All the trials and travails of being a corporeal being. Chronic pain, chronic illness, acute illness and pain, mental health and illness…and all the joys too. If it’s about being corporeal and mortal, it’s here.
I did say I’d get that Gwyn ap Nudd piece up this week, didn’t I?
Well, I wasn’t lying, but apparently my brain has had other ideas. I’ve completely lacked in executive function this week. Or more accurately, I have been plagued by executive dysfunction.
What does that mean?
Executive dysfunction is often dubbed “laziness” by people who don’t understand it, but it’s not laziness at all. I have executive dysfunction *and* I can be a very lazy person, so I know how to tell the difference. (Though often my brain likes to berate me for my laziness even when I know full well it’s executive dysfunction — because ill brains like to attack themselves. It is known.)
Laziness is “I should get up and clean the living room, but I don’t want to, so I’m going to watch Doctor Who instead and enjoy it.”
Executive dysfunction is “I really want to get the living room clean, and finish that blog post, and work on my novel, and do some publishing work, and do a load of laundry so I can have clean clothing, but I can’t. I’m sitting here unable to even get up to think about those things. I’m telling myself to get up, but I can’t. So I’ve put on Doctor Who but I’m not even really watching it; I’m staring at the TV screen and wondering why I’m so fucking broken.”
I have been in both these places. The second one is what I’m stuck in right now. I have been *trying* to force myself to get things done, to work past the executive dysfunction, and mostly I have been failing. I’ve also been trying to not be hard on myself, but the truth is that a lot of my responsibilities don’t really give a shit if my broken brain is acting up and making it near-impossible to get done the things I need to get done — they still need to get done and I’m the one who has to do them. So not beating myself up over it is easier said than done.
Even on good days I struggle with executive dysfunction. The stuff you see from me in public? The posts of chapters to Wattpad, updates on my Patreon, my weekly newsletters? Those things take inordinate amounts of energy even during good phases. (Not even getting into the stuff you *don’t* see from me in public. So much background work goes into indie author life.) This is not a good phase.
Honestly I don’t know how I’m writing this post right now. I managed to make myself sit down and start it, and I’m not going to get up until it’s done, because otherwise? It will languish on my hard drive for the rest of time. And I should post it, so you know what’s happened to Mythology Mondays.
They’re not on hiatus. I’m working on Gwyn’s post. It just might be…a week later than its first postponement. Gods, I hope. I hope I can get it up by Monday.
So, let’s say Monday the 23rd, Gwyn ap Nudd, then back to the every other Monday schedule, which puts Borvo on August 6th. Let’s say it, and then maybe it’ll make itself true!
It’s 5 am, so I’m going to go to sleep now, and hopefully tomorrow I will get more than a grand total of 2 things done.
Drove out to Coquitlam tonight for my physio appointment. Driving there was difficult; I was having high anxiety, as I have since last Sunday when I learned of the deaths of two people I cared about. Late last week I had to force myself to leave the house so I could get over that huge hump of anxiety; it’s lower than it was, but still difficult to deal with.
Physio itself hurts like hell. I have to do exercises to build up certain muscles that have sat dormant in my crippledness for years. The muscles scream in anger and rebellion at me. And the physiotherapist — who is awesome! — has to push and prod at me to get my spinal muscles to ease up, and to ease my spine back towards normalcy.
And it hurts like hell.
Don’t even get me started on the squats I need to do and what they do to my knees.
At the end, all that back and neck work triggers a small migraine, so I drive home drinking a coffee from McDonalds after taking an extra-strength Tylenol to banish the migraine to the depths of hell from whence it came.
Home, I still hurt all over, and I have more to do before I can go to bed tonight.
This healing thing isn’t for cowards. I am one, but I’m trying really hard not to be.
Yesterday I ran a lot into something that’s physically painful for me to see: clappy hand emojis between words. It’s an internet trend to make what are considered important points this way, instead of the old-fashioned placing of a period between each word. (What. was. wrong. with. that?)
You’re probably wondering why/how it makes me sick. The best explanation I can come up with is that my visual processor is over-developed and hyper-competent after a lifetime of having to make up for my auditory disabilities — my hearing is fine, my brain has problems processing and parsing sounds — and so when I read things, I experience them more vividly than people without that disability do.
My lack of ability to properly parse things I hear means my visual processor makes up for it by making me hear things mentally really well when I read them. This is why shitty punctuation in a book drives me insane. I can’t just skim over it when reading; it’s integrally a part of what I’m experiencing. It tells me how to “hear” things in my mind, and if it’s wrong, it will fuck up my entire experience.
(This is also why I loathe the practice of 2 spaces after a period. It makes my brain grind to a halt when I’m reading something, because one space is a normal pause between sentences for me. Two spaces is the emergency brake.)
My experience seeing the clappy hand emojis between words is to feel as if I’m being slapped or punched in the face after every word. Reading a sentence written that way gives me a headache and makes me nauseated.
And to be honest, even if it didn’t cause me physical pain, I would find it the most annoying fucking thing on the planet. So either way, I’d be stoked if people could fucking stop doing it.
Anyway. Yesterday I saw like, 3 or 4 tweets using this method so I spent most of the day feeling headachey and sick to my stomach. One of them, however, is what inspired this post.
This was from an account I used to enjoy following, and from someone I thought was pretty cool. Not only did they use the clappy hands emoji thing that makes me sick, but they used it to repeat a really damaging belief: “you can’t love somebody until you love yourself.” (I’m pretty sure that’s what the tweet said exactly; I just went and double-checked as fast as I could before getting too sick. Am super nauseated right now anyway.)
This is a bullshit idea and I am so sick of hearing it repeated.
Working on self-love is, of course, important, and something I encourage EVERYONE to do. But the phrasing of this idea, the way it’s always put forth, makes it a zero-sum game: you cannot love someone until you love yourself. Unsaid in that sentence: your whole self. You cannot love someone until you love yourself 100%.
This idea leads to a horrible self-repeating spiral of self-hate. That sentence also says that if you DO love someone when you don’t love yourself, it’s not enough. It’s not GOOD enough. Your love for your spouse or sister or daughter or son or best friend — it’s not enough, because you don’t love yourself first.
And because your love isn’t enough — because you don’t love yourself — you are obviously not worthy of that person. And if you’re not worthy of that person, then you are, of course, not worthy of THEIR love and thus unlovable.
How the fuck are you supposed to work on self-love if you keep getting told that the love you give isn’t good enough?
I’m a broken person. I’m damaged goods. I always will be; doesn’t mean I want to be treated like I am. You can glue something back together, but those cracks will always be visible.
Most days I absolutely hate myself. But you know who I love? Mr. Katje, my husband. I love him so much I can sometimes forget what an awful person I am. I love him so much I can forget that I hate myself.
And Mr. Katje loves me, and because he loves me, he helps me work on these things. He reminds me to eat, because I can’t love myself enough to do that. He reminds me to take my pills, because sometimes I cannot take that care of myself. His reminders build up, and become my reminders: I eat because Mr. Katje loves me, so I am worth loving, so I need to love myself. I take my pills because Mr. Katje loves me, so I am not an unlovable monster, so I need to take care of myself.
Through his love of me, I am slowly, very slowly discovering self-love. It is self-love based in the love of another person.
I suppose people who believe that self-love must be entirely self-generated, a virgin birth in your heart, would see that as unhealthy.
I believe humans are pack animals and we cannot exist alone. I believe relying on oneself to the exclusion of all else is unhealthy. I believe we need each other in the same way we need food, water, shelter.
So I do not see my building up my self-love based on the love others give me as unhealthy. I see it as human.
I know Mr. Katje struggles with self-love, too. I know he has doubts; I know he has that voice inside that tells him he’s not good enough, not smart enough, not strong enough for me. I know he feels he’s not a good enough husband for me, because he can’t support me like he wants to, because he’s been damaged by a lifetime of society shoving it down his throat that if he’s not earning big bucks, he’s not good enough.
(Kyriarchy damages men too.)
He is enough. He will always be enough, regardless our money situation, regardless what lies society screams at him. And if the love he gives is enough for me, then the love I give has to be enough for him.
It’s not fair to ask damaged people to put everything on hold while they try to figure out how to love themselves, and then to tell them that if they can’t figure that out, they don’t deserve to love anyone else.
It’s not fair to ask that of anyone.
Spend time cultivating self-love, as much as you can. But if you cannot get that to 100% — that’s okay. If all you can manage is 5% on a good day — that’s okay. The love you give is still worthy. The love you give is enough. The love you give is not subtracted from by the hate you feel for yourself. This is not algebra.
We may be brokenhearted, but we are enough, and whatever love we can pump out of those damaged organs is enough. It has to be, or humanity doesn’t stand a chance.
I just got off the phone with both my doctor’s office and my insurance company (this is after searching the car and concluding the fault MUST lie with the pharmacy, but I need to be absolutely sure of that before going to war).
The fault absolutely lies with the pharmacy. I was given NO scrips for my stomach and crazy pills in June by my doctor, I was given them in April (which is the date I knew). My insurance was not charged in April at all, but was charged on June 27 for those pills.
Both offices said that if the pharmacy tries to dispute it with me, I can tell them to call doctor or insurance and they would confirm that I am not, in fact, fucking crazy (on this count, anyway).
Tonight, after it cools down a bit as the wildfires have blanketed the city in smoke and it’s a smokey sauna out there, I will be going to the pharmacy to rain down fire and brimstone upon them.
Normally I don’t like confrontation, but their fuck up could cost me 90 dollars I don’t have, or make me go a month without my *life-saving meds*.
Normally I am more understanding about humans making mistakes, but this is exactly the sort of mistake I am not okay with. I didn’t fuck up — they did — and yet I’ve had to spend several days RUNNING AROUND LIKE A HEADLESS CHICKEN trying to rectify it, all while convinced that I’ve completely lost touch with reality because I don’t remember doing what they said I did.
And godsdammit, I will be damned if I let their fuck up break my streak of taking my pills EVERY DAY for the past 2.5 months. EVERY. DAY. Do you know how AMAZING that is for me? Every day when I take my pills I immediately tell my husband that I did, so that 15 minutes later when I forget I’ve taken them I can ask him if I did and he’ll know.
But that’s not the only part of the system I have to keep me taking my pills every day. I also have a weekly pill container (not refilled for this week BECAUSE OF MY LACK OF NEW PILLS) and I keep track in my habit tracker in my planner. This combination has lead to me having a near perfect pill-taking streak for 2.5 months.
Before this system, I was lucky if I remembered to take my pills every other day. I was a wreck.
Now I’m marginally functional. And no pharmacy fuckup is going to take that from me.
So I am vindicated today, and preparing for battle. I almost feel sorry for whoever is working at the pharmacy tonight.
Serious content warning for this post. I talk about childhood abuse, trauma, suicide, and sexual assault.
There’s a video making the rounds on social media. I haven’t watched it. I don’t want to watch it. But I’ve seen the comments and I know, basically, what it’s about: a child having a tantrum on a train.
Comments have ranged from “this kid is probably autistic” to “this kid needs to be disciplined” and it strikes me this is just yet another way for people without kids to judge parents for not doing a good enough job; or people with kids to feel superior because THEIR child never had a meltdown on the subway.
It also strikes me how very lucky I am to have been born in 1986 and become a teenager in the 90s. Because I grew up without ubiquitous cellphone video cameras and the ability to post video of strangers online. I grew up without the danger that my one bad day would have meant worldwide shaming of my mother, and custody being ripped away from her.
Before we moved to Hawai’i my summers were split between my parents. (After moving there, I spent them with my bio-sire, for what was called “access” because he required access to his child and I was supposed to have access to my tormentors.)
After the first half of the summer being spent with my bio-sire and his new girlfriend, a woman we dubbed Wife #5 (he’s on #7 now), and her band of ill-mannered, horrific monsters of children, I got to spend time with my mom. This particular summer we went to Hawai’i to visit with people, including my new friend who became my best friend and still is (she was my maid of honor at my wedding).
I’m not really sure why she stuck with me for so many years, because that was the second year we knew each other and it was the summer I went insane.
I was a monster. I screamed and cried and kicked. I lashed out at everyone, including my best friend. I threw tantrums on a regular basis. I said cruel, hurtful things. I tried to kill myself. I wielded sharp weapons and was a danger to myself and others.
No one knew what was going on. My mother was at a complete loss, trying to manage a child who had never acted out on this scale before. She was inches from putting me into an institution, and had the threat of my bio-sire taking custody not loomed, she may have done so.
And I couldn’t tell her. I couldn’t tell anyone, because I didn’t have words for it and I blamed myself.
I really do hope you’re having an excellent day, regardless if you celebrate Canada Day or not. It’s Saturday and that’s a nice day so have a wonderful one if you can.
As for myself, I’m grouchy and grumpy, because I’m broken. Again.
I’m up visiting my mom in Powell River and I was really hoping we could go to the special Canada Day farmers’ market today (an hour longer than usual!) and maybe hit up some celebrations elsewhere. Just, you know — go out, have fun, see people, enjoy the summer weather.
INSTEAD, I am basically kind of stuck at home. I could conceivably go out but it’d be a bad idea I think. I threw out my back this week, which when you have a spinal injury is a lot worse than just mechanical back problems. How did I throw it out? FUCK IF I KNOW.
Honestly, no idea, and it was probably nothing. I think I just moved wrong.
So now I’m in agony, though the number has gone down from a 10 on the first day to hovering at about a 5/6. (That is, according to my own scale of pain measuring, which…well, I have chronic pain, which means I basically live life at a 3 or 4 for other people. So when I say I’m at a 5/6 for me, that means an 8/9 for people who don’t have chronic pain. It’s really amazing what you can get used to when there’s no help for it.)
I have been grouchy and depressed since this happened and there has been much crying. There’s no really safe bed for me up here (mom’s mattresses are too soft, which didn’t used to bother me but now it does) so I slept in a chair last night. Sitting is painful, standing is painful, walking is painful, and I absolutely cannot lie down or I am fucked completely.
It sucks. Spinal injuries suck. There’s no two ways about it. And I’ll continue to have this life where I’m okay until suddenly, I’m not. FOR NO FUCKING REASON. Because there’s no logic to it. Backs just stop working, and especially when your discs are trying to flee the vertebrae.
We’ve been discussing options. I have somewhat of a plan; a lot of it is just nagging doctors until I get some help. First I really want to see if I can get a referral to a spinal decompression place so MSP will pay for it. They’ll be reluctant I’m sure but here’s the thing: the ~3500 for the non-invasive 8-week program of decompressing my spine that *might* give me back a good chunk of my function will actually cost them less than my other option, which is surgery.
I really don’t want surgery unless it’s absolutely necessary, but we are getting to the point of “I need to fix this or I’m looking at a short, agony-filled life”. So if that means going under and getting my fucking discs taken out and my vertebra fused together, well, that’s what that means.
But yeah, I’d like to do decompression first.
So right now it’s Canada Day and instead of going out and doing something fun I am sitting at my mom’s place and praying that I’m well enough to go home by the time I was planning on it so I can go see my doctor in Vancouver and ask about getting a referral to the spinal decomp place so MSP will cover it.
And if I can’t get that….I don’t know. I have this vague thought of trying to raise the money for it somehow, but I don’t know how to do that, to be honest.
Anyway. I’m going to try to write today, because it’s Camp Nanowrimo this month, and I’d really like to make my goals even if my back is being a complete jackass about it. At least I’m better than I was two days ago; that’s something.
Last month my friend from high school died, and we don’t know why, he just did, he was in his late 20s and he died of natural causes, which is just fucking me up because what the fuck does that even mean?
Like my brain kind of thinks that if you make it through infancy then random natural causes should be off your list of possible deaths until you are in your late 80s. Unless you’re sick or you get hit by a car or whatever, you should be safe.
But his body just quit. It just quit and there’s no reason to it. He was healthy and in his 20s and it just quit. Natural causes means we don’t know what the fuck happened, he just died.
And I’m not healthy and I’m 30 and I don’t want to die. I say I do all the time and I’m suicidal but I don’t actually want to die, I just want the pain to end and so far the most efficient way for that to happen seems to be death. I learned the lesson of my desire to live when I accidentally poisoned myself with belladonna. (Yes, accidentally.) I don’t want to stop living. I’m terrified of dying too early.
And I’m terrified of my husband dying too early. He’s 35 and since Jesse died my anxiety about my husband randomly dying in his sleep has skyrocketed. (It was already there, because I’m an anxious, fucked-up mess of a human being.) He was sleeping in for a long time the other day and I suddenly had a panic attack over it, I had to rush in the bedroom and make sure he was still breathing.
ok, so 6 days of taking my new meds. here are some notes on it.
it works. i mean, it definitely stops my twitching when i’m awake. however i’ve noticed, now my twitching has stopped, that i also have nerve pain in my extremities. i just never noticed it before because i was always either jiggling my limbs or twitching.
i’m not worried about the nerve pain, as it can take 2 weeks for gabapentin to get rid of it. so if i still have it after 3 weeks, i’ll worry.
i sleep really well on it. first 2 nights i used it were on the recliner, because my neck was so stiff and sore. i never sleep well on the recliner, but those 2 nights were the best recliner sleeps i have ever had. and the third night, in bed, it put me into a mini-coma.
i’m still tired during the day, but i also haven’t been taking my iron daily and i have a massive sleep debt of like, 20 years. so i’m expecting to still be tired throughout the day for a while.
even though i’m still tired throughout the day i’m way more awake than usual.
side effects i’m experiencing: drowsiness (useful), slight dizziness and nausea, when i wake up in the morning it takes me longer to shake the sleep fog, and longer for my vision to come back to normal, and some extra bleeding and bruising (which i’m not actually 100% sure is from the gabapentin, as it could have other causes right now). all in all, nothing too severe and nothing i’m not willing to deal with in order to get a better night’s sleep. (regardless i’ll bring up the side effects with the doc when i see him next, which should be a week tomorrow.)
conclusion: it’s working, and so far i’m happy with it. will continue to monitor it for any severe or scary side effects, and am waiting to see how close to “normal” i’ll get with regards to feeling awake in the day, but for right now allowing myself to feel cautiously hopeful that this might be the answer to my sleep woes.
and now, i am a sleepykat so i am off to bed. yes, at 6am. don’t judge me.
ps: i think it also made my breasts bigger, which i consider a win. at least i do today; on a day when i don’t id as femme as i do today, it’ll probably cause some severe dysphoria. c’est la vie du genderqueer.
I read a lot of articles on productivity and improving one’s creativity and making life better. How to do better, be better, accomplish more, feel satisfied with my life, not feel like such a fucking failure all the time. I read these articles because productivity and discipline are things I struggle with and I want to see if there’s anything out there that can give me a leg up in reaching my goals.
About 90% of them are explicitly not for me.
I struggle with discipline, but I’m also chronically ill. I have trouble being productive because I’m a procrastinator, but I’m also disabled. I struggle with gratitude because I haven’t developed a habit of it, but I also suffer from severe mental illness.
There are very few articles out there about productivity that write with any of these things in mind. Almost all of them talk about “willpower” and “making time” and “a morning routine is essential” and “you need to practice gratefulness” and “breakfast WILL give you energy!”
Willpower? Willpower means nothing when I sleep through the 10 alarms I set; it’s not about using my strength of will to not hit the snooze button, it’s about salvaging my wreckage of a day because my body refused to wake up, refused to even hear the alarms until it got 12 hours. Articles that write about “having the willpower to get up earlier” are telling me nothing new; they’re just telling me something useless, something I’ve heard time and time again that does nothing to help me with my issues.
also sleeping on the recliner tonight, because my neck won’t stop hurting. i don’t know what’s up with it. it hasn’t hurt this much since the last time i got whiplash. which was…on a bumper car i think. (yeah, bumper cars give whiplash. just in case you were out of things to worry about your kids doing.)
we had to go out when i was just waking up and before i had a chance to let my muscles adjust to actually being upright. that was less than fun. i’m doing better now, though, and we did pick up the package from the post office and our scrips — can i just publicly thank Asclepius for insurance? i don’t even know what it would have been without, but with our extended insurance from mr. katje’s workplace it was 17 bucks for three scrips. gone are the days of me taking my anti-depressant every other day to make it last! Io Asclepius! — and also got a little grocery shopping done as we were out of milk.
we’ve recently switched to 3.25% milk from 2% and i’m drinking a lot more of it. IT’S SO GOOD. however, we kind of regret going to IGA instead of Save-On today. milk was over 6 dollars for a 4L; at Save-On it’s around 4.5 bucks. that was a huge ouch. but i was too unwell to handle too grocery trips, so we just got it and sighed heavily.
i also asked at the pharmacy about switching from zoloft capsules to tabs because the capsules are incredibly hard for me to swallow and can cause me to throw up if i don’t do it exactly right. apparently the tabs are not available in Canada. because Canada has super draconian laws about medicine and food. (if you think the FDA is tough, haha have i got news for you.)
sometimes, i appreciate those laws. not today.
so continuing to use zoloft in capsule form until i can figure out a new med. maybe one that doesn’t make me sick and actually works better for my mental illnesses. hoping i get that appointment with a psychiatrist soon because i am running low on my meds.
but i’m excited about the gabapentin! i had a feeling i have Willis Ekbom Disease (aka ‘restless legs syndrome’ but the restless legs are a reaction to the uncontrollable spasms it causes) which i brought up with my doctor (short aside: i love my current doctor. he actually practices medicine instead of just telling me to lose weight. sent from the heavens. Io Asclepius again!) because i’m worried that it’s causing me to have a bad sleep. even after using the cpap for 6 months i am still exhausted all the time. much better with the cpap than without, but still. i shouldn’t be this tired.
so i asked if there was a test for willis ekbom and he said no, it’s one of those things where we give you treatment and see if it works and then that’s the test, basically. so i’m only supposed to take it before bed to see if it helps interrupt the processes that are causing me to spasm so i can actually get a full night’s rest instead of my body shaking itself ever so slightly awake all the time.
(i still spasm during the day and it’s uncomfortable, but if i can just get it to stop at night i can handle the daytime spasms. i’ve been dealing with them for a long time, after all.)
i’m really crossing my fingers the gabapentin works for me, because if i can fix my sleep i have a feeling i will feel 100x better, even with continued disability and chronic pain.
edited to add: between finishing writing this post but before publishing it i actually took a look at my pills. they’re capsules, because of course they are. i now have three prescription pills that are capsules. huzzah me. XD