[rl/health] remember that trend a few years back around “1000 degree” knives? Picture that knife. Change its shape into a screwdriver. Proceed to stab it into your lower back, directly into your spinal cord, right above your butt. Leave it there. It’s burning you every second it’s in your skin. It is agonizing. It is not possible to be comfortable. To rest.
Every so often I just have this desperate desire for abled people to grasp what it’s like. How debilitating it can be. When you’re not chronically ill it can be extremely hard to picture what it feels like. I hope this is illuminating for folks.
god. I know my painkillers have entered by bloodstream because I’m feeling the sedative effects. But the pain hasn’t abated at all. It is still burning. It’s burning
it’s really hitting me that we may actually be heading for surgery and the thought of it makes me want to crawl out of my own skin and hide in a hole in Siberia for the rest of my life
It’s not actually guaranteed I’ll be getting surgery, that’s just what we’re thinking right now. But it’ll depend on what the CT scan shows. We will be doing SOMETHING, but if it’s not the surgery we’ll have to find out what our other options are.
I keep, like, allowing myself to have hope, to make plans, to say “we’ll find a way,” and I am always wrong. I’ve been wrong for 20 years. If this latest attempt doesn’t work.... I dunno. I will probably give up on it, lol.
The cause is actually pretty simple. I have two bulging discs in my back. We noticed them first like five years ago and they have gotten significantly worse/more pronounced since then.
A huge part of the problem is that it started when I was so young. My late twenties, more or less. generally no one wants to resort to a spinal fusion on a person so young, and in fact I’ve had many doctors outright refuse to consider it because of my age.
though of course that said I’m not like, bitter or torn up about that lol, spinal fusion is such a massive intensive surgery. It really SHOULD be a last result.
I think my issue is more like 1) the fact that people present my age as a barrier FIRST before the risks as a problem tells me where their priorities or at least prejudices are, and that part fucking sucks. it’s just one type of ageism and I’ve dealt with it all my life since I became disabled when I was so young
Yeah, of course. I know that. My fear of surgery is more phobia than apprehension. I’ve had so many surgeries I almost instantly panic at the thought of another.
It’s completely illogical. Rationally I know any solution that can help should be explored and if it’s a viable avenue that may actually provide me relief then there’s no question in doing it.
Oh! But I have an appointment with a new pain management doctor coming up soon as well. I may be able to get (or need to get depending on how far out the surgery is) another pain management epidural, and this time from folks who won’t accidentally spinal tap me.
So it’s seeming like after the first or second week of October we should be hopefully be seeing a much clearer picture of what the way forward looks like.
so you’ve got this horrible burning thing in your back. since it’s a big honking screwdriver or whatever, it makes finding a comfortable position very hard--no matter what you do, you will jostle that screwdriver the tiniest bit and the punishment for it is immediate. Standing, sitting, walking, lying down, on my side, doesn’t matter.
All these things do is twist this horrible fucking burning thing in your spine in different ways. different pains. not reduced, not less. just different.
However, a silver lining!: simply cool down this horror in your back, and the burning will stop. The pain will lessen. It really is very similar to putting ice on, say, a swollen knee or something. You’re literally cooling down the burning and irritation.
for me, nothing. solutions that work for hundreds of thousands of people do not work for me. My tolerance to pain medications is so high that nothing works short of a dilaudid IV drip, and frankly even then there’s only some relief.
I’m just ... tired. This is almost beat for beat how my dad became a drug addict. he had a horrible, HORRIBLE injury in his teens, they gave him painkillers ... yeah.
I hope for good news too, Pip pain is such a transient, in the moment concept for most people so chronic pain is hard to envision, you're absolutely right
ugh. Sorry guys. I just ... I dunno. I’m just repeating myself saying I just want abled people to try and understand, REALLY try and picture it, what living like this must be like. and then whatever you imagine? is probably actually worse in reality. lol. idk.
I have to confess that the last few weeks I have been getting really high CONSTANTLY as a way to ward all this off. (never during work of course: this is specifically to help me sleep actually.) But I always hit a limit with marijuana too.
Like, my tolerance does its same wonderful exponential increase while the drug itself can only increase in a linear fashion and I wish I was dead but the reason I have to stop it now is actually different. I’m extremely sensitive to the... “taste” of drugs? like I HATE the taste of alcohol. the taste of marijuana to me is just as bad if not worse.
even worse, the only kind that seems to work on me, and kick in relatively quickly instead of 6 fucking hours later (that has indeed happened to me, several times), is a tincture. which you would in your mouth.
last time I took it i threw up so that’s over for the next three months. I always fucking run out of solutions, or am robbed of them in some way. every single fucking time.
I just. I wish I was dead. I don’t know how much more of this I can take, god fucking dammit. but oh no look at that pip is suicidal again! what else is new.
Alan Sleep
: Mmmmmmhm. Or lying. I’ve had soooooo many people accuse me of lying to get the “perks” (like getting on the plane before anyone else or whatever). yeah, the “””perks”””” are definitely worth the trade off of losing the prime of my life!
But yeah, with people like that it's just like "would you like to feel what it's like to feel like someone is stabbing YOU in the eye with an ice pick?"
my coworkers, however, go on and on about CBD lotion for aches and pains. I have no idea if it would even touch your disc pain but at least you don't have to eat it!!
but ... yeah, exactly. sometimes o just really want people to try to understand what it’s like to live in our bodies. even the most remote inkling of how they’d feel if they lived with constant pain or sickness...
yousoro!
: oh my god right? It’s awful! Why do all drugs taste so fucking awful!!!!!!!!
my best other option would be smoking, yeah, but anything with an even moderately high THC count sends me into coughing fits. I’ve found smoking very hard to get accustomed to
yeah. or just like... shift their perspective, you know? gain an appreciation of what it’s like to live this way. I kind of want people to think about how they themselves would react if this was happening to them, you know?
bc once you understand your own response to something like this, you can have a much easier time extrapolating to others and being like “oh. oh. I get it now.”
And I think the other thing most people don't understand is that when you've had to develop a much higher baseline pain tolerance than other people, if you're saying you're in pain, it means you're REALLY IN PAIN
𝔪𝔢𝔪𝔢𝔫𝔱𝔬💀𝔪𝔬𝔯𝔞𝔶
: you know dude, I still remember when I first told you that I was sick or disabled or whatever it was, and how genuinely angry you were at how unfair it was. I’ve NEVER forgotten that and it was like ... a really ... really long time ago (god holy shit were old)
I have tried CBD! No luck, sadly. My high tolerance extends to stuff like CBD as well. It’s unfortunate. but thank you for suggesting it, I honestly really appreciate that!
i am so sorry that you have to not only deal with your chronic illness but also with complete assholes who try to demean what you're going through. i really do wish that i could properly understand so i could know more what it's like to be in your shoes. hang in there, twin, i really hope that things will improve somehow. i want the best for you
my best other option would be smoking, yeah, but anything with an even moderately high THC count sends me into coughing fits. I’ve found smoking very hard to get accustomed to