It's an interesting phenomenon, chronic illness... and the chronic pain that comes with it.
It's like everything in your life is rearranged and slightly skewed from normal... like living in your very own Twilight Zone. Everything seems familiar, but there's just something "off" that sends a little shiver of fear down your spine, and you can't quite put your finger on it...
I'm finding that chronic illness has tweaked a lot of my definitions, and it weirds me out.
For instance, my definition of "sick"...
Yesterday, I ended up in excruciating pain come evening. The kind of pain that has you gasping yet trying not to breathe and contemplating whether you can physically make the trip to the hospital. And crying. Definitely crying. No exaggeration. (Oh, how I miss living right across from the hospital in some regards!)
Also, before all of that "I'm in horrific pain", there was the unrelenting exhaustion that made it difficult to put one foot in front of the other, yet your body is feeling juuuuust crappy and painful enough to keep you from sleep. Don't forget that the longer you're awake and moving, though, the more pain you'll be in, as a general rule. (A strong painkiller obtained from undisclosed origins did the trick for that one.)
So today I wasn't as exhausted or in as much pain as yesterday, therefore by comparison I'm okay today. I'm not "sick", and I have no legitimate excuse to lie around and rest, because I'm doing better, and rest from what?? It's not like I did anything. But I am still occupying that grey wasteland between "I feel terrible please kill me and put me out of my misery" and "I feel well enough to be up and about".
However, I got super sick during acupuncture and went home early. Halfway through the session I got very nauseous, dizzy, and began having abdominal cramps and chest and back pains. I made if off of the table and out to the lobby, but I couldn't drive myself home so I called C. While he was on his way, I almost had a panic attack because of how terrible I was feeling. C picked me up, took me home, and cooked me broccoli. I took a nap. My pain levels have increased to just shy of "I can't handle this", because I've been laying down. If I get up and move around, they'll shoot up to unmanageable levels. I found that out when I went to the bathroom.
It's interesting how my definition of "sick" and "pain" have changed... and seem to shift on a daily basis. Some days, pain is a thing that I can put on my game face and deal with. I'm a warrior! Ooh-rah! (Pounding of chest) I'm such a badass and an inspiration! Other days, pain is just not something I can handle, nails on a chalkboard, and I shamefully gulp down the pain killers to hide my weakness. I don't feel that I have a right to consider myself sick, since this is my new normal. I'm only sick if it's beyond what I deal with on a regular basis. If I feel terrible, but it's a normal terrible, well then... I should (aha! there's the rub!) be able to just suck it up and deal, right?
Yet I can't help but think that if my condition were to be transferred to someone else, it would reduce them to a whimpering puddle of sadness and narcotics. And then I don't feel so bad about myself.
I guess I just want to know that I'm doing okay, that I'm not a bad person or a druggie for taking painkillers to get any relief from the unrelenting pain (because it's literally there 24/7), and that I'm actually sick. Yes, to my shame, I would like validation that I'm as sick as I secretly think that I am. I like to pretend that I'm okay and can handle life, because that's what people like to see and hear-- that's what they need to see and hear, because the reality of illness and pain that doesn't go away is very, very uncomfortable for most people to acknowledge. There has to be a cure! And if I've resigned myself to simply surviving in this ravaged carapace (for example, by taking pain killers to cope), then I've given up and I'm a bad patient. I've failed at being sick. (Can you even do that???) I'm no inspiration; there will be no movies made about my life. The American dream of being a legend, an urban hero, will not be realized in my life... because I've given up. I've turned my attention from banishment of symptoms to management of sanity.
In a culture accustomed to relegating disease and pain to the "acute" category and expecting quick recoveries, long term pain is a confusing place to live. If you can't fix it, then... well... obviously you're not trying hard enough!
And those are just a few of the messages that I'm bombarded with so frequently, internally and externally.
The Twilight Zone, I tell you. It almost makes sense, but not quite.
No, actually, it doesn't. It doesn't at all.
It's like everything in your life is rearranged and slightly skewed from normal... like living in your very own Twilight Zone. Everything seems familiar, but there's just something "off" that sends a little shiver of fear down your spine, and you can't quite put your finger on it...
I'm finding that chronic illness has tweaked a lot of my definitions, and it weirds me out.
For instance, my definition of "sick"...
Yesterday, I ended up in excruciating pain come evening. The kind of pain that has you gasping yet trying not to breathe and contemplating whether you can physically make the trip to the hospital. And crying. Definitely crying. No exaggeration. (Oh, how I miss living right across from the hospital in some regards!)
Also, before all of that "I'm in horrific pain", there was the unrelenting exhaustion that made it difficult to put one foot in front of the other, yet your body is feeling juuuuust crappy and painful enough to keep you from sleep. Don't forget that the longer you're awake and moving, though, the more pain you'll be in, as a general rule. (A strong painkiller obtained from undisclosed origins did the trick for that one.)
So today I wasn't as exhausted or in as much pain as yesterday, therefore by comparison I'm okay today. I'm not "sick", and I have no legitimate excuse to lie around and rest, because I'm doing better, and rest from what?? It's not like I did anything. But I am still occupying that grey wasteland between "I feel terrible please kill me and put me out of my misery" and "I feel well enough to be up and about".
However, I got super sick during acupuncture and went home early. Halfway through the session I got very nauseous, dizzy, and began having abdominal cramps and chest and back pains. I made if off of the table and out to the lobby, but I couldn't drive myself home so I called C. While he was on his way, I almost had a panic attack because of how terrible I was feeling. C picked me up, took me home, and cooked me broccoli. I took a nap. My pain levels have increased to just shy of "I can't handle this", because I've been laying down. If I get up and move around, they'll shoot up to unmanageable levels. I found that out when I went to the bathroom.
It's interesting how my definition of "sick" and "pain" have changed... and seem to shift on a daily basis. Some days, pain is a thing that I can put on my game face and deal with. I'm a warrior! Ooh-rah! (Pounding of chest) I'm such a badass and an inspiration! Other days, pain is just not something I can handle, nails on a chalkboard, and I shamefully gulp down the pain killers to hide my weakness. I don't feel that I have a right to consider myself sick, since this is my new normal. I'm only sick if it's beyond what I deal with on a regular basis. If I feel terrible, but it's a normal terrible, well then... I should (aha! there's the rub!) be able to just suck it up and deal, right?
Yet I can't help but think that if my condition were to be transferred to someone else, it would reduce them to a whimpering puddle of sadness and narcotics. And then I don't feel so bad about myself.
I guess I just want to know that I'm doing okay, that I'm not a bad person or a druggie for taking painkillers to get any relief from the unrelenting pain (because it's literally there 24/7), and that I'm actually sick. Yes, to my shame, I would like validation that I'm as sick as I secretly think that I am. I like to pretend that I'm okay and can handle life, because that's what people like to see and hear-- that's what they need to see and hear, because the reality of illness and pain that doesn't go away is very, very uncomfortable for most people to acknowledge. There has to be a cure! And if I've resigned myself to simply surviving in this ravaged carapace (for example, by taking pain killers to cope), then I've given up and I'm a bad patient. I've failed at being sick. (Can you even do that???) I'm no inspiration; there will be no movies made about my life. The American dream of being a legend, an urban hero, will not be realized in my life... because I've given up. I've turned my attention from banishment of symptoms to management of sanity.
In a culture accustomed to relegating disease and pain to the "acute" category and expecting quick recoveries, long term pain is a confusing place to live. If you can't fix it, then... well... obviously you're not trying hard enough!
And those are just a few of the messages that I'm bombarded with so frequently, internally and externally.
The Twilight Zone, I tell you. It almost makes sense, but not quite.
No, actually, it doesn't. It doesn't at all.
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