On spoons, embodiment and physical pain
One of the things I've been learning about this summer is spoons. I'm not good with spoon theory yet--I seem to run out of spoons far more frequently than not.
Coming to terms with my lack of spoons this summer has happened primarily because I'm in the process of being formally diagnosed with Ehlers-Danlos syndrome. I say formally because it's a process that involves a number of expensive tests and trips to rheumatologists and geneticists and can take several years to actually diagnose, depending on how familiar your doctors are with the syndrome. Also it can mask itself as other syndromes which is always fun when dealing with the medical system.
Long story short, Ehlers-Danlos is genetic disorder involving the connective tissue: it boils down to an issue with the collagen in my body not forming correctly. A lot of times it gets misdiagnosed as fibromyalgia due to the pain issues that develop with EDS and the fact that Ehlers-Danlos is rare enough that most doctors see the fibro symptoms first, but sometimes people have fibro alongside EDS. There are a lot of symptoms associated with it, from joint dislocation to easy bruising to gait issues to hyper-mobility and stretchy, velvety skin to digestive disorders (because who knew your GI tract was heavy in collagen) to abnormal wound healing/scarring to constant fatigue to vascular issues, and I have a huge amount of them, which is a bit overwhelming. Although being heavily symptomatic also helps me to lay it out for my doctors in a way that they can't overlook. And finally having this weird set of things-wrong-with-Femme's-body I've had all my life being taken seriously, finally having someone say to me that no it's not normal to live with this amount of pain, Christ. It's liberating in a way.
Because I have lived with a huge amount of pain most of my life, and for most of my life, I've had medical professionals either tell me it's in my head or that it's not that bad. (Evidently the only way to have certain doctors believe you're in pain is to roll around on the floor screaming and stoic me doesn't do that.) I bought that for a while. I pushed through the pain. Just a few years ago, during the time I've been on LJ actually, I had four years where I had such intense pain in my feet that it felt like knives stabbing into my soles every time I took a step. I never went to the doctor because, well, they've never believed me before. Their typical response is "well, try losing a bit of weight and see if it goes away" to which I say fuck you, assholes, that is not the answer to every medical conundrum to which you cannot find answer. So I just grit my teeth and walked anyway because I had to.
Now I'm being told I don't have to do that. I have to admit that throws me for a loop.
One of the primary symptoms of Ehlers-Danlos is joint dislocation. When I was a toddler, my dad used to dislocate my shoulders just by picking me up the wrong way by my arms. Trust me when I say it upset him as much or more than it upset me. Since I was a pre-teen, my knee's twisted out of its socket pretty regularly and without notice, my kneecap ripping around to the back of my knee, leaving me on the sidewalk in blinding pain with just one wrong step. I can pop a finger out of joint just by pushing it the wrong way, I learned quickly that the lotus position and my hips are not good meditative combination, and the number of times I've been on crutches in my life for a sprained ankle just shouldn't even be numerated. Lately I've been popping out the joints in my knee, my shoulders, my hips, my spine, my feet, my hands and my ribs, just by standing wrong, lying down wrong, sitting wrong, lifting things the wrong way or even going down steps. (I can run up several flights of steps with no issues, but the moment I start going down them, my knees scream in pain and start to wobble. I'm learning that it's okay to take an elevator down; it doesn't make me lazy, no matter what other people may think.)
Part of this dislocation happens because my joints are hyper-mobile, or more colloquially, I have some double-jointedness. I can extend my knees slightly backward, bowing my leg into a slightly concave position. I can bend my fingers and toes in outrageous positions: I can bend some of my toes back to nearly touch the top of my feet and I can bend several of my fingers back past a ninety-degree angle. I can even bend my thumbs so that they lie against my forearms. When I was a kid, I used to put my feet behind my head; my favorite way of sitting as a child was to lie on my back on the floor and lift my legs up so my knees were on the floor next to my shoulders. (Yeah, that doesn't happen any more with my old body.) I always thought this hyper-mobility was just a cool trick; I assumed everyone could do it. Er. It seems I was wrong.
Over the past few years, I've had some mobility issues. (See the four years of foot pain previously mentioned--that was most likely caused by bones in my foot constantly sliding out of joint without me realizing it.) I'm not yet in need of mobility assistance, but I've had stretches of time where I've had to move slower because of pain or be careful of things like going down stairs the way I've had to be cognizant of them this summer. Right now I spend almost every day in pain of some sort; I wake up in pain because some joint--usually my shoulder or hip--has gone out during the night, or when I stand up after having been sitting at my desk at work for several hours, my hip gives out, or I move my leg the wrong way and my knee protests. For now a daily regimen of Advil as often as I can take it helps, as does walking as much as I can, ironically: as part of my commute I usually walk 2.5 miles on days that I go in to work; the days I don't, my pain ratio is higher. But even with that I have to be careful: carrying more than my MacBook Air in my backpack or taking the wrong sidewalk where tree roots cause the pavement to be angled can throw out the small of my back and put me in agony for the rest of the day. I'm not entirely certain how I'm going to manage school next semester. I think there's going to be a lot of digitizing of my reading material going on. Good thing I work in a library with a scanner that does searchable PDFs.
All this requires me to be really present in my body in a way I haven't been before. Having Ehlers-Danlos means I have to be aware of how much pain I'm having at any given moment--at this particular moment, typing this, I can feel the pain in my neck that's radiating out to my shoulder because sitting here on the couch typing on my computer makes me hold my body in a way that puts stress on those joints. I can feel the dull ache in my ankle that I've had all day, the subtle pain in my fingers and wrists from typing which will ease once I have a chance to pop their joints, and the throb of the arthritis that's started to develop in my lower hip according to my doctor. I have to know how many spoons I have throughout the day as well--I have less tonight because I had to give the sermon at my church this morning which has required a lot more effort and focus this weekend than I'd normally exert on a Saturday/Sunday. (Not to mention the emotional drain of preaching about racism to a group of affluent, white Episcopalians.)
It's weird for me to be so present in my body. I've spent most of the past 41 years of my life disassociating from my body, between the constant pain and the six years of childhood sexual abuse. I am most definitely not an embodied individual. I think that's why I love the Internet so much; here within these pixels I can be unembodied. It doesn't matter here that I have a body that doesn't work right; it doesn't matter that I have a body that I've spent most of my life vastly uncomfortable in to the point that I ignore it.
It's hard to ignore my body now. I've been in the process of coming to terms with it since I had cancer two years ago; I think that's why I've now been able to follow and push for this diagnosis. I've finally come to the place that I can listen to my body, that I can hear what it's telling me, that I can acknowledge when it hurts and when it's tired and when I've pushed it too far--without feeling overwhelming guilt for letting other people down or for letting down my overblown expectations of myself.
Now I'm coming to terms with the fact that as I age, my pain is going to keep growing. It's going to be an issue I have to address with the help of my doctors. And there's a likelihood that my mobility issues are going to grow. Rheumatoid arthritis is something I'll have to keep an eye out for. Concrete floors are hell on my body, even when carpeted. Being aware of how my body moves is not optional. Going down stairs is going to become seriously problematic at some point, and joint replacement is probably going to happen down the road. It is not uncommon for people with EDS to come to a point where they need to rely on a wheelchair when their pain/mobility issues become a little too much. Spoons are going to need to be assessed daily.
I'm tired a lot right now. Friday night I slept twelve hours, then took a two hour nap Saturday afternoon.This afternoon I slept three and a half hours. Spoons again. I won't feel guilty about that, even though my workaholic self tries to tell me those are wasted hours that I could have used more profitably. Fuck that shit. My body needed rest; I gave it rest.
I started labyrinth walking this summer as a spiritual practice; there's a labyrinth at school and one at a Unitarian church near me. It's been good for my head. Walking the labyrinth path allows me to embody prayer and meditation in a way that's helped me start to come to terms with how few spoons I have at the moment. I am without a doubt a natural workaholic. I like to call myself lazy because there's a (stupid) part of me that thinks I am, but I'm not. I feel at loose ends if I'm not doing something at all times, and it's been hard for me this summer to get to the point where I let my body rest, where I fight my natural tendencies to go-go-GO. But being in the labyrinth, being in that place where the coils of the labyrinth twist and turn on themselves as I wind my way to the center, causing me to reverse direction repeatedly, to look back on where I just was in the course of the spiral, there's something about that constant turning inward and outward that settles my brain and that helps me untangle those ridiculous judgements I make about my body's seeming failures.
Lauren Artress, the Episcopal priest who helped to resurrect the use of labyrinth prayer as a spiritual practice, writes in her book Walking a Sacred Path, that "when we allow ourselves to be whole, we allow new visions to emerge within us and within our cultures." That statement's stuck with me. Allow ourselves to be whole. I think that's what I'm working on right now, letting myself be whole, even though it seems like physically I'm not. Because maybe becoming whole means I have to accept that my body's not whole. It's a bit broken and battered, and that's okay. Because it's still me. And accepting that, well. Maybe that helps to make me whole.
------------------
This entry was originally posted at http://femmequixotic.dreamwidth.org/515012.html where there are currently
comments. You can comment here or there using OpenID.
Coming to terms with my lack of spoons this summer has happened primarily because I'm in the process of being formally diagnosed with Ehlers-Danlos syndrome. I say formally because it's a process that involves a number of expensive tests and trips to rheumatologists and geneticists and can take several years to actually diagnose, depending on how familiar your doctors are with the syndrome. Also it can mask itself as other syndromes which is always fun when dealing with the medical system.
Long story short, Ehlers-Danlos is genetic disorder involving the connective tissue: it boils down to an issue with the collagen in my body not forming correctly. A lot of times it gets misdiagnosed as fibromyalgia due to the pain issues that develop with EDS and the fact that Ehlers-Danlos is rare enough that most doctors see the fibro symptoms first, but sometimes people have fibro alongside EDS. There are a lot of symptoms associated with it, from joint dislocation to easy bruising to gait issues to hyper-mobility and stretchy, velvety skin to digestive disorders (because who knew your GI tract was heavy in collagen) to abnormal wound healing/scarring to constant fatigue to vascular issues, and I have a huge amount of them, which is a bit overwhelming. Although being heavily symptomatic also helps me to lay it out for my doctors in a way that they can't overlook. And finally having this weird set of things-wrong-with-Femme's-body I've had all my life being taken seriously, finally having someone say to me that no it's not normal to live with this amount of pain, Christ. It's liberating in a way.
Because I have lived with a huge amount of pain most of my life, and for most of my life, I've had medical professionals either tell me it's in my head or that it's not that bad. (Evidently the only way to have certain doctors believe you're in pain is to roll around on the floor screaming and stoic me doesn't do that.) I bought that for a while. I pushed through the pain. Just a few years ago, during the time I've been on LJ actually, I had four years where I had such intense pain in my feet that it felt like knives stabbing into my soles every time I took a step. I never went to the doctor because, well, they've never believed me before. Their typical response is "well, try losing a bit of weight and see if it goes away" to which I say fuck you, assholes, that is not the answer to every medical conundrum to which you cannot find answer. So I just grit my teeth and walked anyway because I had to.
Now I'm being told I don't have to do that. I have to admit that throws me for a loop.
One of the primary symptoms of Ehlers-Danlos is joint dislocation. When I was a toddler, my dad used to dislocate my shoulders just by picking me up the wrong way by my arms. Trust me when I say it upset him as much or more than it upset me. Since I was a pre-teen, my knee's twisted out of its socket pretty regularly and without notice, my kneecap ripping around to the back of my knee, leaving me on the sidewalk in blinding pain with just one wrong step. I can pop a finger out of joint just by pushing it the wrong way, I learned quickly that the lotus position and my hips are not good meditative combination, and the number of times I've been on crutches in my life for a sprained ankle just shouldn't even be numerated. Lately I've been popping out the joints in my knee, my shoulders, my hips, my spine, my feet, my hands and my ribs, just by standing wrong, lying down wrong, sitting wrong, lifting things the wrong way or even going down steps. (I can run up several flights of steps with no issues, but the moment I start going down them, my knees scream in pain and start to wobble. I'm learning that it's okay to take an elevator down; it doesn't make me lazy, no matter what other people may think.)
Part of this dislocation happens because my joints are hyper-mobile, or more colloquially, I have some double-jointedness. I can extend my knees slightly backward, bowing my leg into a slightly concave position. I can bend my fingers and toes in outrageous positions: I can bend some of my toes back to nearly touch the top of my feet and I can bend several of my fingers back past a ninety-degree angle. I can even bend my thumbs so that they lie against my forearms. When I was a kid, I used to put my feet behind my head; my favorite way of sitting as a child was to lie on my back on the floor and lift my legs up so my knees were on the floor next to my shoulders. (Yeah, that doesn't happen any more with my old body.) I always thought this hyper-mobility was just a cool trick; I assumed everyone could do it. Er. It seems I was wrong.
Over the past few years, I've had some mobility issues. (See the four years of foot pain previously mentioned--that was most likely caused by bones in my foot constantly sliding out of joint without me realizing it.) I'm not yet in need of mobility assistance, but I've had stretches of time where I've had to move slower because of pain or be careful of things like going down stairs the way I've had to be cognizant of them this summer. Right now I spend almost every day in pain of some sort; I wake up in pain because some joint--usually my shoulder or hip--has gone out during the night, or when I stand up after having been sitting at my desk at work for several hours, my hip gives out, or I move my leg the wrong way and my knee protests. For now a daily regimen of Advil as often as I can take it helps, as does walking as much as I can, ironically: as part of my commute I usually walk 2.5 miles on days that I go in to work; the days I don't, my pain ratio is higher. But even with that I have to be careful: carrying more than my MacBook Air in my backpack or taking the wrong sidewalk where tree roots cause the pavement to be angled can throw out the small of my back and put me in agony for the rest of the day. I'm not entirely certain how I'm going to manage school next semester. I think there's going to be a lot of digitizing of my reading material going on. Good thing I work in a library with a scanner that does searchable PDFs.
All this requires me to be really present in my body in a way I haven't been before. Having Ehlers-Danlos means I have to be aware of how much pain I'm having at any given moment--at this particular moment, typing this, I can feel the pain in my neck that's radiating out to my shoulder because sitting here on the couch typing on my computer makes me hold my body in a way that puts stress on those joints. I can feel the dull ache in my ankle that I've had all day, the subtle pain in my fingers and wrists from typing which will ease once I have a chance to pop their joints, and the throb of the arthritis that's started to develop in my lower hip according to my doctor. I have to know how many spoons I have throughout the day as well--I have less tonight because I had to give the sermon at my church this morning which has required a lot more effort and focus this weekend than I'd normally exert on a Saturday/Sunday. (Not to mention the emotional drain of preaching about racism to a group of affluent, white Episcopalians.)
It's weird for me to be so present in my body. I've spent most of the past 41 years of my life disassociating from my body, between the constant pain and the six years of childhood sexual abuse. I am most definitely not an embodied individual. I think that's why I love the Internet so much; here within these pixels I can be unembodied. It doesn't matter here that I have a body that doesn't work right; it doesn't matter that I have a body that I've spent most of my life vastly uncomfortable in to the point that I ignore it.
It's hard to ignore my body now. I've been in the process of coming to terms with it since I had cancer two years ago; I think that's why I've now been able to follow and push for this diagnosis. I've finally come to the place that I can listen to my body, that I can hear what it's telling me, that I can acknowledge when it hurts and when it's tired and when I've pushed it too far--without feeling overwhelming guilt for letting other people down or for letting down my overblown expectations of myself.
Now I'm coming to terms with the fact that as I age, my pain is going to keep growing. It's going to be an issue I have to address with the help of my doctors. And there's a likelihood that my mobility issues are going to grow. Rheumatoid arthritis is something I'll have to keep an eye out for. Concrete floors are hell on my body, even when carpeted. Being aware of how my body moves is not optional. Going down stairs is going to become seriously problematic at some point, and joint replacement is probably going to happen down the road. It is not uncommon for people with EDS to come to a point where they need to rely on a wheelchair when their pain/mobility issues become a little too much. Spoons are going to need to be assessed daily.
I'm tired a lot right now. Friday night I slept twelve hours, then took a two hour nap Saturday afternoon.This afternoon I slept three and a half hours. Spoons again. I won't feel guilty about that, even though my workaholic self tries to tell me those are wasted hours that I could have used more profitably. Fuck that shit. My body needed rest; I gave it rest.
I started labyrinth walking this summer as a spiritual practice; there's a labyrinth at school and one at a Unitarian church near me. It's been good for my head. Walking the labyrinth path allows me to embody prayer and meditation in a way that's helped me start to come to terms with how few spoons I have at the moment. I am without a doubt a natural workaholic. I like to call myself lazy because there's a (stupid) part of me that thinks I am, but I'm not. I feel at loose ends if I'm not doing something at all times, and it's been hard for me this summer to get to the point where I let my body rest, where I fight my natural tendencies to go-go-GO. But being in the labyrinth, being in that place where the coils of the labyrinth twist and turn on themselves as I wind my way to the center, causing me to reverse direction repeatedly, to look back on where I just was in the course of the spiral, there's something about that constant turning inward and outward that settles my brain and that helps me untangle those ridiculous judgements I make about my body's seeming failures.
Lauren Artress, the Episcopal priest who helped to resurrect the use of labyrinth prayer as a spiritual practice, writes in her book Walking a Sacred Path, that "when we allow ourselves to be whole, we allow new visions to emerge within us and within our cultures." That statement's stuck with me. Allow ourselves to be whole. I think that's what I'm working on right now, letting myself be whole, even though it seems like physically I'm not. Because maybe becoming whole means I have to accept that my body's not whole. It's a bit broken and battered, and that's okay. Because it's still me. And accepting that, well. Maybe that helps to make me whole.
------------------
This entry was originally posted at http://femmequixotic.dreamwidth.org/515012.html where there are currently
comments. You can comment here or there using OpenID.