces Of Flare

It's hard to make good words.  I've only had two migraine med days this first week of December, and if that trend holds it would make for the best numbers of the year!  But I'm becoming less functional which is of course infuriating.  *deep and lovely breaths as I search for and finally find the goddamn asterisk*  I guess, since Sasha is doing better and going in for her much delayed trigger point injection in two days, it's as good a time as any to ME/CFS flare.  I do hate that our household is such a complex machine with so many fragile and breakable parts.  This is a terrible design.  I object.

I lost my shit on the sperm donor who sleeps in my closet tonight.  Thing Two needs us to grow food and I cannot grow food.  It is beyond my energy capacity.  He will face my wrath and panic attacks if he can't figure out how to grow potatoes of any worth.  He will either prove his value by doing this thing or I will likely drive him out of this house and he will become homeless again.  May the odds be ever in his favor, amen.  Incidentally, he also still needs to do his 2019 taxes.  It's almost 2021.  We are not impressed with his complete and utter lack of initiative. 

I meditate a lot.  I'm not really sure how to manage a flare.  Another flare.  Every moment in time is new, a new physical place in the universe, and we have not much semblance of routine which is itself unavoidable and also taxing.  I just hope this flare doesn't get too bad.  I anticipate it won't [o god please] if I ice the relevant muscles, keep meditating, and try really really hard to not overdo things, knowing full well that I'm flaring again.  I...I just wish I weren't managing alone.

We live with my mom and my ex sleeps in my closet, so I'm not physically alone, but I manage ALL OF THEM regarding everyone's ailments and schooling and primary human person raising, and no one advocates for me.  I'm too sick to play music anymore which to put it mildly, is a total bummer.  And what generally keeps me going in life beside that is friendship and camaraderie.  So three strikes, I am way out.  For as helpful as having plans and goals are, this sure seems like a dead end too.  Like, what can be done?  Of the adults in this house, I am the NOT neurodivergent one, and the others seem to lack the ability to do emotional labor in the areas where I could sure use help.  They also refuse to go to therapy.  Oh fucking well.

I think when I quit the blog, I wasn't ready to put that into words, the fact I'm going to slowly wear myself out and then die early, sick, and alone.  Now that I've had about a year and a half of hell and torment to have that put into perspective, I guess there are worse things.  Like being a fucking disease spreading white supremacist anti-masker, anti-vaxxer.  I must go watch Schitt's Creek now, and rejuvenate what pieces of my spirit I can find.

Welcome Back To My World: Consider This Your Warning

 Holy shit, I started this blog eight years ago!  And I quit a year and eight months ago, but it seems like longer than that, with the state of things.  What an absolute tornado of clusterfucks everything has been.  It's a damn good thing I quit when I did, there is no way I could have kept up through:

The worst chronic fatigue flare I've ever had beginning in September 2019

The worst round of migraines plus chronic fatigue I've ever had in August/September 2020

Plague obviously

California fire season 2020 (SoCal is still on fire)

Both kids having more diagnoses, although hey hey, Thing One can eat wheat and corn now.

But probably best of all beside the fact that we still kick ass, is the fact that I have managed to wrestle control of the sperm donor's finances away from him.  Therefore he cannot gamble it all away and I have income once again.  Oh, but I have been on my period for two entire years now.  Follow up with the PCP is next month.

This word vomit blog has remained helpful as a resource to look back on, and unfortunately it may need to keep functioning that way.  For example, two days ago I had a distressing new symptom and I don't even know if it's migraine or ME/CFS related, but it's terrible ear pain.  It kept me in bed for most of the day and it's still coming back to occasionally stab me.  I've had migrainous ear related pain before, but not like this.  Thankfully just my left ear.  Also sometimes my left ovary tries to squeeze me to death, so that whole left side seems to be defective.

Oh but there is more good news.  My new music crush is a "Snarky Aussie Dude" named Emerson Brophy whose music includes but is not limited to U.S. political activism and the annoyance of musical theater nerds.  His music resonates in such a way that it measurably pulled me out of the despicable Aug/Sept 2020 flare.  I had 17 and 19 migraine rescue med days in Aug/Sept, and only 11 and 10 in Oct/Nov.  I mean, usually if I have a good month, I'll rebound but instead my numbers went even lower.  I was able to remember I was a musician and not be bitter, listen to other music and not get overwhelmed, and even start learning a new instrument although it's still mostly too exhausting to play since most of my energy goes to managing the rest of our drama.  So that has been an actual miracle.

Next up, Thing Two needs a miracle.  We retrialed her old migraine preventative that she lost in February due to plague, and it seems to cause migraine.  She's back off it but it took a good couple weeks to get back to migraine base line.  And then she's several weeks overdue for a trigger point injection because we thought we might have been exposed to plague so we had to cancel and reschedule.  (Turns out we weren't but we are DECENT FUCKING CITIZENS) So she is just in manage mode, much to the consternation of the State Of California who would prefer she be in Math Intervention mode.  When I told her homeschool teacher to just go ahead and withdrawal her from school, they backed off.  I actually said I was about six seconds away from withdrawing both kids who technically need math interventions, but we have other shit to work on.  And I love math!!!

Well.  I will go read and think about spacetime and hope it somehow oozes into the kids' brains,  listen to Emerson Brophy's new Christmas Song (it's friggin hilarous!) and think about strategies to get through the next few days, and the few days after that.  Welcome back into my world all five of you.  You've been warned.

ps. Fuck trump and everyone who voted for him, and every piece of shit human who won't wear a mask and maintain social distance.  Get your goddamn flu shot unless you're actually allergic.