Warning: This post may be considered by some to be a downer, because I'm going to talk very candidly about life with a chronic illness that can cause high levels of pain and frustration. Do not, however, assume that I am down, because I'm not! Though I may have my moments, my hours, my days, or even my string of days when I'm just burnt out and tired of this whole shebang, overall it's something I'm coming to terms with and try to view as an opportunity for growth.
So. That being said...
The last few days were hard. I mean, really hard. And by really hard, I mean really really really really ridiculously difficult. I thought that I was being accurate before when I said I was "destroyed"... but I didn't know the meaning of destroyed. (Hopefully I won't have to learn new depths of that word!)
First of all, I've had a lot going on these past few weeks-- first the colonoscopy, which pretty much devastated me, mucho wedding prep (and I still haven't sat down with my fear of getting married and begun to really process through it in any meaningful way); long, stressful travel hours; the few days with D, coming to grips with his impending death and saying goodbye; the shock and disappointment of much-anticipated guests not being able to come to the wedding; more long, stressful travel hours; dealing with an increase in symptoms and pain levels and trying to cope with that... and then I ran out of pain meds.
I'm so grateful that I asked for painkillers and that my doctor prescribed me something without hesitation. Let's put it this way-- this morning I took 3 ibuprofen and never felt a thing. NSAIDS barely even put a major dent in my menstrual cramps, let alone this kind of pain.
I ran out of painkillers on the day I traveled back home. I was already hurting quite a bit when I went to bed, but the next day it had just increased. Today was even worse, especially because it's not just pain but nausea and balance problems and sleep problems and total brain fog and gut pain upon eating (whenever I can even get around to eating)... It sucks. As I thought back on it while submerged in my hot bath earlier, I came to the conclusion that if I didn't have these pain meds that actually worked, I would so not be willing to live life the way that I have the past few days. I am not joking. I could not do that long-term. I would literally seriously consider suicide if I had to do those pain levels and all the other stuff for an extended period of time.
See, the thing is that it wasn't just one kind of pain; it's a pain that has layers. The bottom layer is a generalized ache, like the kind you get when you have a bad fever. Everything hurts, whether you're moving or laying still, and your skin is super tender and it hurts to even have clothes pressing against your skin. Your scalp hurts, and even your teeth hurt. To have water splash your skin is a violent, painful shock, no matter the temperature. The weird part was that I had no fever at all, despite my obsessive checking. The next layer of pain is muscle pain; the general ache that flares into a protesting groan when you move anything, or roll over, or lay in one position too long, or have any sort of pressure anywhere on your body. The top layer is joint pain; the sharp, throbbing whine of the hip sockets, the lower-pitched but just as insistent flames that consume the knees, the delicate ripples of spasming electricity that lace their way through wrists, fingers, and ankles... and then there's the booming resonance that blasts its way through mid-back, all the way through to the solar plexus on the other side and wrapping around the ribs, reaching both upward and down in an attempt to consume the entire torso... And did I mention the chills? Freezing, yet sweating at the same time. I couldn't get warm, but I could barely stand to be wrapped up.
I know that everyone's personal pain tolerance is at different levels. For someone else, this may be totally bearable. For me, however, it was totally incapacitating. I have two pain scales-- one for uncommon events, such as car crashes and broken limbs and such, and another for every-day pain. On my "every day" pain scale, I was at about a 5.5 - 6.5 on my traveling day, then it went up to 7 - 8 the next day, and today was a solid 9 most of the day. I can't say 10, because the pain I was in after the colonoscopy had me literally sobbing and helpless, but it was definitely up there, especially with the multi-facted nature of the discomfort. You can see now why I was hounding my doctor's office and the pharmacy today. I think that if I had no prospect of relief, I would have just sucked it up and tried to find methods to cope... but knowing that there is something that can scale the pain back, well... It nearly drove me insane. I was so frustrated. But now that I've got some of that in my system, I'm back down to a 4-ish. That I can deal with. Anything 5 or below, I can pretty much function normally. Once you get above that, it's hard for me to concentrate on daily life or make myself carry on.
So I basically just laid in bed the past two days, except to go grocery shopping and go to school (with errands in between my classes). Now, though, I'm starting to feel like a human again! I have emotions! I have a whole range of facial expressions! I'm still limping, but I can move faster than a gimpy snail!
It is frustrating to realize that I've gone downhill so far... I had a couple of people bring it up to me while I was up north, and I was forced to face the reality of how far I've fallen, so to speak. It was discouraging, to be quite honest. But really? I'm trying my absolute best to be as healthy as I can and to take the measures necessary to boost my health back up. What else can I do? If I never get any better, it won't be for lack of trying, that's for sure!
I've noticed a pattern. It's not like I've just had this gradual slide down a hill, it's more like a set of stairs. I'll level out for a while, then something will drop me down, then I'll level out, then I'll drop again...
But C and I have talked about how to try to get me boosted back up, and he instituted the "one thing a day" rule the other day. For now, I am allowed to do one "thing" a day. Whether it's cleaning the kitchen or unpacking my suitcases or running errands, I must choose. I only get one. (I really only have the spoons for one.) As I get better, I can add things one at a time, but for now I get one. This is where the "Fiance" part of the title comes in. He is so good to me... not just in dealing with the baggage that I have from my past, but in dealing with this sickness. He helps me to see things logically and smoothly, rather than getting worked up (or worn down) by emotions. He also takes care of me in the physical sense, working with my food allergies, making sure I've taken my meds on time (because I sometimes forget), being considerate of my limitations... just generally being awesome and not minding all my setbacks. He is the one that bought me the Bling Chariot, after all, which is one of the best investments I've seen in a while. I use that thing all the time (sad to say).
That brings me to the Fears section. Sometimes I feel like I'm never gonna get any better, like I'm just going to keep taking those stairs downward until I'm a quivering heap under the bedclothes. Then I work myself back into encouragement through various means, but... the fear is still there, in the back of my head. Today before class I was chatting with a lady whose sister has fibro. It manifested when she was 20 as a result of a back injury sustained at work, and 15 years of fighting later, she's basically bedridden, in extreme pain. Again, it's not for lack of trying that she ended up this way... and that scares me. Because, really, it's like no matter how hard I try I'm just not gaining any headway against this monster that's taken over my life. It's so dumb! I'm so sick of being sick! I don't want to be a frail wreck, but if I step back and take a look at the reality of my situation... I am kinda frail. I am physically weak in many ways. I don't say this to admit defeat, but for the sake of a reality check. While it's important to be positive and to set good intentions and all that, it doesn't help anyone to live in denial and refuse to see the truth of the matter.
So, okay. Yeah. I am sick. Very sick, in fact. And it doesn't seem like my efforts are preventing the downward slippage much, if at all.
But C and I talked about what would happen if I did end up bedridden like my friend's sister. What would happen if I just kept spiraling downward?
Well... if it happens, it happens. Obviously, there isn't much we can do about it, so why worry?
That was C's response. I mean, I'm doing all I can, sooooo... if it happens, then it happens.
He doesn't believe in worrying about things you have no control over.
And you know what? I'm coming around to his point of view.
As things stand now, I'm a sick girl. Pretty darn sick, in fact. But, but, but, I am also a fighter, and I'm going to do my damndest to get better again. If it doesn't happen, then I'll have to deal with that. But again, it sure won't be for lack of trying! I really can't predict the future... but I know beyond a shadow of a doubt that I have a heck of a lot of wonderful people in my corner, cheering me on and praying me forward, and I also have a pretty amazing guy holding my hand and wiping my brow (and tears!) as I fight this battle for my future and my sanity.
As I said, while this can be seen as a downer, I see it as... I dunno. Something else. Reality, maybe? Dashed with a little spicy optimism? I believe in God, and I believe in miracles. I don't know if he'll give me one, but I do think that there are a lot of things we can consider miracles, if we just look at them in the right light. This healthy relationship, for one... that, to me, is a miracle. My amazingly supportive friends and family. A painkiller that helps me feel like a real person again. A job that I love and a boss that totally understands my health struggles and works with me. A dad willing to foot my medical bills so I can figure all this out and move forward. (And he's also the one paying for my prescriptions, which includes the miracle pain killer. You're my savior, if indirectly, R!)
My life is filled with good things. Sure, it's filled with challenges, but whose life isn't? Maybe mine are just different from someone else's.
I choose to view this framed in positivity, even if I do get frustrated sometimes, or worn down and worn out from the pain. Yeah, I do want to give up more frequently than I'd like to admit. But really? I know it's all gonna be okay, one way or another. Really, it will.
(Now please, remind me of this mindset the next time I'm flipping out, yeah?)
So. That being said...
The last few days were hard. I mean, really hard. And by really hard, I mean really really really really ridiculously difficult. I thought that I was being accurate before when I said I was "destroyed"... but I didn't know the meaning of destroyed. (Hopefully I won't have to learn new depths of that word!)
First of all, I've had a lot going on these past few weeks-- first the colonoscopy, which pretty much devastated me, mucho wedding prep (and I still haven't sat down with my fear of getting married and begun to really process through it in any meaningful way); long, stressful travel hours; the few days with D, coming to grips with his impending death and saying goodbye; the shock and disappointment of much-anticipated guests not being able to come to the wedding; more long, stressful travel hours; dealing with an increase in symptoms and pain levels and trying to cope with that... and then I ran out of pain meds.
I'm so grateful that I asked for painkillers and that my doctor prescribed me something without hesitation. Let's put it this way-- this morning I took 3 ibuprofen and never felt a thing. NSAIDS barely even put a major dent in my menstrual cramps, let alone this kind of pain.
I ran out of painkillers on the day I traveled back home. I was already hurting quite a bit when I went to bed, but the next day it had just increased. Today was even worse, especially because it's not just pain but nausea and balance problems and sleep problems and total brain fog and gut pain upon eating (whenever I can even get around to eating)... It sucks. As I thought back on it while submerged in my hot bath earlier, I came to the conclusion that if I didn't have these pain meds that actually worked, I would so not be willing to live life the way that I have the past few days. I am not joking. I could not do that long-term. I would literally seriously consider suicide if I had to do those pain levels and all the other stuff for an extended period of time.
See, the thing is that it wasn't just one kind of pain; it's a pain that has layers. The bottom layer is a generalized ache, like the kind you get when you have a bad fever. Everything hurts, whether you're moving or laying still, and your skin is super tender and it hurts to even have clothes pressing against your skin. Your scalp hurts, and even your teeth hurt. To have water splash your skin is a violent, painful shock, no matter the temperature. The weird part was that I had no fever at all, despite my obsessive checking. The next layer of pain is muscle pain; the general ache that flares into a protesting groan when you move anything, or roll over, or lay in one position too long, or have any sort of pressure anywhere on your body. The top layer is joint pain; the sharp, throbbing whine of the hip sockets, the lower-pitched but just as insistent flames that consume the knees, the delicate ripples of spasming electricity that lace their way through wrists, fingers, and ankles... and then there's the booming resonance that blasts its way through mid-back, all the way through to the solar plexus on the other side and wrapping around the ribs, reaching both upward and down in an attempt to consume the entire torso... And did I mention the chills? Freezing, yet sweating at the same time. I couldn't get warm, but I could barely stand to be wrapped up.
I know that everyone's personal pain tolerance is at different levels. For someone else, this may be totally bearable. For me, however, it was totally incapacitating. I have two pain scales-- one for uncommon events, such as car crashes and broken limbs and such, and another for every-day pain. On my "every day" pain scale, I was at about a 5.5 - 6.5 on my traveling day, then it went up to 7 - 8 the next day, and today was a solid 9 most of the day. I can't say 10, because the pain I was in after the colonoscopy had me literally sobbing and helpless, but it was definitely up there, especially with the multi-facted nature of the discomfort. You can see now why I was hounding my doctor's office and the pharmacy today. I think that if I had no prospect of relief, I would have just sucked it up and tried to find methods to cope... but knowing that there is something that can scale the pain back, well... It nearly drove me insane. I was so frustrated. But now that I've got some of that in my system, I'm back down to a 4-ish. That I can deal with. Anything 5 or below, I can pretty much function normally. Once you get above that, it's hard for me to concentrate on daily life or make myself carry on.
So I basically just laid in bed the past two days, except to go grocery shopping and go to school (with errands in between my classes). Now, though, I'm starting to feel like a human again! I have emotions! I have a whole range of facial expressions! I'm still limping, but I can move faster than a gimpy snail!
It is frustrating to realize that I've gone downhill so far... I had a couple of people bring it up to me while I was up north, and I was forced to face the reality of how far I've fallen, so to speak. It was discouraging, to be quite honest. But really? I'm trying my absolute best to be as healthy as I can and to take the measures necessary to boost my health back up. What else can I do? If I never get any better, it won't be for lack of trying, that's for sure!
I've noticed a pattern. It's not like I've just had this gradual slide down a hill, it's more like a set of stairs. I'll level out for a while, then something will drop me down, then I'll level out, then I'll drop again...
But C and I have talked about how to try to get me boosted back up, and he instituted the "one thing a day" rule the other day. For now, I am allowed to do one "thing" a day. Whether it's cleaning the kitchen or unpacking my suitcases or running errands, I must choose. I only get one. (I really only have the spoons for one.) As I get better, I can add things one at a time, but for now I get one. This is where the "Fiance" part of the title comes in. He is so good to me... not just in dealing with the baggage that I have from my past, but in dealing with this sickness. He helps me to see things logically and smoothly, rather than getting worked up (or worn down) by emotions. He also takes care of me in the physical sense, working with my food allergies, making sure I've taken my meds on time (because I sometimes forget), being considerate of my limitations... just generally being awesome and not minding all my setbacks. He is the one that bought me the Bling Chariot, after all, which is one of the best investments I've seen in a while. I use that thing all the time (sad to say).
That brings me to the Fears section. Sometimes I feel like I'm never gonna get any better, like I'm just going to keep taking those stairs downward until I'm a quivering heap under the bedclothes. Then I work myself back into encouragement through various means, but... the fear is still there, in the back of my head. Today before class I was chatting with a lady whose sister has fibro. It manifested when she was 20 as a result of a back injury sustained at work, and 15 years of fighting later, she's basically bedridden, in extreme pain. Again, it's not for lack of trying that she ended up this way... and that scares me. Because, really, it's like no matter how hard I try I'm just not gaining any headway against this monster that's taken over my life. It's so dumb! I'm so sick of being sick! I don't want to be a frail wreck, but if I step back and take a look at the reality of my situation... I am kinda frail. I am physically weak in many ways. I don't say this to admit defeat, but for the sake of a reality check. While it's important to be positive and to set good intentions and all that, it doesn't help anyone to live in denial and refuse to see the truth of the matter.
So, okay. Yeah. I am sick. Very sick, in fact. And it doesn't seem like my efforts are preventing the downward slippage much, if at all.
But C and I talked about what would happen if I did end up bedridden like my friend's sister. What would happen if I just kept spiraling downward?
Well... if it happens, it happens. Obviously, there isn't much we can do about it, so why worry?
That was C's response. I mean, I'm doing all I can, sooooo... if it happens, then it happens.
He doesn't believe in worrying about things you have no control over.
And you know what? I'm coming around to his point of view.
As things stand now, I'm a sick girl. Pretty darn sick, in fact. But, but, but, I am also a fighter, and I'm going to do my damndest to get better again. If it doesn't happen, then I'll have to deal with that. But again, it sure won't be for lack of trying! I really can't predict the future... but I know beyond a shadow of a doubt that I have a heck of a lot of wonderful people in my corner, cheering me on and praying me forward, and I also have a pretty amazing guy holding my hand and wiping my brow (and tears!) as I fight this battle for my future and my sanity.
As I said, while this can be seen as a downer, I see it as... I dunno. Something else. Reality, maybe? Dashed with a little spicy optimism? I believe in God, and I believe in miracles. I don't know if he'll give me one, but I do think that there are a lot of things we can consider miracles, if we just look at them in the right light. This healthy relationship, for one... that, to me, is a miracle. My amazingly supportive friends and family. A painkiller that helps me feel like a real person again. A job that I love and a boss that totally understands my health struggles and works with me. A dad willing to foot my medical bills so I can figure all this out and move forward. (And he's also the one paying for my prescriptions, which includes the miracle pain killer. You're my savior, if indirectly, R!)
My life is filled with good things. Sure, it's filled with challenges, but whose life isn't? Maybe mine are just different from someone else's.
I choose to view this framed in positivity, even if I do get frustrated sometimes, or worn down and worn out from the pain. Yeah, I do want to give up more frequently than I'd like to admit. But really? I know it's all gonna be okay, one way or another. Really, it will.
(Now please, remind me of this mindset the next time I'm flipping out, yeah?)
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