Tag: chronic illness
load-bearing
Sometimes people hit a place in their life where things are going really well. They like their job and are able to be productive at it; they have energy after work to pursue the relationships and activities they enjoy; they’re taking good care of themselves and rarely get sick or have flareups of their chronic health problems; stuff is basically working out. Then a small thing about their routine changes and suddenly they’re barely keeping their head above water.
(This happens to me all the time; it’s approximately my dominant experience of working full-time.)
I think one thing that’s going on here is that there are a bunch of small parts of our daily routine which are doing really important work for our wellbeing. Our commute involves a ten-minute walk along the waterfront and the walking and fresh air are great for our wellbeing (or, alternately, our commute involves no walking and this makes it way more frictionless because walking sucks for us). Our water heater is really good and so we can take half-hour hot showers, which are a critical part of our decompression/recovery time. We sit with our back to the wall so we don’t have to worry about looking productive at work as long as the work all gets done. The store down the street is open really late so late runs for groceries are possible. Our roommate is a chef and so the kitchen is always clean and well-stocked.
It’s useful to think of these things as load-bearing. They’re not just nice – they’re part of your mental architecture, they’re part of what you’re using to thrive. And when they change, life can abruptly get much harder or sometimes just collapse on you entirely. And this is usually unexpected, because it’s hard to notice which parts of your environment and routine are load bearing. I often only notice in hindsight. “Oh,” I say to myself after months of fatigue, “having my own private space was load-bearing.” “Oh,” after a scary drop in weight, “being able to keep nutrition shakes next to my bed and drink them in bed was load-bearing.” “Oh,” after a sudden struggle to maintain my work productivity, “a quiet corner with my back to the wall was load-bearing.”
When you know what’s important to you, you can fight for it, or at least be equipped to notice right away if it goes and some of your ability to thrive goes with it. When you don’t, or when you’re thinking of all these things as ‘nice things about my life’ rather than ‘load-bearing bits of my flourishing as a person’, you’re not likely to notice the strain created when they vanish until you’re really, really hurting.
Almost two weeks after reading this, and I’m still kind of blown away at what a ridiculously fruitful definition this is. Like I had no idea that load bearing things were a thing that needed to have a word for them, but now I’m like holy shit I’m so glad that there’s now a word I can use to refer to this really important class of Thing.
This is astounding. Load-bearing. Forget spoons, this concept is wonderful. I’m going to update my Spear Theory with this.
To any and all disabled people, sick people, people with illnesses, spoonies, people who spend a lot of time in doctors and/or hospitals, or anyone else at all that can relate,
Your body is your own. It’s your body.
And I know that you feel like it’s not your body because you can’t control it sometimes and other people sometimes control it instead and sometimes people think they know better than you about your body and you can’t choose how much you show people sometimes and you can’t choose what people know and don’t know sometimes… and everything… but it’s your body.
It sucks I know and I can’t promise it will get better but it is your body. You’re in charge of your body, when you can be at least. I know you wish things were different sometimes and that you wish you had more control over your body.
But as long as your disability or health does not prohibit you from doing so, because it’s your body, you can
Get piercings
Get tattoos
Dye your hair
Wear different clothes
Have your hair cut or styled
Draw on yourself
Paint your nails
(Similarly, feel free to style up those mobility aids. These are also, in a way, part of you, if you want to think of them as such.)
Because it’s your body. It really is, even when it doesn’t feel like it.
Also, if someone outside of a medical environment wants to know “WHAT’S WRONG WITH YOU?” You do not have to answer. You are in no obligation to tell them. You don’t have to educate people’s children if you don’t want to. You don’t have to inform anyone at all if you don’t want to. You don’t owe them anything, and it’s none of their business, because it is your body.
I didnt kno they had these
brow extensions
Okay but do you realize how good this is for cancer patients?? People with scars who can’t grow brows??? People with alopecia??? (Sp? ) like… pls stop hating the beauty industry.
people with trichotillomania
Yes to people with trich. One of my roommates reblogged this saying they didn’t even know they made these until they met me. And the sad thing is, I didn’t even know they made these until I did a Google search one night in a fit of desperation. I’ve gone to so many therapists for trich, and instead of providing me resources like this, they would often leverage the fear of looking ugly as motivation to stop. If anything, it only ever made the problem worse.
These save me so much time in the morning. Before I discovered them, I would have to meticulously pencil my brows on every day just to feel normal enough to leave the house. By contrast, I can keep the fake ones on for about three days at a time, and gluing them in place takes only a few minutes with a bit of practice.
I’ve been getting mine from headcovers.com for over three years now. They’re a bit pricier than the ones offered on other sites, but they last 3-4 months if taken care of properly (meaning to buy the site’s adhesive remover as well and clean them after each use). They also look very natural. Everyone who’s talked to me about them told me they didn’t even know my eyebrows were fake until I alluded to such or took them off in their presence.
This sounds like it could be quite useful for some of my readers!!
of course something ignorant was said about this product by the original tweet poster, but
reblogging for the false eyebrow site^^
really thinking about purchasing some.Going bald during chemo didn’t bother me nearly as much as losing my brows. I’m not sure if it was because I had adorable wigs or just because I was prepared for that part, but nobody tells you how much the color, thickness, and shape of your brows affects your face.
I didn’t even know eyebrow extensions were a thing. Reblogging for my followers with trich and alopecia
Your comfort is a part of your recovery.
It’s become sort of a running gag at the physio place with the rest of the staff that Magic Physio Man and myself are in a platonic S&M relationship. My pain tolerance is renowned with everybody in there, as is his ability to reduce full grown men about three times my size to a sobbing heap at his feet with a few well aimed pressure point taps. He’s got a well earned reputation for being a hard task master, and the staff and even the owner are endlessly entertained by the fact that when I get up off the table, he’s the one that has to go put ice on his hands.
This comparison is absolutely helped along by the fact that he is very good about using consent language when he is dealing with me. He knows my history of medical trauma, he knows people have hurt me by putting their hands on me before, therefore everything is narrated to me so I know what to expect, and feel comfortable and safe with tapping out at any time. Which in all honesty, I’ve rarely had to do with him. There’s been a few moments when I’ve very calmly had to tell him “that is approaching a Red Feeling for me” and he’ll ease up or switch up what he’s doing to alleviate the pain/switch to something else. But it’s always been like, a good pain. Never something that would do me injury or would register above the overall background chronic pain tolerance.
The only other time I’ve really tapped out was when he was working on removing muscle adhesions from my throat and the pressure so close to my windpipe was making me antsy and I needed to take a break. But I’ve never had to straight up safeword because something was too painful.
Until today when he tried to do a hip evaluation and I startled the fuck out of everyone by screaming “STOP RED HARD STOP HARD STOP!”
My right hip hurt (both are inverted and rotated) but it was more of a “tight muscle” feeling, and after a few minutes of doing the stretches and him applying some pressure to some tender spots, it eased up enough that he was nearly able to hike my knee up over my shoulder to sit flat on the table, something I haven’t been able to do since my teens/very early 20s when I still worked the holistic circuit and did yoga training multiple times a week. My left side? We didn’t even get through the basic resistance stretches before I was having a meltdown and begging him to stop because I was in so much pain I couldn’t stand it.
It was like no other pain I’ve experienced before, and y’all know my history with painful experiences. I honestly never thought something would ever top having two root canals done without anesthesia but this was something else entirely. This was “the sun is going nova in my hip joint and there will be no survivors” levels of white hot agony just flaring out from my pelvis to consume the world.
Basically he thinks the hip is out and grinding itself to pieces against the socket. I need an x-ray fairly quickish, which we’re working on, along with hopefully being able to fix it. Cause that was… yeah. Yeah. I am not about that. And neither is he.
Like his alarm was evident, and I’m so thankful he’s a calm and consummate professional because I could have seen someone else dropping my leg in a panic in that situation. Instead he talked me through it, letting me know it was okay and the pain would stop in a second, he just needed me to stay calm and let him move slowly because he didn’t want to jar the joint any further. As soon as my leg was flat on the table he was lighting quick down at my eye level going “what do you need, how do I help?” and doing everything he could to make sure I was okay. At which point he called a halt to all physio moves and went with pure pain relief massage for the rest of the session.
I felt like a tit afterwards with my head in the little hole thingy just staring at the floor, and apologized for being a big baby and not being able to finish the exercise, and he straight up stopped what he was doing, knelt down beside me again, tapped me on the back of the head so I’d look up and then very seriously with a lot of gentle concern said, “never apologize for being in pain and protecting yourself. Your comfort is a part of your recovery.” and honestly it’s been six hours and I’m still thinking about that.
“Things my physio has said to me”:
[part 6ish] [part 6.5]
When I was training to be a battered women’s advocate, my supervisor said something that really blew my mind:
“You can always assume one thing about your clients; and that is that they are doing their best. Always assume everyone is doing their best. And if they’re having a day where their best just isn’t that great, or their best doesn’t look like your best, you have to be okay with that.”
Any now whenever anyone in my life, either a friend or a client, frustrates me, disappoints me, or pisses me off, I just tell myself They are doing their best. Their best isn’t that great today, but I have days where my best isn’t that great either.
Op I’d like to thank you for sharing this. Ever since the first time I’ve read it I’ve held it in my mind and it really has helped me to be kinder to others and to myself.
When we talk about being fat-positive and we say, “weight is not an indication of health,” I will reblog it. But I want us to also say, “health is not an indication of value.”
I could be at any weight and I will never be healthy, because I am chronically ill. Someone might be chronically ill and fat, or they might be chronically ill and not fat, and it really doesn’t matter.
When you make it about health, you’re saying health is the pinnacle of human achievement, and you’re shitting on those of us for whom health will always be a pipe dream.
Oh
Oh
gentle reminder: there isn’t anything embarrassing about needing to take medication in order to cope.
Things my physio has said to me, part 4
“So, how was your weekend?”
*
“What do you mean you went on a roller coaster?”
*
“Okay. We can work with this. Does anyone have a crowbar?”
*
“That was a rather worryingly loud crack. Fortunately it came from me and not you. Gimme a sec.”
*
“Okay that one was you. Are you alive?”
*
“You are still worryingly dehydrated. Have you tried using a straw yet? No. I really think you should. But what do I know, I’m just the trained professional.”
*
“Well the good news is, your hips are starting to flex more, so good job on those exercises! The bad news? This is still really going to hurt.”
*
“I’d really like to not have to work on your styloid process if I can help it. I’d also like a million dollars, just in case you’re up there god… ”
*
“Thank you for tapping out. Despite all evidence to the contrary, I don’t enjoy hurting you.”
*
“I dunno how you feel about essential oils but–that badly huh. Okay nevermind. Untense, untense.”
*
“Yes I am humming the tune to “Dem Bones”. Don’t worry about it.”
*
“And now, let’s sit you up and make sure nothing falls off. Excellent. Still got it.”
*
Queer Fiction Writer 