I'm Not Fibbing, It's the Truth!
I get real fed up with the way we try to simplify things most people don't understand. My point for this: fibromyalgia. Often, on websites, ads and book covers for fibro information, you'll see a person (most often a woman) holding a shoulder joint or something, with a rather unpleasant look on her face. She's clearly in some type of pain.
But this is misleading. In the extreme.
If you were to more accurately portray in a single picture what fibromyalgia feels like, you'd show a person curled up in the fetal position in a dimly lit corner of the room silently screaming in pain.
Depicting a person experiencing discomfort like you often see in fibro ads and such, you get the impression that fibro is more like a minor ache in a localized part of the body. A typical person might say, "So what? Doesn't everybody get that sometime? Stop spending so much time in front of the computer, take a few Tylenol, get some rest, and you'll be okay in about a week."
So very wrong. Fibro won't just go away in a few days. It's chronic. If you are diagnosed with it, you can pretty much be confident that you'll have to live with it for the rest of your life. Yes, there are going to be days where you won't experience the bone-deep pain and extreme exhaustion as badly as others. But pretty much you have to realize that you won't always be able to do things you were able to do even a short time ago.
You know, most people will feel tired after an 8 hour shift on the job. Most people would reach the point they'd confidently call "exhausted" if they spent the entire day hiking, working a 12 hour shift at a labor-intensive job, or being subjected to recovery efforts in the aftermath of a natural disaster. With fibro, all you need to do to feel that deep weary feeling is wake up in the morning. After getting out of bed and so much as pouring a bowl of cereal for breakfast, you feel like your day is half over. The only energy you can spend will get you right back into bed for another 18 hours of sleep. Even if you just had 21 hours of deep, uninterrupted sleep. It often takes more than what you've got in you to cook, clean house or run errands. Often, as with the case with me, by the time you make it to your regular doctor's appointment, you're more than half spent energywise. When you're ready to head home, you're about five minutes from total burnout, and you still have a half hour drive home (or in my case, an hour and a half bus ride.)
The most insidious aspect of it is this: it's a vicious cycle of the most cruel kind. Fibromyalgia, just the physical aspects of it, can make even a strong, happy person extremely depressed. You're often so depressed and so tired that you can't even get out of the house. And because you can't get out to socialize, meet with friends and family, you tend to isolate. Isolation tends to bring on depression. And it cycles on and on ad nauseum. You spiral down into deeper depression because you can't live a so-called "normal" life, and you can't even pretend to live a normal life because you are trapped inside your own broken body.
The really maddening part about all this is that there are actually medical providers out there who don't believe fibromyalgia is real. They'll call it "major depression" or "chronic fatigue syndrome" or "hypochondriosis," which means "patient is making this up, needs psychiatric help." True, major clinical depression has manifestations in the physical body; it goes way beyond "the blues." Chronic fatigue syndrome can make a person seem depressed, too. But these conditions don't have aspects that are common in fibromyalgia. Then the question comes down to, "Well, I might have depression AND arthritis AND irritable bowel syndrome AND just be naturally sensitive to chemcials, but isn't that a good starting description of what fibromyalgia IS?" If it walks like a duck, quacks like a duck, swims like a duck, flies like a duck... why not call it a duck?
I'm sure I'm not a unique case, however. I'm not putting this out there to say "Oh, poor me! I've got this big ol' checklist of problems so everyone can feel sorry for me!" I don't need pity. I need to write about this. But in addition to fibro, I've got at least three other chronic conditions going on besides. I also have diabetes, asthma, and biploar type 2. The long and short of it: I'm beginning to realize that, while I've never had an average life, I never will have an average life. Ever. And these are just the physical problems. I won't even touch upon the psychological apects or even go into the gender dysphoria and sexual orientation bits. Any one of these problems alone would be a large platter of problems for a single individual to deal with. I don't want pity; I've got enough of that for myself.
If I had a kingdom, I would give it just for a little relief.
Is it any wonder... I mean, can anyone truly fault me? Is it any wonder I can barely get out of bed most days? Because I have to fight three times harder than the average person just to do, have and be what most everyone else takes for granted. I can't tell you how many times, each and every day, it doesn't cross my mind, even arbitrarily, how it might be just to end it all right here, right now. I try not to go down that road because I have been there before. It was not pleasant, to put it VERY mildly. And, honestly, I don't know why I keep going on, except that my mere existence pisses off exactly the right people. Also, the idea of actually doing myself in, or putting myself in a position where my life would be endangered, doesn't appeal to me. It's not that I hope somewhere deep down that one day things will all be better and sunnier. I can't hope for that at all. Basically, the cards I've been dealt in this game of life are the ones I'll have to play. They're not very good cards. I can't even hope to make the best of them. I don't know if I'll ever be happy. Hell, I know I'm not happy now. I can't remember if I've ever been happy.
I'm just here. I just exist. This is also one reason why I don't fear any kind of afterlife. If Hell existed, it can't possibly be any worse than life is for me right here, right now. I suspect that nothing happens after death, but I'm not leaping for the chance to test that hypothesis, either. There may very well be something I can do in the future. There may be a slim chance of complete, catastrophic scientific breakthrough that will improve the quality of my life, even somewhat. I may even be able to change the world in some small way that will make all the difference. I don't want to check out too early, just in case. But in the meantime, I am doing my best with what I have to work with. If anyone doubts me, you are more than welcome to try on my moccasins and walk a mile with me. I don't consider myself any greater or lesser a person for being this and experiencing what I do. But I feel confident enough to wager that if you did walk a mile in my shoes you'd feel very much the same way I do about life. I don't pretend to have a handle on my life or all my sticks in a line. I believe I am doing the best I can with what I've got to work with, which isn't much.
Now, if you'll excuse me, I have to go lie down. I've been awake 14 hours and in pain the entire time.
But this is misleading. In the extreme.
If you were to more accurately portray in a single picture what fibromyalgia feels like, you'd show a person curled up in the fetal position in a dimly lit corner of the room silently screaming in pain.
Depicting a person experiencing discomfort like you often see in fibro ads and such, you get the impression that fibro is more like a minor ache in a localized part of the body. A typical person might say, "So what? Doesn't everybody get that sometime? Stop spending so much time in front of the computer, take a few Tylenol, get some rest, and you'll be okay in about a week."
So very wrong. Fibro won't just go away in a few days. It's chronic. If you are diagnosed with it, you can pretty much be confident that you'll have to live with it for the rest of your life. Yes, there are going to be days where you won't experience the bone-deep pain and extreme exhaustion as badly as others. But pretty much you have to realize that you won't always be able to do things you were able to do even a short time ago.
You know, most people will feel tired after an 8 hour shift on the job. Most people would reach the point they'd confidently call "exhausted" if they spent the entire day hiking, working a 12 hour shift at a labor-intensive job, or being subjected to recovery efforts in the aftermath of a natural disaster. With fibro, all you need to do to feel that deep weary feeling is wake up in the morning. After getting out of bed and so much as pouring a bowl of cereal for breakfast, you feel like your day is half over. The only energy you can spend will get you right back into bed for another 18 hours of sleep. Even if you just had 21 hours of deep, uninterrupted sleep. It often takes more than what you've got in you to cook, clean house or run errands. Often, as with the case with me, by the time you make it to your regular doctor's appointment, you're more than half spent energywise. When you're ready to head home, you're about five minutes from total burnout, and you still have a half hour drive home (or in my case, an hour and a half bus ride.)
The most insidious aspect of it is this: it's a vicious cycle of the most cruel kind. Fibromyalgia, just the physical aspects of it, can make even a strong, happy person extremely depressed. You're often so depressed and so tired that you can't even get out of the house. And because you can't get out to socialize, meet with friends and family, you tend to isolate. Isolation tends to bring on depression. And it cycles on and on ad nauseum. You spiral down into deeper depression because you can't live a so-called "normal" life, and you can't even pretend to live a normal life because you are trapped inside your own broken body.
The really maddening part about all this is that there are actually medical providers out there who don't believe fibromyalgia is real. They'll call it "major depression" or "chronic fatigue syndrome" or "hypochondriosis," which means "patient is making this up, needs psychiatric help." True, major clinical depression has manifestations in the physical body; it goes way beyond "the blues." Chronic fatigue syndrome can make a person seem depressed, too. But these conditions don't have aspects that are common in fibromyalgia. Then the question comes down to, "Well, I might have depression AND arthritis AND irritable bowel syndrome AND just be naturally sensitive to chemcials, but isn't that a good starting description of what fibromyalgia IS?" If it walks like a duck, quacks like a duck, swims like a duck, flies like a duck... why not call it a duck?
I'm sure I'm not a unique case, however. I'm not putting this out there to say "Oh, poor me! I've got this big ol' checklist of problems so everyone can feel sorry for me!" I don't need pity. I need to write about this. But in addition to fibro, I've got at least three other chronic conditions going on besides. I also have diabetes, asthma, and biploar type 2. The long and short of it: I'm beginning to realize that, while I've never had an average life, I never will have an average life. Ever. And these are just the physical problems. I won't even touch upon the psychological apects or even go into the gender dysphoria and sexual orientation bits. Any one of these problems alone would be a large platter of problems for a single individual to deal with. I don't want pity; I've got enough of that for myself.
If I had a kingdom, I would give it just for a little relief.
Is it any wonder... I mean, can anyone truly fault me? Is it any wonder I can barely get out of bed most days? Because I have to fight three times harder than the average person just to do, have and be what most everyone else takes for granted. I can't tell you how many times, each and every day, it doesn't cross my mind, even arbitrarily, how it might be just to end it all right here, right now. I try not to go down that road because I have been there before. It was not pleasant, to put it VERY mildly. And, honestly, I don't know why I keep going on, except that my mere existence pisses off exactly the right people. Also, the idea of actually doing myself in, or putting myself in a position where my life would be endangered, doesn't appeal to me. It's not that I hope somewhere deep down that one day things will all be better and sunnier. I can't hope for that at all. Basically, the cards I've been dealt in this game of life are the ones I'll have to play. They're not very good cards. I can't even hope to make the best of them. I don't know if I'll ever be happy. Hell, I know I'm not happy now. I can't remember if I've ever been happy.
I'm just here. I just exist. This is also one reason why I don't fear any kind of afterlife. If Hell existed, it can't possibly be any worse than life is for me right here, right now. I suspect that nothing happens after death, but I'm not leaping for the chance to test that hypothesis, either. There may very well be something I can do in the future. There may be a slim chance of complete, catastrophic scientific breakthrough that will improve the quality of my life, even somewhat. I may even be able to change the world in some small way that will make all the difference. I don't want to check out too early, just in case. But in the meantime, I am doing my best with what I have to work with. If anyone doubts me, you are more than welcome to try on my moccasins and walk a mile with me. I don't consider myself any greater or lesser a person for being this and experiencing what I do. But I feel confident enough to wager that if you did walk a mile in my shoes you'd feel very much the same way I do about life. I don't pretend to have a handle on my life or all my sticks in a line. I believe I am doing the best I can with what I've got to work with, which isn't much.
Now, if you'll excuse me, I have to go lie down. I've been awake 14 hours and in pain the entire time.