Lol people are the same everywhere you go.
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Are you referring to me or those other losers?
The signage people, although maybe you too but it hadn’t occurred to me until you said it.
Not too many lava cybertrucks around here though so you may still have the upper hand.
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I deal with a lot of chronic pain (rheumatoid arthritis for nearly 20 years).
Every day of my life is pretty much constant physical pain, but I’m also a big strong morherfucker, so even though everyone in my life knows I’m in constant physical pain (not that I go on about it, it’s just really obvious every time I have to move or do anything), they still expect me to go do all the big strong man shit, which I do without really complaining because I’m fucking British.
I had some Naproxen for a while, but my wife used it all up when she fell over in a shop and broke her arse bone and the doctor won’t give me any more until I agree to mainline fucking repurposed chemotherapy drugs that remove my immune system, which makes life pretty difficult with two little kids poking their fingers in everything. But there’s definitely a sense of freedom in not asking for or recieving help. I find the thought of being at the mercy of treatment more terrifying than just shutting up and getting on with it, stiff upper lip style, and have to remain grateful that I’m still lucky enough that I can make that choice.
I’ve no comprehension of how shitty a day that was for you, but I can totally identify with those feelings. The worst part of being a patient is the loss of agency, the transfer of power over your body to others is a really hard thing to have to accept and finding it difficult is a completely natural response.
Hope you feel better.
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I had to watch my partner go through chemo for 16weeks over winter - she had same issues. This for her was always the worst part (above surgery, side effects, tiredness etc), she had to get a pic line eventually but even that has its issues. Fucking awful for a person to deal with - all I can say is what I told her, your proving to yourself just how strong you can be, that fact you go through that, deal with it (even how hard) means you demonstrate to yourself how capable you are to deal with anything else in your life and all the other issues in your life suddenly become much easier. All the best.
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7 days w/o a new post.
Turrible.
Also, ladies, Mothers Day is not a week long event. OK??
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This is something I’ve been thinking about a lot over the last few years. Years of chronic pain, significant modifications to and reduction of things I enjoy doing over the last few years, lower job performance, a half dozen different doctors, multiple failed treatments. And finally a surgery which will hopefully fix the issue. I guess I’ll know in a few months if it worked. Timelines, treatment methods, my ability to do certain activities on a day-to-day basis, my fucking job security. All of it has been outside of my control.
The lack of agency over my own body compounds with the knowledge that the pain has the potential to take away so many aspects of my life. It has been harrowing. I live with a disability unrelated to the chronic pain, something I was born with. I actually forget that I have it much of the time, and I forget that most people have two fully functioning hands. I’ve managed with only one fully functioning hand for the last 30 something years, I can keep going. That’s not a big deal.
Or at least, I could until my one good arm was in a fucking sling after getting sliced open. It’s so hard to express how unnerving being dependent on another human for basic shit was - I couldn’t cook, couldn’t bathe myself and I could barely wipe my own ass. Opening doors? Putting on my own shoes? Literally couldn’t do it. I don’t know what I’ll do if anything ever happens to my right hand. It would almost completely remove all of my agency, and take away almost everything I enjoy about life.
That got dark, but I guess that’s the nature of things sometimes. I’ve been processing this shit a lot for the last few weeks as I recover, and this seems like a good platform to get it out to someone other than my incredible wife who has been an absolute saint through all of this.
Also thank the deity of your choice for voice control options and dictations software.
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I can understand this fear. I think it’s impossible to let go of control without a serious struggle. If it’s possible to go through it with nothing but positivity and grace, I’ve never personally seen that.
For the last two years, my dad has been losing nerve function in his legs and hands due to neuropathy (not diabetic/“unknown cause”/complicated). It got to a point where he couldn’t walk, and before some surgery and other aggressive treatments, he was getting to a point where he couldnt hold anything with his hands either. This wasn’t a lifelong progression, but something that came on quickly. He went from a gigging musician to someone who can’t do much by himself. As his primary caregiver I know (to the extent that I can) how painful it is to ask for help with basic tasks, to deal with the sudden loss of agency. I think that kind of pain and indignity dwarfs a lot of physical pain. It’s something I couldn’t wish for anybody on Earth. I think the only way to get through those things is to lean on loved ones, although for many that isn’t an option or it doesn’t come easily.
If there’s any silver lining to it, I guess I’d say you know what it’s like now, and you’re able to conceive of how it might be in the future, to lose your agency. It’s not much but if it happens again in the future (let’s all hope not) then you are more prepared than most.
I’m glad to know you have your wife (if not others) who cares about you, and I’m sure you know it’s always valid to let your feelings out honestly. Wishing you the best with your surgery 
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This is interesting, because I know just what you mean, but it hits me a bit different. I wonder if it might say something about our mindsets or different ways of seeing the world. (Or maybe that’s just philosophic TEDtalk bullshit because I’m high as fuck to battle the infusion nausea.)
What follows is kind of rambling because of that...
For me, it’s less the loss of agency to other people—I’m lucky to live near some of the top doctors in the nation, and I trust them. (Not all of them; 2 were complete assholes and 1 was just sort of useless, but living here means I have options.) Honestly, giving up my agency to them often feels like a relief.
It’s more the loss of agency to random chance, or my DNA or whatever. The universe. Just the idea that I don’t really have control over my body the way I thought I did. Or that it’s my body in control of me instead of the other way around.
The sense that there’s always been this timebomb ticking away in my bones, and defusing it is a question more of probability than anything anyone can actually do.
Sometimes It’s hard for me to think of myself as someone with a body, and not a person stuck in a body. Like I’m trapped in a glitchy machine. My encoders all have knob jitter and my RAM is corrupted.
It’s weird living in a thing that’s tried to kill you. It makes the body/mind relationship kind of awkward. (And also, I live in the USA, so I’m stuck in a body that’s tried to kill me, and stuck in a country that aggressively does not care if it succeeds. So the feeling of not being in control extends ever outward.)
I’m sure part of it is just getting older and everyone past 40 or so feels a little like this. I dunno. But I used to feel like I had real control over my body, back when I was young and fairly athletic and I took all that shit for granted. Now I really don’t and it spooks me.
There’s this comic book, Stray Bullets, and for a while its tag line was They Never Saw It Coming—They Never Had a Chance! That’s how I’ve felt recently. Not in control of my fate but just waiting to see what happens next.
I really feel for @m0ld here, and the pain you’re going through, @Fin25 . . . I remember what it was like after the first infusions when all I could do was wonder if the treatment was working or if I was in the % that were just shit out of luck. Turns out I was lucky, but I’m spooked by the other option even as I’m approaching remission and have days I can forget there’s anything wrong. I feel grateful but haunted.
My mom had bad arthritis and it kicked her ass as she got older. She still became a master gardener. She refused to let random chance keep her from doing what she wanted, but it was a struggle that took every ounce of her strength. She also grew to resent a lot of the friends who she relied on most. From where I am now, I wonder if it’s because she resented how much she had to rely on them.
My first mentor lost use of one arm in a machine-shop accident in his 20s, long before I met him. He’s still a better craftsman than I’ll ever be, despite being in pain pretty much constantly. Random chance conspiring against us again. But somehow (nohow) we go on.
I’m trying to forgive my body. In the meantime, I persevere as an act of protest against the universe itself.
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Thank you for writing all that. It struck a chord with me, there’s a lot of things in there that I’ve thought myself and some things that were helpful for me to read. I’d love to dialogue more about this when I regain my composure.
On topic: I accidentally deleted my previous response somehow. It’s incredible the things I manage to fat finger sometimes.
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My grammar and spelling is ridiculous, add the new contacts I got a bit ago and it’s fucking 10 times worse. Sometimes I can’t see shit.
I’ll go back and read a post and be like WTF is that!
Could also be all the booze and drugs but I’m blaming the contacts!
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It finally happened:
A Random idiot on TikTok said my music is MADE BY AI.
WHAT DA F****?
You literally see my hands and fingers playing the Elektrons.
The nerve…
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Ouch.
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Is your tiktok image the gibli picture? Maybe that’s the problem here.
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Future Internet archaeologists are going to be so confused by this sentence.
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Future? I’m confused now!
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Me too! Does this club come with a membership card, or…?
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you’d both prolly misspell your own names on your membership cards cause of fat fingering
(im just as guilty with my 3 fingered t-rex typing)
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