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.

Happy Canada Day from your grouchy neighbourhood cripple

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.

Wish me luck!

Loonily yours,
Katje

notes on gabapentin, day 6

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.

~katje

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.

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.

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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

body betrayal

living with chronic illness and disability is living with a body that is constantly betraying you.

i only speak from my own experience, which is that of someone who went from relatively healthy with a few weird but livable issues, to disabled, in constant pain, always fighting the truth of my own flesh.

because of it i’m stranded in between believing fully in the social model of disability and knowing that no matter how much we improve society, i’m still going to hate being this way. it will always suck for me.

there are people for whom the social model of disability fits completely, and that’s fine. but for those of us for whom it’s only a factor — well, it gets frustrating talking about it. because it seems like you’re saying nothing matters, we shouldn’t fix anything, things will always suck. or that you’re saying disability means being inherently broken or having something wrong with you.

when the reality is, you’re only speaking for yourself. and while no, being disabled doesn’t mean there’s anything morally wrong with me (something i still struggle to believe because of that great protestant work ethic hammering away at my psyche), the fact remains: i am broken.

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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.

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Can we talk a bit about chronic illness?

Specifically, acid reflux. I want to talk about my reflux.

I’ve been holding back so much from my public life. I’ve stopped blogging here almost completely because I always feel that any post here has to fit my “brand” — whatever my brand is. I think the problem became me trying to fit myself into some mold I’m not; trying to always be camera-ready, even in my writing.

When I first started blogging I talked about everything that was going on in my life. I didn’t hold back. Over time I decided there were some things I’d prefer to keep private, but generally I still blogged about my life. And then I became a writer, and suddenly I needed a writing blog.

I’m tired of this. I’m tired of feeling like every post here has to relate somehow to writing or reading or literature or just “My life as a writer” as if that is separate in any way from the rest of my life. I’m tired of feeling like there needs to be a theme for my blog. There is a theme: me. There is a brand: a genderqueer, disabled, chronically and mentally ill writer who tries to pen books when zie’s not feeling like absolute crap, and who has fucking had it with the stigma around talking about one’s illnesses.

So today I want to talk about reflux. Warning: this post will contain some graphic description of the effects of acid reflux. Not recommended for emetophobes.

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