Imagine side effects are your normal

 I want you to imagine you got a covid vaccine, and you get side effects: headache, chills, body aches, fatigue.  All you want to do is stay in bed and sleep it off.  Now imagine this is how you feel every day for the rest of your life: headache, chills, body aches, fatigue.  Only both your kids are also sick, and you have to homeschool them, and you have to constantly be on the phone with doctors, hospitals, schedulers, pharmacies, and insurance.  And if you want income, you have to manage your emotionally abusive ex-husband (who lives with you btw) due to his gambling addiction.  Don't forget your kids have severe food allergies, and one is autistic.  READY GO.

Now, this is why I NEED you to fight voter suppression, vote for universal healthcare, and universal basic income.  Thanks.

The Science Of Whimsy

 We spend a lot of time on the porch in the sun these days.  (We spend as much time as we can on the street in the rain too, there just isn't nearly as much of it.) Today for the first time I wondered if we would ever long for these days, before the kids grew up, when we would have tea parties and paint parties, singing and imagining flying through different dimensions, picking up fellow travelers.  God, it sounds so idyllic, which is what made me wonder if we'd ever tie nostalgia to a global plague, extreme social isolation, a potentially illegal sabbatical from high school, and of course never ending pain and illness management.  We've worked so hard to get here, it's only right we should enjoy it.  I hope we don't long for it though.  I hope this is truly a starting point.

Oh right, a starting point.  I'm well past that, having been on my period since Dec. 2018.  It has finally been established I have cysts on my ovaries and fibroids on my uterus, thanks to some god awful procedures about which I was not warned.  An MRI has been ordered for more details which will I suppose, inform the course of action.  My only concern is what effect said action will have on migraine.  Other than that, I have no need of any of those organs and they can yeet.  And wouldn't I love an end to the occasional pain that makes it impossible to walk, and radiates down my leg and across my back?  It's just so minor compared with everything else.

Anyway, I'm taking Child One to pediatric rheumatology on monday to rule out autoimmune things.  All the procedures this month have screwed with my migraine med days, so I'm glad that will be technically next month.  But of course, more procedures follow.  Anyway it'll be good to rule stuff out.  We'll still be stuck with an almost useless diagnosis of ME/CFS, but typically the fewer diagnosis the better.

I guess it's up to us to maintain the habits we enjoy, like spending time on the porch together.  Even if we never get the energy to write songs or publish books together or any other dreams we've dreamed, we have always enjoyed collaborating on silly stuff.  It takes an incredible amount of intentional whimsy to battle depression, as it turns out.  I know this is disjointed as hell, but I'm putting energy into singing! So I'm still tired, always tired, never not tired.  But music definitely makes things better.

An Old Diagnosis

 oh my god, fuck FUCK!  Ok, we are as prepared for this as we could possibly be it's fine, really it's not fine but it's going to be...well it's going to be.  Child One had a migraine and took nausea and pain meds and that hasn't happened in years.  But the good news is they worked. My unease lies in the fact he's still in the ucsf pediatric headache system because this is the way of things.  You have a family history of migraine, you present with abdominal migraine as a child.  It may even resolve for a while but you usually end up with some form of classical migraine eventually.  Child One presented abdominally at age 5, was extremely well controlled with meds somewhere into age six, was slammed again at age 9 with both abdominal migraine and ME/CFS, resolved somewhere between 11/12, and is now 14.  The pain is not considered chronic, he usually only gets head pain due to heat.  While that heat threshold is usually low, it's not usually 70 degrees low. Fuck.  FUCK.  Jesus, it's the middle of winter...

But ok, like I said, this is actually the ideal time.  It's the Sabbatical of Happiness, corn is no longer an issue so any and all meds are on the table, we are in the best place we've ever been in, plague notwithstanding.  And, AND!!!, I have fought the goddamn homeschool system in every direction with regard to Child Two and migraine and mental health so I am a fucking pro.  All the pieces are in place, I've updated the portfolio, and I know exactly who to call when the next appointment is needed if it's even needed.  And who are we kidding, now it's just a waiting game to see when it's going to be needed, and that is anyone's guess.  It's February and thanks to climate change and plague, it could be any time, it could very well be next week. In the before times, I'd say we had at least until August.

Speaking of Child Two, it's been a nightmare managing pain all the damn time.  T minus four days till the trigger point.  Although to be clear, both kids are singing so loudly I'm having to hole up in my closet to even write this.  😏We're so awesome.

Music is also pain

 I returned to music and it hurt like hell.  It's kind of like having a baby, that feeling of any pain being worth it.  I mean, it's not quite as extreme, and I didn't play any music for years because I had to take care of my actual children and manage all our illnesses.  Look, it's complicated.  It wasn't exhilaration either, playing my violin for the first time in years, it was more like, maybe regrowing a limb?  So maybe exhilaration was part of it, but that seems trite compared to the depths of what all was going on.  Which is probably why, like an idiot, I played and recorded an entire ukulele song the following morning and subsequently DIED, and will be playing nothing today.  I am however allowed to sing today and here is what's cool.  I first recorded myself singing (in this new era) on Dec 20, and I got a migraine from it.  My brains were getting better even tho I was still getting migraines but I kept singing.  I had six migraine rescue med days in December (down from ten in November), four in January, and even tho I absolutely abused my body the past two days and definitely took regular pain meds for it, I did not get a migraine.  Repeat, I did not get a migraine.

Also, I slept all night and much like playing the violin, I honestly do not recall the last time that happened.  We're talking over seven hours in a row.  It feels like a hug, like a really good hug from someone who knows you and likes you anyway.  Not sleeping anymore has really screwed up my ability to think straight and make complete sentences and stuff.  This is particularly bad considering the amount of medical details I have to chart and keep straight for all the appointments I have to schedule and keep straight.  I have no idea what happened either, I just stopped getting good sleep one night about three weeks ago and it's been on and off but mostly off ever since.  I'm mostly not napping either and if I ever do nap, it's brief.  I used to have a weird night of sleep every so often for no apparent reason, or if I overdid things that day, oddly.  My only guess is the long built up stress of plague and sick children.

Child Two is in so much pain.  Every day is just managing pain and it takes so much work.  We manage the shit out of it too.  Art therapy, baths, sun time, meditation, hammock and music time, finally therapists are available again to help manage depression, we have a plan to do math so the state of California isn't mad at me on top of everything else...Jesus.  Child one is doing phenomenally better since being pulled from school for sabbatical to learn to manage disabling ME/CFS and ADHD plus bonus global plague.  By the way, we did that.  I mean, we're a registered private school and we are continuing education but it's no longer the crippling additive it was.  One less crippling additive thanks.  There are kind of still too many tho. *breathing that shit out* Ok, singing only today.

Child Two has a trigger point injection in T minus five days and those five days are going to suck ass.  Then it's going to take a couple weeks at least for that injection to kick in.  Good god, I hate this song.  I think we're learned that for winter, we need to schedule injections back on our 6-8 week cycle, whereas we can stretch them back out to 10 in the summer when it's not storming because weather fucks up that head of hers.  *more deep breaths* I'm going to dive back into my new TikTok music crushes, because they are giving me life and sustaining me and motivating me right now.  Oh my god, Ben Mather you absolute beautiful freak.  He also has a YouTube channel that is worth it for the heartfelt kazoo solos alone. 💕 

https://www.tiktok.com/@bensrightbrain?lang=en 

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.