Some days I think the only thing keeping me from selling my soul for half an hour of physical comfort- rested, warm, free of pain- is that the devil isn't interested in buying. I start to wish I could remember what it's like to not be in pain, and I get to feeling sorry for myself, and tell myself stories about how brave and determined I am just because I make an effort to stay alive.
Days like this, I don't get a lot of writing, or thinking, done. Obviously. But I have been reading books by Terry Pratchett (Hogfather most recently) and its possible that someday I may be out of this funk.
Yesterday I got a postcard from Elizabeth, which brightened my day. I also had an appointment with VA Voc Rehab in Seattle to see if they'll agree that being able to work ten hours a week as a tutor or something is a goal worth paying my college tuition to achieve, and they didn't say no outright. Which is sort of good, although it means I have to go in for another appointment next week after gathering information on certifications and employment prospects, which, quite frankly, sounds exhausting enough that I almost want to cry. Driving into Seattle for any reason is a horrible horrible task. But hey, its still a good thing, and maybe I'll take the bus.
I just wish I wasn't so tired.
Showing posts with label fibromyalgia. Show all posts
Showing posts with label fibromyalgia. Show all posts
Thursday, October 23, 2008
Sunday, September 28, 2008
Like a vagabond with a fishing pole
Last week was the first week of class, and I'm wiped out. I'm taking one (1) class, a freshman geology course that has me in class a grand total of 7 hours a week and is an easy A, and I'm completely wiped out. I feel like I have the flu.
Its almost hard to believe that I'm seriously considering several years of this. Who voluntarily puts themselves through this much pain? I must be crazy.
My teacher is also crazy, and one of the worst things about the class is that she stands in the front spouting insane, impossible shit and I can't rebut and save the minds of the rest of the class from debilitating ignorance.
I know I have a tendency to exaggerate drama, but I'm really not kidding here. An example:
She is convinced that global warming isn't caused by human influence. Now, a lot of people believe this because they have a vested interest in doing whatever the fuck they want to the environment and their beliefs follow their interests, and she used to work for an oil company, so maybe that's all there is to it. However, the alternate explanation for global warming is so off the wall that her acceptance of it makes me wonder why she's a science teacher.
The cause of global warming, she says, is solar wind. Not directly, though- nothing as simple as solar winds heating the atmosphere and causing climate change. No, you see, solar winds have been less strong in the last 30-50 years than they were before that, which is a problem because solar winds exert pressure on the Earth's atmosphere, so when the solar winds are less strong, less pressure on the Earth's atmosphere means the atmosphere expands. When the atmosphere expands, the lowered air pressure allows the tectonic plates (and I guess the whole Earth) to expand, widening the space between plates and allowing magma to push up from the core into the plate boundaries under the oceans at the poles, causing an increase in undersea volcanoes which heat up the ocean water. The heated ocean water causes the sea ice to melt and affects the weather.
At least its a novel and exciting theory, right? Even if it does rely on a complete misunderstanding of gravity.
I guess in one sense, its encouraging that someone like this can get a job as a science teacher. It means I have a chance of finding employment, which is a thought that is at least partially appealing. I really hate doing things that make me feel this ill, but I also hate living in the room behind my parents' house. Enduring pain and fatigue and idiocy like this are all part of the plan to get me a crappy studio apartment of my very own.
My dedication to this plan gets more and more tenuous the more I think about it, so I've been not thinking about it. I've been knitting, and I read Kit Whitfield's Benighted yesterday, it's really quite good. I also started up a short story set in the Left Behind universe. Slacktivist finished LB Fridays, or at least finished the analysis of the first book, and I figure if there's any time to write a foefic for Right Behind, now is it. Although the story is looking a bit long and not showing any signs of ending, so it might be too long to post on Right Behind. We'll see.
Its almost hard to believe that I'm seriously considering several years of this. Who voluntarily puts themselves through this much pain? I must be crazy.
My teacher is also crazy, and one of the worst things about the class is that she stands in the front spouting insane, impossible shit and I can't rebut and save the minds of the rest of the class from debilitating ignorance.
I know I have a tendency to exaggerate drama, but I'm really not kidding here. An example:
She is convinced that global warming isn't caused by human influence. Now, a lot of people believe this because they have a vested interest in doing whatever the fuck they want to the environment and their beliefs follow their interests, and she used to work for an oil company, so maybe that's all there is to it. However, the alternate explanation for global warming is so off the wall that her acceptance of it makes me wonder why she's a science teacher.
The cause of global warming, she says, is solar wind. Not directly, though- nothing as simple as solar winds heating the atmosphere and causing climate change. No, you see, solar winds have been less strong in the last 30-50 years than they were before that, which is a problem because solar winds exert pressure on the Earth's atmosphere, so when the solar winds are less strong, less pressure on the Earth's atmosphere means the atmosphere expands. When the atmosphere expands, the lowered air pressure allows the tectonic plates (and I guess the whole Earth) to expand, widening the space between plates and allowing magma to push up from the core into the plate boundaries under the oceans at the poles, causing an increase in undersea volcanoes which heat up the ocean water. The heated ocean water causes the sea ice to melt and affects the weather.
At least its a novel and exciting theory, right? Even if it does rely on a complete misunderstanding of gravity.
I guess in one sense, its encouraging that someone like this can get a job as a science teacher. It means I have a chance of finding employment, which is a thought that is at least partially appealing. I really hate doing things that make me feel this ill, but I also hate living in the room behind my parents' house. Enduring pain and fatigue and idiocy like this are all part of the plan to get me a crappy studio apartment of my very own.
My dedication to this plan gets more and more tenuous the more I think about it, so I've been not thinking about it. I've been knitting, and I read Kit Whitfield's Benighted yesterday, it's really quite good. I also started up a short story set in the Left Behind universe. Slacktivist finished LB Fridays, or at least finished the analysis of the first book, and I figure if there's any time to write a foefic for Right Behind, now is it. Although the story is looking a bit long and not showing any signs of ending, so it might be too long to post on Right Behind. We'll see.
Wednesday, April 23, 2008
I wish it was the sixties
Its one of those days where everything seems wrong, and since I can't do a thing about the real problems I have, I try to concentrate on the small, ordinary tasks in front of me. I find that the best therapy for helplessness is to reach out and touch something real: plants in the garden or dirty dishes or yarn on a needle. Physical objects are both more solid and more malleable than fears about the future, more solid than pain or fatigue or worries about money.
Whenever a doctor reads my medical records and sees that I've been diagnosed with depression, they try to refer me to counseling, and I have a hard time explaining why I have no desire to go. Talking about things does make you feel better, but it can only help so much when your problems are genuinely unchangeable. No one can take away the pain I feel, and no one can make the VA give me the benefits to which I'm entitled; talking about things won't change that a bit, but talking is all the help that doctors ever offer.
Completing tasks that decrease the amount of entropy in my immediate environment is my primary method of coping. What I mean is, I plant seeds and knit sweaters because changing some small thing so that its different than it was before is a way of affirming my connection to the world, to life, to happiness. I put my world in order to prove that some things are improvable. I hate to assume that anyone is reading this, but if you see this and have a particular coping mechanism that you've more or less invented on your own, it would be neat to hear about it.
I completed the finishing on two sweaters in the past couple of days, and filled the tires of my bicycle this morning. I'm going to teach myself a new knitting pattern here in a bit, and things are growing in my garden. For now, the sun is shining, and I took some pictures.
Whenever a doctor reads my medical records and sees that I've been diagnosed with depression, they try to refer me to counseling, and I have a hard time explaining why I have no desire to go. Talking about things does make you feel better, but it can only help so much when your problems are genuinely unchangeable. No one can take away the pain I feel, and no one can make the VA give me the benefits to which I'm entitled; talking about things won't change that a bit, but talking is all the help that doctors ever offer.
Completing tasks that decrease the amount of entropy in my immediate environment is my primary method of coping. What I mean is, I plant seeds and knit sweaters because changing some small thing so that its different than it was before is a way of affirming my connection to the world, to life, to happiness. I put my world in order to prove that some things are improvable. I hate to assume that anyone is reading this, but if you see this and have a particular coping mechanism that you've more or less invented on your own, it would be neat to hear about it.
I completed the finishing on two sweaters in the past couple of days, and filled the tires of my bicycle this morning. I'm going to teach myself a new knitting pattern here in a bit, and things are growing in my garden. For now, the sun is shining, and I took some pictures.
Friday, February 15, 2008
the sticky-sweet taste of vomit clinging to my teeth
I stopped taking fluoxetine today. Today was only the fourth day since I started taking it; this is certainly not a record for me, but still I worry that I'm not giving the medication a fair chance. Maybe I'm really not.
It's gotten so that I expect that any new medication will make me ill right off. My memory for pain and illness is hazy but somehow the fear doesn't diminish with the sharpness of the memory, so although I no longer remember exactly what it felt like the time trazodone made me ill, or the time Effexor made me ill, I do remember laying in bed wondering if I ought to call 9-1-1, wondering if I was dying. I remember the vomiting, and the wanting to vomit, the dozing for a day and half broken by bouts of pain, the tremors and the rapid heartbeat, the feeling of being about to faint, the feeling of things being very not right.
I remember that no doctor has ever even tried to explain why this happens to me.
Some of this I remember more clearly because it happened again this morning. The nausea, the lightheadedness and tremors, the spacey fatigue. My stomach clenches remembering it.
The worst part of it all, though, is the fear. I got lucky this time. The sickness passed in only a few minutes; by anyone's standards it was almost nothing at all. But when it hit me, I didn't know that was how it was going to happen, and the fear was almost overwhelming. It scares me deep down, this sensation that my body is going wrong. I look into this pit of unknown sickness and I see death, or rather, since nothing is clear but the conviction of danger, I smell death. The scent of it sticks to me and although I don't really believe that taking one more 10mg dose of fluoxetine will kill me still the fear has a solid hold of me and I just can't make myself take it.
I honestly don't know if I'm being prudent and reasonable and coping well, or if I'm just a coward. Fear makes it easy to justify a decision and I suspect that the wise thing to do is to continue taking these pills until they either make me seriously ill for days or my body gets used to them. There's just something about making a clear choice to do something that you believe will harm you (and won't benefit anyone) that is incredibly difficult. It's what kept me from starting this medication for so long, and maybe now it's keeping me from giving it a fair chance to work. I wish I knew, but I can't tell.
It's gotten so that I expect that any new medication will make me ill right off. My memory for pain and illness is hazy but somehow the fear doesn't diminish with the sharpness of the memory, so although I no longer remember exactly what it felt like the time trazodone made me ill, or the time Effexor made me ill, I do remember laying in bed wondering if I ought to call 9-1-1, wondering if I was dying. I remember the vomiting, and the wanting to vomit, the dozing for a day and half broken by bouts of pain, the tremors and the rapid heartbeat, the feeling of being about to faint, the feeling of things being very not right.
I remember that no doctor has ever even tried to explain why this happens to me.
Some of this I remember more clearly because it happened again this morning. The nausea, the lightheadedness and tremors, the spacey fatigue. My stomach clenches remembering it.
The worst part of it all, though, is the fear. I got lucky this time. The sickness passed in only a few minutes; by anyone's standards it was almost nothing at all. But when it hit me, I didn't know that was how it was going to happen, and the fear was almost overwhelming. It scares me deep down, this sensation that my body is going wrong. I look into this pit of unknown sickness and I see death, or rather, since nothing is clear but the conviction of danger, I smell death. The scent of it sticks to me and although I don't really believe that taking one more 10mg dose of fluoxetine will kill me still the fear has a solid hold of me and I just can't make myself take it.
I honestly don't know if I'm being prudent and reasonable and coping well, or if I'm just a coward. Fear makes it easy to justify a decision and I suspect that the wise thing to do is to continue taking these pills until they either make me seriously ill for days or my body gets used to them. There's just something about making a clear choice to do something that you believe will harm you (and won't benefit anyone) that is incredibly difficult. It's what kept me from starting this medication for so long, and maybe now it's keeping me from giving it a fair chance to work. I wish I knew, but I can't tell.
Saturday, February 09, 2008
In my dreams I've found this place
About a week and a half ago I went to the emergency room with blinding abdominal pain accompanied by frequent vomiting and that intense feeling you get of things being not right. Turns out I had kidney stones and an infection to go with them. At the ER, I got a prescription for Vicodin, among other things, to deal with the pain, but I didn't get it filled right after being discharged because I've tried Vicodin before for my fibromyalgia pain and it does nothing whatsoever to alleviate the pain, but it does make me vomit, and I was doing enough of that already.
After I was discharged from the ER, though, the pain got bad again quickly and I eventually sent my husband to the pharmacy to pick up my Vicodin prescription. I took it, and it dramatically reduced the amount of pain I was feeling from the kidney stones. However, at the same time I was in pain from my fibromyalgia because I'd been laying down for over twenty-four hours at that point, with breaks only to go to the bathroom or vomit. My shoulders and back were compressed from being immobile and the pain grew to the point where it was about 3/4s as bad as the kidney stone pain was without any medication at all. Once I took the Vicodin, the kidney stone pain was reduced by 85% or more, but the fibromyalgia pain was not affected at all, just like usual. I only had one episode of vomiting that I think was due to the medications, too; despite the lack of relief of my fibromyalgia pain, I was pretty pleased with this outcome.
I assume doctors are aware of this difference in medication efficacy between pains; thinking on it, they must be, or why would they develop drugs like Lyrica specifically for nerve pain? I haven't heard a doctor articulate this difference before, though, and you'd think that, as a patient with a chronic pain condition, I would have a fair chance of hearing it if they were in the habit of talking about it. It makes me curious, though, if whether in my lifetime I will see the development of pain treatments that acknowledge all the different kinds of pain. I have this theory that the way our bodies sense pain is much more complicated than medical science currently acknowledges. My experience with kidney stones suggests that if you view opiates like Vicodin as acting primarily to block pain receptors in the brain so that pain signals don't get through (which I believe is more or less accurate), there has to be more than one set of pain receptors, or more than one way in which those receptors accept information, and perhaps whole different systems built for sensing different kinds of pain.
In Pain: the Science of Suffering, by Patrick Wall, Dr. Wall describes the traditional medical model for pain as something like a contraption where at one end you knock a ball with a hammer to start it rolling on its path and then at the other end once the ball gets there it rings a bell: injury equals nervous system reaction equals pain. This traditional model is clearly sadly lacking, and often cruelly misleading, and I'm interested to see what medical science is going to discover to put in it's place.
After I was discharged from the ER, though, the pain got bad again quickly and I eventually sent my husband to the pharmacy to pick up my Vicodin prescription. I took it, and it dramatically reduced the amount of pain I was feeling from the kidney stones. However, at the same time I was in pain from my fibromyalgia because I'd been laying down for over twenty-four hours at that point, with breaks only to go to the bathroom or vomit. My shoulders and back were compressed from being immobile and the pain grew to the point where it was about 3/4s as bad as the kidney stone pain was without any medication at all. Once I took the Vicodin, the kidney stone pain was reduced by 85% or more, but the fibromyalgia pain was not affected at all, just like usual. I only had one episode of vomiting that I think was due to the medications, too; despite the lack of relief of my fibromyalgia pain, I was pretty pleased with this outcome.
I assume doctors are aware of this difference in medication efficacy between pains; thinking on it, they must be, or why would they develop drugs like Lyrica specifically for nerve pain? I haven't heard a doctor articulate this difference before, though, and you'd think that, as a patient with a chronic pain condition, I would have a fair chance of hearing it if they were in the habit of talking about it. It makes me curious, though, if whether in my lifetime I will see the development of pain treatments that acknowledge all the different kinds of pain. I have this theory that the way our bodies sense pain is much more complicated than medical science currently acknowledges. My experience with kidney stones suggests that if you view opiates like Vicodin as acting primarily to block pain receptors in the brain so that pain signals don't get through (which I believe is more or less accurate), there has to be more than one set of pain receptors, or more than one way in which those receptors accept information, and perhaps whole different systems built for sensing different kinds of pain.
In Pain: the Science of Suffering, by Patrick Wall, Dr. Wall describes the traditional medical model for pain as something like a contraption where at one end you knock a ball with a hammer to start it rolling on its path and then at the other end once the ball gets there it rings a bell: injury equals nervous system reaction equals pain. This traditional model is clearly sadly lacking, and often cruelly misleading, and I'm interested to see what medical science is going to discover to put in it's place.
Friday, December 28, 2007
you can't see the thin air
I had a medical appointment today. I was under the impression that it was supposed to be a referral for Cognitive Behavioral Therapy, so I went in all ready to explain that techniques for correcting irrational beliefs in order to improve one's outlook on life are all well and good, but if my beliefs are rational CBT isn't going to be helpful. I firmly believe that my expectation that my health is not going to significantly improve in the future is realistic, and furthermore, that accepting this hard truth is more helpful and healthy than continuing to deny it in the hope that positive thinking will magically cure me.
Turns out this referral wasn't actually for CBT, it was for drugs. The doctor I saw wasn't at all interested in hearing about my memory, concentration, or comprehension problems, and she wasn't at all interested in my history of extremely bad reactions to ridiculously low doses of various medications. What she was interested in was writing me a prescription for Prozac.
I'm not excited about the prospect of taking Prozac, although I agreed to it, of course; I don't ever feel comfortable not agreeing to a suggested course of treatment, because I'm very afraid that if I am ever the least bit non-compliant, for ever after every doctor will point to it and say "Well, it's too bad you didn't agree to this treatment, or you'd be well now. It's your fault you're ill." I'm not sure how rational this fear is, although it has some basis in how I was treated in the Army. Anyway, taking Prozac isn't that big a deal. I am fairly certain it will make me ill just like Effexor did, and I will vomit for a few days, lay about in bed feeling like I'm dying and then I'll recover and not take it anymore. I just wish that I could hurry up and get past the phase of treatment where doctors insist that making me more ill is the best way to treat me.
When going through my medical history with this most recent doctor, we discussed previous medications' lack of benefit on the pain relieving front. She was concerned that I may not be taking medication with the right attitude; her worry is that my cynicism is actually preventing the medication from working like it's supposed to, causing medications that would otherwise relieve my pain to do nothing.
This philosophy that attributes supernatural powers to my emotions is, I think, the worst thing about going to the doctor. I'm not a religious person, nor am I superstitious. I let go of my childhood faith when I could no longer convince myself to pretend to believe in a gigantic Santa in the sky causing good things to happen to good people and bad things to happen to the bad; I couldn't even believe in fate. Things happen because they are caused to happen by real things that exist in the real world, not because you wish they would happen, or pray for them to happen, or believe that they will happen, or deserve for them to happen. This is true of disasters and good fortune alike, and it's true whether I like it or not. It's also true whether you like it or not, which is why mostly I don't give a crap what other people believe about the world. I recognize that there is a human inclination to assign causation to things, and as this seems to be a fairly universal trait (that even I haven't missed out on) I might as well accept it.
It does get to be a problem, though, when it interferes with my health care. I wish I knew how to change things.
Turns out this referral wasn't actually for CBT, it was for drugs. The doctor I saw wasn't at all interested in hearing about my memory, concentration, or comprehension problems, and she wasn't at all interested in my history of extremely bad reactions to ridiculously low doses of various medications. What she was interested in was writing me a prescription for Prozac.
I'm not excited about the prospect of taking Prozac, although I agreed to it, of course; I don't ever feel comfortable not agreeing to a suggested course of treatment, because I'm very afraid that if I am ever the least bit non-compliant, for ever after every doctor will point to it and say "Well, it's too bad you didn't agree to this treatment, or you'd be well now. It's your fault you're ill." I'm not sure how rational this fear is, although it has some basis in how I was treated in the Army. Anyway, taking Prozac isn't that big a deal. I am fairly certain it will make me ill just like Effexor did, and I will vomit for a few days, lay about in bed feeling like I'm dying and then I'll recover and not take it anymore. I just wish that I could hurry up and get past the phase of treatment where doctors insist that making me more ill is the best way to treat me.
When going through my medical history with this most recent doctor, we discussed previous medications' lack of benefit on the pain relieving front. She was concerned that I may not be taking medication with the right attitude; her worry is that my cynicism is actually preventing the medication from working like it's supposed to, causing medications that would otherwise relieve my pain to do nothing.
This philosophy that attributes supernatural powers to my emotions is, I think, the worst thing about going to the doctor. I'm not a religious person, nor am I superstitious. I let go of my childhood faith when I could no longer convince myself to pretend to believe in a gigantic Santa in the sky causing good things to happen to good people and bad things to happen to the bad; I couldn't even believe in fate. Things happen because they are caused to happen by real things that exist in the real world, not because you wish they would happen, or pray for them to happen, or believe that they will happen, or deserve for them to happen. This is true of disasters and good fortune alike, and it's true whether I like it or not. It's also true whether you like it or not, which is why mostly I don't give a crap what other people believe about the world. I recognize that there is a human inclination to assign causation to things, and as this seems to be a fairly universal trait (that even I haven't missed out on) I might as well accept it.
It does get to be a problem, though, when it interferes with my health care. I wish I knew how to change things.
Tuesday, December 25, 2007
Whenever someone asks me how I am, I am reluctant to lie and say that I am doing well, but I am also reluctant to lay bare the truth; I am afraid if I mention constantly how much pain I am in, people will see me as nothing but a whining hypochondriac. So in order to keep people asking me how I am, I don't tell them how I am. Instead, I tell them that I'm cold. It communicates that I am clearly miserable, and yet it's not so negative that no one wants to hear about it. In fact, in the current situation it's interpreted as a reaction to my first winter in the Midwest, and so people are eager to tell me all about how cold its been and how to stay warm and about their thyroid problem that made them always cold.
However, for Christmas this year, I got: a sweater, a down coat, slippers, a hat-glove-scarf set, long underwear, and the most fabulous electric blanket.
I'm going to need a new strategy.
However, for Christmas this year, I got: a sweater, a down coat, slippers, a hat-glove-scarf set, long underwear, and the most fabulous electric blanket.
I'm going to need a new strategy.
Friday, October 26, 2007
Illness as Metaphor
I read Illness as Metaphor yesterday and today, and I would like to write about it. The most appropriate way of writing what I'm thinking may be a contrast study with The Bridge of San Luis Rey, but I don't know if I'll have the mental energy to do that. I have other things I need to write in the next week or so. However, for a start, here are some quotes from the book that I thought to be rather edifying.
For all that Sontag's writing style is atrocious- she makes me want to tie her to a desk and force her to write outlines until she can complete an argument in a linear fashion- she does have some things to say in this piece that are very apt. I am tempted to write up a little bit about the psychological model of illness to take with me to my next appointment with the Psychologist From Hell.
"According to the mythology of cancer, it is generally a steady repression of feeling that causes the disease... the passion that people think will give them cancer if they don't discharge it is rage. There are... cancerphobes like Norman Mailer, who recently explained that had he not stabbed his wife (and acted out "a murderous nest of feeling") he would have gotten cancer and "been dead in a few years himself.""
"So well established was the cliche which connected TB and creativity that at the end of the century one critic suggested that it was the progressive disappearance of TB which accounted for the current decline of literature and the arts."
"Doctors and laity believed in a TB character type- as now the belief in a cancer-prone character type, far from being confined to the back yard of folk superstition, passes for the most advanced medical thinking."
She quotes Katherine Mansfield, who died of tuberculosis: "A bad day... horrible pains and so on, and weakness. I could do nothing. The weakness was not only physical. I must heal my Self before I will be well... This must be done alone and at once. It is at the root of my not getting better. My mind is not controlled."
"In his Morbidus Anglicus (1672), Gideon Harvey declared "melancholy" and "choler" to be "the sole cause" of TB... In 1881, a year before Robert Koch published his paper announcing the discovery of the tubercle bacillus and demonstrating that it was the primary cause of the disease, a standard medical textbook gave as the causes of tuberculosis: hereditary disposition, unfavorable climate, sedentary indoor life, defective ventilation, deficiency of light, and "depressing emotions.""
"The second [hypothesis] is that every illness can be considered psychologically. Illness is interpreted as, basically, a psychological event, and people are encouraged to believe that they get sick because they (unconsciously) want to, and that they can cure themselves by the mobilization of will; that they can choose not to die of the disease. ... Psychological theories of illness are a powerful means of placing the blame on the ill. Patients who are instructed that they have, unwittingly, caused their disease are also being made to feel that they have deserved it."
"The notion that a disease can be explained only by a variety of causes is precisely characteristic of thinking about diseases whose causation is not understood. And it is diseases thought to be multi-determined (that is, mysterious) that have the widest possibilities as metaphors for what is felt to be socially or morally wrong."
For all that Sontag's writing style is atrocious- she makes me want to tie her to a desk and force her to write outlines until she can complete an argument in a linear fashion- she does have some things to say in this piece that are very apt. I am tempted to write up a little bit about the psychological model of illness to take with me to my next appointment with the Psychologist From Hell.
Thursday, July 19, 2007
some thoughts on relating to pain
So I'm preparing to get in with a new doctor in the VA system here, since I moved across the country. I've been putting it off; it should have been one of my first priorities once we arrived, since I have a disability claim pending that needs a mental health evaluation done, and it's my responsibility to set that up since I canceled the one they set up for me in Oregon. They scheduled it for three weeks after I was supposed to move here, but still. But I've been putting it off, because of the enormous amounts of paperwork, and waiting around, and unnecessary doctor's visits, and driving into an unfamiliar downtown area to meet new doctors who don't believe there's anything wrong with me, that's involved in getting into a new medical system. I really really hate going to the doctor.
Not that VA medical care has been anything but quality. Really, all the doctors I've seen have been good doctors. Its just that my medical reality is so far removed from what normal people go through. Most of the time that doesn't bother me, because I don't live as someone else, I just live as me, so it doesn't really matter what other people go through. But going to the doctor means trying to describe what my life is like, and that brings certain things into focus.
The VA has a standard procedure for checking people in before a doctor's appointment. You're seen by a medical assistant who takes you through a list of questions, mostly pretty standard things, like, do you smoke? do you drink? when was your last menstrual period? are you pregnant/trying to get pregnant? what health issue are you here for? And they take your blood pressure and temperature and so on. One thing that they always ask you is to rate your pain on a scale of 1-10, and I can see how this is supposed to be helpful to them. I mean, clearly you can't tell how someone is doing just by looking at them, and they're trying to set a standardized scale for pain just like for anything else, so that they can deal with it consistently.
The obvious problem is that not everyone has the same reference points for pain. They tell you that 10 is supposed to be the worst pain that you're ever felt, but what if you've never felt severe pain? Not everyone has broken bones, or been burned, or gone through childbirth. So the scale is fundamentally flawed, and they acknowledge that, but want you to answer anyway. I tend to answer based on how my pain is affecting my functionality; my '5' is the tipping point of function, anything less and I'm in pain but coping, anything more and I really need to go lie down. This usually satisfies them, and I think that most of the time it conveys what I'm feeling pretty well.
The thing is, though, that my relationship with pain is so very different from someone who has pain only occasionally, that the whole concept of a scale fails to convey the things about my pain that are most important. I mentioned this to my therapist on one of my last visits to see her, and she immediately assumed that I meant that I just got used to being in pain, that I could deal better with higher levels of pain than other people because I was used to it.
This is true to a certain extent. There are a lot of little aches and pains that I ignore basically because I'm bored of paying attention to them. For example, sitting here at my computer typing, I don't register the aches in my finger bones, the nerve pain in my left shoulder, the twinge in my back, the stabbing at the base of my skull, unless I think about it on purpose- or I move in some way that highlights the pain. When I stand up to walk around the room, my feet burst into pain but it's not an event that I remember once I sit back down. I think that if you felt exactly the way I do now, after not feeling this way your whole life, you would notice. You would think, 'oh, I'm sick', or 'I must have hurt myself without realizing it'. You would call your doctor so you could see if you had arthritis in your hands, or a bulging disk in your back, or migraine headaches. But when you know that your pain is meaningless, that it doesn't herald some damage to your body, you get used to it. It becomes familiar, a non-event.
On the other hand, when pain is your constant companion, it is necessary to control it whenever possible for the sake of your sanity. Some lucky sufferers are able to do this with chemicals, but I am not. My only tool for controlling pain is my behavior. If the way I sit hurts my back, I change chairs, or stand up, or lay down. If the clothes I wear irritate my skin, I change them. If typing hurts my fingers, I stop. If standing hurts my hips and feet and knees, I find some place to sit down. This means I have to pay attention to what my body can tolerate, and react as soon as I can to pains that seem like they might grow. If you're walking down the street, and you stub your toe, it will probably hurt a lot, and you'll jump around holding your foot and make faces and curse. But then the pain will subside and you'll keep walking, and five hours later you won't even remember that you stubbed your toe at all.
If I walk down the street, with every step I take my pain increases just a little bit. By the time it gets to hurt even half as much as your stubbed toe did, I know I better quit, because if I don't it will have consequences for the rest of the day. My pain doesn't go away. I have to pay attention to it, manage it, even when it doesn't hurt as bad as its possible to hurt, because if I don't it will make me pay attention to it. Because pain is capable of making you a slave, drooling and whimpering, incapable of rational thought or memory.
Not that VA medical care has been anything but quality. Really, all the doctors I've seen have been good doctors. Its just that my medical reality is so far removed from what normal people go through. Most of the time that doesn't bother me, because I don't live as someone else, I just live as me, so it doesn't really matter what other people go through. But going to the doctor means trying to describe what my life is like, and that brings certain things into focus.
The VA has a standard procedure for checking people in before a doctor's appointment. You're seen by a medical assistant who takes you through a list of questions, mostly pretty standard things, like, do you smoke? do you drink? when was your last menstrual period? are you pregnant/trying to get pregnant? what health issue are you here for? And they take your blood pressure and temperature and so on. One thing that they always ask you is to rate your pain on a scale of 1-10, and I can see how this is supposed to be helpful to them. I mean, clearly you can't tell how someone is doing just by looking at them, and they're trying to set a standardized scale for pain just like for anything else, so that they can deal with it consistently.
The obvious problem is that not everyone has the same reference points for pain. They tell you that 10 is supposed to be the worst pain that you're ever felt, but what if you've never felt severe pain? Not everyone has broken bones, or been burned, or gone through childbirth. So the scale is fundamentally flawed, and they acknowledge that, but want you to answer anyway. I tend to answer based on how my pain is affecting my functionality; my '5' is the tipping point of function, anything less and I'm in pain but coping, anything more and I really need to go lie down. This usually satisfies them, and I think that most of the time it conveys what I'm feeling pretty well.
The thing is, though, that my relationship with pain is so very different from someone who has pain only occasionally, that the whole concept of a scale fails to convey the things about my pain that are most important. I mentioned this to my therapist on one of my last visits to see her, and she immediately assumed that I meant that I just got used to being in pain, that I could deal better with higher levels of pain than other people because I was used to it.
This is true to a certain extent. There are a lot of little aches and pains that I ignore basically because I'm bored of paying attention to them. For example, sitting here at my computer typing, I don't register the aches in my finger bones, the nerve pain in my left shoulder, the twinge in my back, the stabbing at the base of my skull, unless I think about it on purpose- or I move in some way that highlights the pain. When I stand up to walk around the room, my feet burst into pain but it's not an event that I remember once I sit back down. I think that if you felt exactly the way I do now, after not feeling this way your whole life, you would notice. You would think, 'oh, I'm sick', or 'I must have hurt myself without realizing it'. You would call your doctor so you could see if you had arthritis in your hands, or a bulging disk in your back, or migraine headaches. But when you know that your pain is meaningless, that it doesn't herald some damage to your body, you get used to it. It becomes familiar, a non-event.
On the other hand, when pain is your constant companion, it is necessary to control it whenever possible for the sake of your sanity. Some lucky sufferers are able to do this with chemicals, but I am not. My only tool for controlling pain is my behavior. If the way I sit hurts my back, I change chairs, or stand up, or lay down. If the clothes I wear irritate my skin, I change them. If typing hurts my fingers, I stop. If standing hurts my hips and feet and knees, I find some place to sit down. This means I have to pay attention to what my body can tolerate, and react as soon as I can to pains that seem like they might grow. If you're walking down the street, and you stub your toe, it will probably hurt a lot, and you'll jump around holding your foot and make faces and curse. But then the pain will subside and you'll keep walking, and five hours later you won't even remember that you stubbed your toe at all.
If I walk down the street, with every step I take my pain increases just a little bit. By the time it gets to hurt even half as much as your stubbed toe did, I know I better quit, because if I don't it will have consequences for the rest of the day. My pain doesn't go away. I have to pay attention to it, manage it, even when it doesn't hurt as bad as its possible to hurt, because if I don't it will make me pay attention to it. Because pain is capable of making you a slave, drooling and whimpering, incapable of rational thought or memory.
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