So it's been well over a week since my last post, which I'm feeling pretty guilty about. Hopefully this doesn't mean that my blog, and all it's good intentions, is going to disappear from the minds and hearts of my readers. But to be honest, it's been a really rough couple of weeks, and I'm committed to *not* making this blog a sounding board for all my pains and ailments. There's a enough of that on the internet as it is. This blog is about showing that it is possible to have a fun and fulfilling life with a chronic illness, and then figuring out how to do all that.
But since it's been so long, and I think there are ways to talk about the bad sides of FMS without regressing into complainy mode, I want to write again, even if I don't have a lot new to report.
First of all, here is the report on the latest elimination challenge: caffeine.
I started a no-caffeine diet last Monday, and discovered that it's a really bad idea to go off caffeine on a Monday morning when you're in grad school. I think I only lasted a day and a half. I started again on Saturday, and it's been going easier. However, 6 days in, I don't think I need to cut caffeine out in a major way. My sleep quality still sucks even without stimulants. And having some tea now and then would really help me focus (which I really need for my job!) . Coffee is really acidic and makes you jittery, but tea (black, green, mate, etc) is high in antioxidants and gives you a more mellow energy. Sticking with tea is probably the way to go. But I'll wait til Saturday to start doing that. Next elimination will be alcohol. Darn.
But honestly, the caffeine thing is the least of my worries. Lately everything has felt really overwhelming: school stuff, relationship stuff, house stuff, cat stuff, money stuff, and of course, fibromyalgia pain and fatigue and mental confusion makes it impossible to get a grasp on any of this. Like I said, I don't want this blog to be a place where i whine about the crappy stuff in my life. But maybe during bad periods I could start to articulate things that are unique to the experience of having FMS. Right now I'm obsessed with this idea that pain defies language, and that it requires a lot of thought and care to figure out how to communicate the experience of your pain, and a lot of attentiveness on the listener's part to imaginatively reconstruct that experience. I think the sharing and the listening (or reading) makes for a profound ethical moment, so if you're reading, thanks!
One of the strangest things about fibromyalgia is that the pain is unlike any other kind of pain one would "normally" experience. If you don't know you have FMS, it's terrifying and alienating. As I said before, I think I've had this for a long time, possibly my whole life, and I remember feeling weird and ashamed that over the counter pain meds, or even prescription strength NSAIDS, would do nothing for me. I remember telling my podiatrist last year, after she diagnosed me with an orthopedic foot problem and made me wear these special custom insoles, that the insoles hurt 100 times worse than bare feet. She told me that I was "wrong" (about my own pain!) and that I had to keep wearing the shoes (turns out she was wrong! haha). I remember having full MRI scans of both my feet, which showed that they were normal, and freaking out that I couldn't walk half a block without being in excruciating pain. and didn't know why If you don't know what's going on, or even if you do, the pain can make you feel crazy.
But a lot of FMS sufferers, it seems, go through this process before they get diagnosed, because the logic of the pain is so much different from any other pain, be it from an illness, injury, arthritis, soreness from working out, etc. It feels like it has a mind of its own. I'm starting to think of it as a demon. It's a demon because it's a burning pain. Have you ever spent too long with a hot water pack, or put your hand on a car steering wheel on a hot day, and you feel this minor, but pervasive sensation on your skin that's somewhere between tolerably hot and burning? Now imagine that feeling but under your skin, and imagine that it you can feel it move through your body. Imagine that at times, your whole body feels like that. Or: hold your arms at a 45 degree angle, like you're making a "Y" in the "YMCA" dance, if you hold it there for a long time, you'll feel a searing pain in your shoulders Now imagine if your shoulders, or any other parts of your body, just felt like that, out of nowhere.
It's a demon because it stabs. Imagine that at all points of the day, somewhere in your body, you have at least one really sharp pain. Like, in your big toe, or your armpit, or your knees. Just an episode of sharp, sudden, throbbing pain. Like a side cramp, but it could be anywhere, and it's not caused by anything. To me, it feels like there's a little demon inside me, bouncing around, angry about something or other all the time, and taking it out on my body. As a demon, it doesn't respond to any earthly remedy (like ibuprofin), and it takes many forms (most of them "burning" or "stabbing"), and really feels like it has a mind of its own.
I, like other FMS sufferers, think the pain is far worse than a more "normal" kind of pain (though maybe not a gunshot wound, or childbirth, or a torn ACL). However, I don't think the intensity is that bad, but rather that the weirdness of it makes it feel like you are being attacked from the inside. It feels like somebody is doing something to you on purpose at all times, and you don't know who they are and you don't know why and you don't know what they're going to do next. So that's why I picture a demon.
What's the best way to conquer a pain that's demonic? So far the best things I've found are acupuncture and yoga. Western medicine doesn't know how to wrap its brain around the idea of pain that moves and is not inflammatory, but acupuncture gets it, it all has to do with the flow of qi. Yoga is good because I get to be hard on my body before the pain demon does; I envision the really intense stretches and challenging poses as forcing the demon into submission. The next day, if all goes well, all I will feel is the muscle soreness from exercise, and it's fantastic. Much less fibro pain, my body is at peace with itself. But it never really goes away, and that's something i don't know how to deal with yet...
To end on a positive note, here are some things that have made me happy this week: my amazing supportive parents, 7th Street Yoga, mamaki tea, Gabriel Marcel, and Acupuncture for the People (www.acupunctureforthepeople.org). Thanks to all who are reading my crazy rant about pain-demons. Next post will be less ridiculous, hopefully.
But since it's been so long, and I think there are ways to talk about the bad sides of FMS without regressing into complainy mode, I want to write again, even if I don't have a lot new to report.
First of all, here is the report on the latest elimination challenge: caffeine.
I started a no-caffeine diet last Monday, and discovered that it's a really bad idea to go off caffeine on a Monday morning when you're in grad school. I think I only lasted a day and a half. I started again on Saturday, and it's been going easier. However, 6 days in, I don't think I need to cut caffeine out in a major way. My sleep quality still sucks even without stimulants. And having some tea now and then would really help me focus (which I really need for my job!) . Coffee is really acidic and makes you jittery, but tea (black, green, mate, etc) is high in antioxidants and gives you a more mellow energy. Sticking with tea is probably the way to go. But I'll wait til Saturday to start doing that. Next elimination will be alcohol. Darn.
But honestly, the caffeine thing is the least of my worries. Lately everything has felt really overwhelming: school stuff, relationship stuff, house stuff, cat stuff, money stuff, and of course, fibromyalgia pain and fatigue and mental confusion makes it impossible to get a grasp on any of this. Like I said, I don't want this blog to be a place where i whine about the crappy stuff in my life. But maybe during bad periods I could start to articulate things that are unique to the experience of having FMS. Right now I'm obsessed with this idea that pain defies language, and that it requires a lot of thought and care to figure out how to communicate the experience of your pain, and a lot of attentiveness on the listener's part to imaginatively reconstruct that experience. I think the sharing and the listening (or reading) makes for a profound ethical moment, so if you're reading, thanks!
One of the strangest things about fibromyalgia is that the pain is unlike any other kind of pain one would "normally" experience. If you don't know you have FMS, it's terrifying and alienating. As I said before, I think I've had this for a long time, possibly my whole life, and I remember feeling weird and ashamed that over the counter pain meds, or even prescription strength NSAIDS, would do nothing for me. I remember telling my podiatrist last year, after she diagnosed me with an orthopedic foot problem and made me wear these special custom insoles, that the insoles hurt 100 times worse than bare feet. She told me that I was "wrong" (about my own pain!) and that I had to keep wearing the shoes (turns out she was wrong! haha). I remember having full MRI scans of both my feet, which showed that they were normal, and freaking out that I couldn't walk half a block without being in excruciating pain. and didn't know why If you don't know what's going on, or even if you do, the pain can make you feel crazy.
But a lot of FMS sufferers, it seems, go through this process before they get diagnosed, because the logic of the pain is so much different from any other pain, be it from an illness, injury, arthritis, soreness from working out, etc. It feels like it has a mind of its own. I'm starting to think of it as a demon. It's a demon because it's a burning pain. Have you ever spent too long with a hot water pack, or put your hand on a car steering wheel on a hot day, and you feel this minor, but pervasive sensation on your skin that's somewhere between tolerably hot and burning? Now imagine that feeling but under your skin, and imagine that it you can feel it move through your body. Imagine that at times, your whole body feels like that. Or: hold your arms at a 45 degree angle, like you're making a "Y" in the "YMCA" dance, if you hold it there for a long time, you'll feel a searing pain in your shoulders Now imagine if your shoulders, or any other parts of your body, just felt like that, out of nowhere.
It's a demon because it stabs. Imagine that at all points of the day, somewhere in your body, you have at least one really sharp pain. Like, in your big toe, or your armpit, or your knees. Just an episode of sharp, sudden, throbbing pain. Like a side cramp, but it could be anywhere, and it's not caused by anything. To me, it feels like there's a little demon inside me, bouncing around, angry about something or other all the time, and taking it out on my body. As a demon, it doesn't respond to any earthly remedy (like ibuprofin), and it takes many forms (most of them "burning" or "stabbing"), and really feels like it has a mind of its own.
I, like other FMS sufferers, think the pain is far worse than a more "normal" kind of pain (though maybe not a gunshot wound, or childbirth, or a torn ACL). However, I don't think the intensity is that bad, but rather that the weirdness of it makes it feel like you are being attacked from the inside. It feels like somebody is doing something to you on purpose at all times, and you don't know who they are and you don't know why and you don't know what they're going to do next. So that's why I picture a demon.
What's the best way to conquer a pain that's demonic? So far the best things I've found are acupuncture and yoga. Western medicine doesn't know how to wrap its brain around the idea of pain that moves and is not inflammatory, but acupuncture gets it, it all has to do with the flow of qi. Yoga is good because I get to be hard on my body before the pain demon does; I envision the really intense stretches and challenging poses as forcing the demon into submission. The next day, if all goes well, all I will feel is the muscle soreness from exercise, and it's fantastic. Much less fibro pain, my body is at peace with itself. But it never really goes away, and that's something i don't know how to deal with yet...
To end on a positive note, here are some things that have made me happy this week: my amazing supportive parents, 7th Street Yoga, mamaki tea, Gabriel Marcel, and Acupuncture for the People (www.acupunctureforthepeople.org). Thanks to all who are reading my crazy rant about pain-demons. Next post will be less ridiculous, hopefully.
Hi. I know you haven't updated this blog in almost 3 years. You may not even get any notification that I've left a comment. So I'm technically doing this for myself, although if you read it, I'm doing it for you, too.
ReplyDeleteI was diagnosed with FMS about a month ago. It's been a very intense month. One of the ways I learn how to deal with new (and/or overwhelming) stressors is to smother it with knowledge; I set out to learn everything I can about it.
So. I start searching the internet and stumble on this blog. As I'm sure you know, it's nice to hear other people talk about what they're going through so you know you're not alone and not crazy.
One comment: you mention that FMS is worse than "normal" pain, although maybe not worse than childbirth. As a woman who has had two kids, I can tell you FMS is a LOT worse. Labor pain is awful, but it is 30-45 seconds of really intense pain, followed by a few minutes of little to no pain. It's regular and predictable and the same TYPE of pain every time (although it may vary a little in intensity). Plus, there's the mental component in childbirth of knowing that 1) you will NOT be in this pain forever, or even for more than a couple of days; 2) that the pain is *purposeful* -- it is the natural process the body goes through to produce the end result of a BABY! so there's a present at the end of the pain; and 3) everyone is crowding around you asking do you want more pain meds? Are you sure your pain is under control? Are you SURE you wouldn't like more pain meds? Everyone knows labor is a serious, intense pain, and no one tries to withhold pain medication.
That's been one of my biggest frustrations: I'm tired of a doctor looking at me like I'm a drug-seeking junkie. Yes, I'm dependent on narcotic pain meds--like a diabetic is dependent on insulin or a paraplegic is dependent on her wheelchair. I get no "kick" from the narcotics. That's not why I'm asking for them. I'm a high school teacher, for God's sake; if I wanted to obtain drugs, prescription or illegal, I know I could get them. I just want to not be in pain. Or, more realistically, I would like for my pain level to be in the 2-3 range rather than the 6-7 range.
Anyway. Hope you're feeling better and finding a way to control the pain demon!
Best,
Ilse