Healing Hurts

Physio hurts.

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.

This is not for you: Productivity and Chronic Illness

This was originally posted on my Medium profile on February 7th, 2017.


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.

Continue reading This is not for you: Productivity and Chronic Illness

new meds

content warning: emetophobia

got my gabapentin today. trying it tonight.

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.

-katje

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

Finding Back the Glue

This post was originally posted on my Medium profile on January 13, 2016.


Sometimes I imagine myself as a table, holding a mug. The mug is my sanity, and the table is my life, it’s me, it’s the sum total of experiences and memories and everything that makes me, me.

The table has three uneven legs; they are wobbly and patched in places. One might actually be a real, human leg, but we’re not asking where it came from. Glued together, stapled, hinged, whatever’s available has been used. In the center of the table, between the legs, is a creature. It’s not human, not animal, not plant. We don’t know what it is. All we know is that it has many limbs, shakes constantly, and has a psychic link with my mug.

My mug is cracked in so many places it’s more glue than ceramic at this point. Every time it breaks, my perception of reality shifts a little bit. Every time it breaks, I lose a little bit of my mind. Every time it breaks, I’m left to glue it back together again, even if I’m not the person who broke it. My hands are cut and scored from broken pottery, flesh lined in tiny scars, fingers covered in that awful glue that turns your skin into a scaly nightmare as soon as it touches you.

I’ve glued my mug back together so many times I could do it in my sleep.

Continue reading Finding Back the Glue

Hope in the face of numbness

This post was originally published on my Medium profile on January 6, 2016.


My left pinky has become permanently numb.

I don’t know when this started. Every day I press it, hard, to the palm of my hand, in the hopes that that feeling, that pins and needles, that signal to my brain that something is wrong with the flesh — in the hopes that will disappear. It never does.

My pinky has become permanently numb.

Continue reading Hope in the face of numbness

My Dysfunctional Relationship with Library Books

I adore libraries. I love them so much. They are my happy place, and I have a not-so-secret but currently-impractical-as-fuck desire to be a librarian. (Impractical because, um, yeah, don’t have money to go back to school for a COMPLETELY NEW SET OF SKILLS.)

I love to go to the library and browse books. The shelves are full of possibility for me, even when the SFF section is severely lacking (as it often is, where I’ve lived — why would we have book ONE in a series anywhere in our system? MADNESS — here, have books #6-9, they’re much better. I jest, only partly). The library is about so much more than the tried and true SFF for me — it’s about exploration, finding something new.

Several somethings new.

Every time I go to the library for one book I invariably come home with a bag that is BULGING with them. My library book bag is a good size; it’s canvas, from the Questionable Content store on Topataco. It carries a good number of books — it carries the amount of books I will actually read in the time I have them out. Yet I always overfill it, sometimes carrying books in my arms, too.

At some point in my life, my reading skill went down. I used to be a fast reader with high comprehension. I am now a slow reader, with high comprehension only if I have enough energy — which is often not the case. I like to blame university for this change — you can often hear me lamenting that I used to be an avid reader before 10 years of academia broke me. That’s partially true; it took me a while to be emotionally ready to be a reader again.

I am emotionally ready now, and still my brain won’t cooperate.

Continue reading My Dysfunctional Relationship with Library Books

An Open Letter to the Man Who Called Me A “Retard” Today

Dear Sir, whomever you may be,

I hope you feel good. I hope that you are sitting in satisfaction at never having made a mistake in your entire human life. I hope that you know that you must be perfect, that the gods shine love down upon you and bless you in ways they do not bless other mortals.

This must be the case. I can’t fathom any other reason you would feel it necessary to scream “Nice fucking parking job, retard. Next time stay in your own fucking lane!” at me for a parking job that, yes, while not perfect, wasn’t as bad as you describe.

I’m tired, you see. It exhausts me to leave the house. But I did so with some excitement today, heading to the post office to pick up what I hoped was my wedding dress (it was). I parked in the only spot available — one between a tiny red sports car (yours) and an empty handicap spot.

The parking lot of this particular post office, located in a Pharmasave, is kind of shitty. It’s rather hard to do a good parking job there, and to be honest I’m still getting used to my minivan. It doesn’t handle the way my old car used to and it’s much bigger. So I parked, and got out, and saw that it wasn’t the best parking job. My rear right tire was on the line, yes. But there was still plenty of room between my car and the little red sports car — perhaps not enough room for someone sized like my fiance, Mr. Katje, but then he wouldn’t be able to fit in a car that size anyway. So I felt safe assuming that whoever was driving that car had enough room to get into it. And I was so tired. So, so tired I didn’t get back into my car and spend several minutes reparking, trying to get it perfect.

Besides, I figured, I’d only be a few minutes inside picking up my dress and then I’d be gone. Probably before you even came back to your car.

Obviously I was wrong on that count. Dress in hand, allowing myself to feel happy today despite the crushing weight of depression an anxiety on me, I headed back to my car and saw the space beside me empty once again. I hope they didn’t have any trouble getting back into their car, I thought, and yes, I felt a little guilty for not fixing the parking. It was a mistake on my part.

I make lots of mistakes, being human. I guess you don’t have that trouble. You must not.

It wasn’t until I got back into my car and, sitting still with the door open, arranged my things on the seat next to me that I realized you hadn’t left at all. I guess you had circled in your little red sports car, waiting for me to come back so you could shout obscenities at me.

Don’t mistake my slack-jawed face as I stared at you for a lack of thought (though I’m sure you did, considering the slur you flung at me). I was simply in shock.

I get road rage. I do. I understand feeling that people in other cars are idiots. I understand rage over shitty parking.

I do not understand what would drive someone to lie in wait, hidden, just so they could scream at another human being and call them a “retard”.

I guess I don’t understand because I’m human, with human empathy, and you’re obviously so much higher above me, on your cloud of never making mistakes, not fettered by annoying things like caring about other people.

So, Mr. Red Sports Car, I hope that you felt better after calling me a retard. I hope that, if you have kids, they never get put into Special Education for having learning disabilities and spend their school years being called a retard not only by their fellow classmates but by their teachers as well. Trust me, that sucks. I know from personal experience.

I hope you had a better day than I did, as I got to drive home holding back tears and thinking that I was so worthless I should just go kill myself. I hope you didn’t have to feel terror that an angry stranger might follow you home and attack you for one mistake that you made — as I did, because I honestly never know what angry men will do to me. I hope you find joy in berating a stranger for one mistake that they made. I hope that ruining my day made yours a little better.

I hope you’re still able to leave the house for reasons other than necessity, because after today I don’t think I can even make it to the library to pick up that book I wanted to read. After today, it will take all my strength to go to work, and come home. I don’t know how I’ll complete any wedding-related errands this week, seeing as the first one was such a fiasco. I can’t even open the package my dress is in to look at it. I feel too awful. I feel sick to my stomach.

Mostly, I hope that red sports car does its job of bolstering your self-confidence, so that maybe you don’t also feel the need to scream obscenities at strangers to prop up your manhood.

And I hope that this letter reaches you, so you know exactly what kind of impact you had on this stranger’s day. You’ll know it’s about you when you see it — after all, you saw my face, which is all over this blog.

Cordially,

-Katje

PS: Comments are disabled for this post because I don’t have the spoons necessary to moderate them.

Day 3

Content warning: emetophobia, depression, thoughts of self-harm/suicide

A week ago I had the flu. I call it the “Angry Badger Flu” because it felt like two angry badgers were fighting in my stomach and ripping up my insides and punching my gag reflex like it was a button that would give them kibble. Luckily, that portion only lasted one night, but the terrible nausea continued for a week.

Consequently I went without meds for a week. Taking pills of any sort often triggers my gag reflex and I always have to be super careful when swallowing pills to make sure they stay down. So when I’m suffering from things like the flu, I often have to stop taking any meds I’m on completely, at least for a few days. Otherwise it’s The Exorcist all over again.

Today is day 3 of being back on my anti-depressants. There’s kind of a night and day difference. It takes about 3 days for the anti-depressants to kick in, and today I am much different than I was this weekend.

This weekend I picked fights with Mr. Katje. I was surly and weepy and angry, so angry I wanted to hurt someone, preferably me. I thought a lot about killing myself, or just driving off a bridge. I had a lot of “What the fuck is the point of anything?” thoughts.

Today, I’m still stressed by the various stressors that didn’t help with my shitty mood last week, but I’m not thinking about suicide anymore. I’m not picking fights with Mr. Katje. I’m not surly, I’m not weepy. I’m even doing housework. (Is it possible to drown in laundry? I think it is. If you don’t hear from me for a few weeks, assume that’s what happened. Or that I forgot to update my blog in forever, as usual.)

I’m posting about this because I wanted to illustrate a very important fact: I am a better person when I’m on my meds. They are not a crutch, or a problem. I believe in better living through chemistry and that means finding the chemistry that works for me. My anti-depressants do a hell of a lot more for me than Vitamin D (seriously, shut up) or St. John’s Wort (though it does have a small effect, so I’ll give it two points for trying) or medical-or-otherwise marijuana (just makes me stupid and really hungry) or any of the amazing new miracle cures people are pushing these days.

Three days. That’s all it takes for me to go from “being suffocated by my own illness” to “functioning as normally as I possibly can.”

And yes, while I did survive years and years and years of having this illness without any sort of medication, so therefore it is possible for me to live without it…the key word there is survive. I did not thrive. I scratched my way through the dirt and broke a lot of nails to get here, to live enough days to get to this one.

I’m tired of breaking nails. I want a shovel. I want to see the light again in more than brief snatches. I want to thrive.

My meds are that shovel. Let me dig my way out.

Perfectly Broken

Lately I’ve been dealing with a lot of depression, anxiety, and self-loathing, and I figured I’d talk about it here, because chances are other folks go through this too and it’s always helpful to know one is not alone. General content warning for the post.

So, first: I want to say that objectively, my life is pretty great. And subjectively, too. I’m engaged to a really awesome person who respects me and my career. We live together in a nice place, in a nice neighborhood. I’ve started a new business and my career as an author is going pretty well. Overall our life is a nice thing.

But of course this does not preclude shitty things happening to us, and of course our lives are not 100% great. There are definitely areas that are causing some long-term stress and, for me at least, depression, anxiety, and all those other fun things I get to deal with already for no particular reason. Except now they’re being given a reason, and I’m finding my already fragile mental state being poked at constantly.

The main thing that’s poking the bear of mental illness for me right now is my physical state. Some of you know that almost 3 years ago I suffered a spinal injury. That’s actually not entirely accurate; the injury itself happened in 2009. It didn’t flare up like a fireworks show, however, until 2012, leaving me bedridden and unable to walk for weeks. After a lot of hard work in physiotherapy, I slowly was able to walk with a walker for short bursts, and then longer bursts, and then finally upgraded to a cane. I’ve been walking with a cane since 2012, though there have been times when I’ve been able to go without for a short period of time.

Likely, had I continued with the physio after getting to that state of wellness, I would eventually have gotten to a point where I could walk without a cane, and probably get somewhere near the state of health I was at before the injury knocked me down. Even in the years I had the injury but it hadn’t flared up I was doing pretty well, despite the new, sharp, knife-twisting pain in my lower spine that I had chalked up to “Another weird permutation of the chronic back pain I’ve had my entire life because genetics is a shitty lottery.”

But I didn’t continue with the physio. I quit in 2012. This wasn’t because I wanted to, or because I thought I was done: I wanted to continue and knew I needed more. But I could not find a new physiotherapist when I went back to Nanaimo after staying in Coquitlam for several weeks, and not only that — the price went up. You only get a few visits at the reduced rate with a doctor’s prescription, you see, and I would need to continue to go every week to see progress.

Fifty dollars a week is too steep for me. Then, and now.

So for 2 years I have lived no where near what “normal” is for me, just dealing with the pain, taking a strong painkiller on the days when I can’t move without it, and continuing to do things that are probably contraindicated for my spine’s condition but hey, what else am I going to do? My social life has dropped off considerably and my ability to do a lot of things in a short period of time has gone to zilch, approximately. I now need a few days to recover after an event that wouldn’t have left me winded 3 years ago.

It has been an adjustment, to say the least. I still overextend myself because I am used to a body that can handle more than it can. And though mentally I have gotten better since it first happened, I still have dark nights of the soul.

So when I broke my leg this summer — 3 months exactly as of this coming Saturday — I slipped into depression again.

Continue reading Perfectly Broken

Auditory Processing Deficit: It’s not a hearing problem, but…sorry, what did you say?

I have Auditory Processing Deficit. I’ve had it for most of my life — the test that shows the age level one’s auditory processing is at starts at age 5 and goes to age 18, but we are fairly certain my deficit started when I was 2 years old. Trauma can often be the cause of these sorts of deficits, and there was a doozy of one directly associated with hearing and listening when I was two. (I’m not getting into the story right now. I might at some point in the future.)

Before I took the test, mom thought I was just being a teenager with selective hearing. She’d have to repeat herself several times before I would remember what she said. I explained that I wasn’t forgetting or mishearing things on purpose; it was just that I literally had no memory of her saying certain things.

When I took the test she realized it was an actual problem, so we took steps to fix it. The test, called the Gibson Cognitive Test Battery, is part of a program called PACE — Processing And Cognitive Enhancement. It tests several areas of processing and function in the brain — the framework upon which you put content learning. Auditory processing, memory, visual processing, and other areas are tested. Often people who bottom out in one area will max out in another, because it’s their brain’s way of coping. I had maxed out on visual processor and a few other areas.

It’s a program my mom does, and she’s damn good at it. I did the program with her, though I didn’t get the full benefit. Ideally PACE is done quickly — the 36 hours within a few weeks — because this ensures the most advancement for the brain. Because mom had other students and I was in theatre we were both so busy we rarely had time for PACE sessions. We did the program over 2 years, often sitting for several hours in a session, determined to get as much done in one sitting as possible. For the longest time I held the record for levels passed in a session — not hard when your sessions are 7 hours long.

Still, even though it took us 2 years to do the program, I came up several ages in the areas I was lacking. When we were done I was age 16 in auditory processing — that was an advancement of 11 years (14 if we accept that the deficit was lower than 5 and likely at 2 years of age).

We tested me again recently and I have somehow made it up to age 18. However, I still struggle with remembering things that are said, and when I’m stressed or tired my processing goes down the tubes. (It also does not help that Mr. Katje is an avowed mumbler.)

It’s important to note that auditory processing is not a hearing problem. It is not a physical problem with the mechanisms for hearing things — my ears work fine (with the exception of the constant tinnitus). It is a problem with my brain — specifically the area used to process sounds.

However, so few people are even aware of auditory processing deficit as an actual thing that when explaining why I don’t listen to podcasts or why someone has to repeat something to me a few times to make sure I remember I often default to saying “I have a hearing problem,” even though I don’t. I can hear you just fine. Unfortunately, my ears don’t always give my brain the memo — especially when I’m stressed, or when the words are said in certain tones (because said tones stress me out). And these days I’m pretty much always stressed.

It’s honestly pretty shitty having this. School has been a struggle since high school, and last time I asked a teacher to slow down because he was speaking a mile a minute and I needed extra time to process, he said “Why don’t you try just listening?” (As if I wasn’t.) I explained the processing deficit and he and the entire class laughed in my face. That was in University, by the way, but this wasn’t the first time I was treated like that for having learning disabilities. (I was in Special Ed throughout high school and I swear, the fact that my mom kept fighting for me to get certain help in school was the only reason I graduated. If it weren’t for my mom I would have dropped out.)

Because the test that shows the deficit isn’t considered an official source by most schools I often can’t get any concessions for classes. This, combined with my other learning disabilities, depression, anxiety, and more recently physical disability, ensured that it took me 10 years to get my Bachelors instead of 4.

There are tons of podcasts I’d really like to listen to regularly, but I can’t because podcast listening for me entails sitting stock still and concentrating very hard on everything being said. It’s exhausting, and soon my mind starts to wander and then I need to rewind and find my place again.

Also it contributes to lack of communication with people I love, which creates fights. Just the other day I thought Mr. Katje said something that he didn’t, and we fought for over an hour over it. I misheard a sentence because I was really tired and my processing skills weren’t up to par, and he was mumbling more than usual that day. We made up, and talked it out, and all is forgiven — but I hate fighting with him and for that hour we were both miserable.

But, like with all things I have to live with, I learn to cope. I’ve done what I can to bring up my auditory processing to a manageable level, and I’m planning on doing PACE again with mom — maybe it’ll improve some more. In the meantime, I accept that I might always have problems processing what people say, and I work harder to keep it from adversely affecting my life too much.

In return, I only ask for a little patience from my loved ones.

So next time I need to ask you to repeat yourself, or I don’t remember what you say, please don’t take it personally. It’s just my super fucked up brain making my life a little more difficult. (So original, brain. I applaud your creativity. /sarcasm)

-Katje