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FM rant ahead (again...)
Oct. 21st, 2003 08:56 pmFor some reason, this demanded writing while I was in history today, and so I wrote it. I'm not sure if anyone following my journal knows fibromyalgia (the mysterious pain refered to in the text belwo), but this is what runs through my mind when it's at its worst. Some of you may not be interested in these details: the long and the short is, I'm posting this for myself, because I need to get something out there, even if no one reads it.
I can feel it coming on, sometimes. I know the feeling. It always takes me a little while to place it, and though sometimes I can cut it off before it can get to its worst, I will always have to live through even this part of it. When the pain comes, it takes hold, one way or another.
It starts with discomfort in my back. It makes me want to squirm, to stretch my arms out in front of me, roll my shoulders, move anything I can. Usually the rest of me feels strange too, like everything has been screwed loose, almost a loss of control. My limbs feel out of place, disjointed, and I just can’t get comfortable.
Sometimes I catch what this feeling is when everything is still like this, but not always. When I catch it early, like this, I stand up and start to walk until it starts to pass, I try and think of other things, and it usually works. Sometimes I think I’m just tired, and scold myself for going to bed too late, for not eating enough fruit, for not exercising long enough. Stupid of me, really. All of these things trigger the pain that is coming, but the association isn’t made. It’s almost as if a fog has formed in my mind, blocking off that vital knowledge.
By the time the discomfort in my back turns into a lancing pain, and my limbs start to ache, I know I’m in trouble. No amount of squirming can provide even temporary relief: everything hurts, and no matter where I am, I’m in one of the worst places I can be, whether I’m lying in bed, sitting on a chair, or on my feet. There’s no comfort anywhere. Lying down would be so easy... except everything hurts, and I wouldn’t be able to relax.
I have frantic energy from this pain, a desire to escape it. I wish I could take a painkiller, but all I’m allowed is over-the-counter tylenol right now, because my other medications have my liver acting up. I would like to drop into unconsciousness until this pain goes away, but even then I fear it would be there when I wake. There isn’t really much I can do, and I’ve already lost so much control over my body I don’t want to add to it by taking something I probably shouldn’t.
When the pain gets this bad, it’s all I can do to get myself to move. Curling up in a ball and crying is instinct: forcing myself to put one foot in front of the other, pain slowing every movement, is more practical. Sometimes, I hate being practical, but its the only reason I can cope some days. It’s when I’m not practical, when I ignore the logical that tells me not to eat fast food, or to go to sleep now and not in an hour, that this pain comes.
I’m wrapped up tightly in the pain. It shows on my face, even when I try to hide it, though at this point, I don’t really care enough to worry about that. My entire body is tensed up: smiles are strained, and anyone looking can see through those false expressions of happiness. I hate people who don’t bother to look through that strained smile, just as I hate the people who do. I can’t stand much of anything when it hurts this much. All I like is the cool wind against my skin as I walk at a pace that borders on a run. With that wind moving past me, I can almost imagine that it is blowing the pain out of my body. Almost.
I had to stop and explain what this pain was, once. I saw my friends, and went straight for them. I was at school when the pain came that time, and I was miserable. I had to bedroom to retreat to, no living room, no familiar territory. Home was almost an hour away, and a voice on the phone, even the voice of a parent, is not the same. I would only pity myself further, and make them worry.
One of these friends knew something was wrong right away, and jumped up to hug me. That wasn’t comfortable either: nothing ever is when this pain comes, I’m sensitive to touch, to sound, to everything, but the support is still appreciated. I cling to it for as long as I can stand to be so still. I cling to the support in it, to the understanding, however partial, I cling to anything being offered. I don’t have to pretend that the pain doesn’t exist in this moment. It demands recognition, and can’t be ignored, so I acknowledge it in moments like this fully, and with two arms wrapped around me, it feels almost like it has faded for a blessed second, even if it hasn’t, but it returns even before we separate.
The second friend didn’t understand why my face was so strained, why I was nearly in tears. I had to stand there, wringing my hands to distract me from the pain, my voice sounding strange in my own ears, and explain what this was. I have to simplify this thing that controls me so utterly, reduce it to its base elements. I can’t put the fullness of it into words, the need to lie down and cry, the need to keep moving, the pain that threatens to engulf me in its entirety and turn me into nothing but a ball of singing nerves and whimpers and tears.
She doesn’t understand. It’s written all over her face. She knows something is wrong with me, and that I am in pain, but no more. I hate that look of blank sympathy, even in remembrance, the pain now at bay. I shouldn’t. I should be glad that it’s all she can give – I wouldn’t wish this pain on anyone – but I need the right reactions, I need someone who understands what this feels like, what’s burning through me, why even the memory of these moments threatens to send me into further pain and a shower of tears.
It wasn’t long after that that I took off on another walking marathon. I just couldn’t stand still. It hurt too much. It hurt to move too, a lot, but the choice was between standing and hurting, or moving and hurting, and knowing that moving would help the pain pass, even though in this moment, it’s additional agony.
But I keep walking. It’s the only way to cope. Standing still doesn’t help, sitting down and curling up doesn’t help, and wishing it away is even less useful. I want to cry, but I won’t. I want to scream, but I won’t. I want this to stop coming back to haunt me, but it won’t.
I’m never sure when it actually stops. I just know that I’m suddenly exhausted, and that the pain isn’t quite as commanding. Everything is still sore, I still don’t feel quite right, but I can bear to sit still for more than a heart beat. I know the pain won’t go away for hours yet, not fully. Or as fully as it ever does: I live with some degree of pain or another, but I can forget it sometimes, and concentrate on the moment a hand and enjoy it.
This is where the mental consequences really kick in, in this exhaustion. It’s a drastic shift in mindset, and I’m suddenly angry. I’m angry, I’m sullen and I’m upset. I snarl at any opportunity, mutter under my breath and am in a terrible mood. Anyone near me must step on pins and needles or risk having their head bitten off. It doesn’t matter who they are. Family, friend, stranger. I’m furious that I’ve been put through this again, and when it interrupts plans I had. This kind of pain always leaves me in no state to do much of anything. I hate this pain that visits me with a passion, I hate that I surrender to it, I hate that I know that I’ve probably brought it on myself. Sometimes, I’m innocent, and I’ve done everything right, and it still comes. That frustrates me too, but I hate it more when I know it’s my fault, because I have no one to blame but myself. Or maybe I hate it more when it comes for no reason. I don’t know.
I would very often like a friend who understands during these times too. I changed schools this year, and my circle of friends, who, if they did not understand, at least knew what reactions I was looking for, and how I should be treated. Here, in this new place, there is no one who understands the frustration that accompanies these moments, and the absolute hate I have for the lingering pain, lingering weakness. I’m furious at nothing, and furious at everything. I’m just furious. And I know the tears will start falling soon too, and they do. Frustration overflows its bounds, and is fed by the tears. I don’t mind crying, not so much, but I still hate that I’ve been driven to this. My mind is set on repeat, and the same grievances run over and over in my head. Coherence is at a minimum. When I run into people at this point, I’m still angry, but I have larger inclination to be civil. For a short time, at least. Because the pain that lingers reminds me of what just happened, the physical and emotional exhaustion reminds me of what just happened, and that no matter how hard I try, I am not normal.
I can feel it coming on, sometimes. I know the feeling. It always takes me a little while to place it, and though sometimes I can cut it off before it can get to its worst, I will always have to live through even this part of it. When the pain comes, it takes hold, one way or another.
It starts with discomfort in my back. It makes me want to squirm, to stretch my arms out in front of me, roll my shoulders, move anything I can. Usually the rest of me feels strange too, like everything has been screwed loose, almost a loss of control. My limbs feel out of place, disjointed, and I just can’t get comfortable.
Sometimes I catch what this feeling is when everything is still like this, but not always. When I catch it early, like this, I stand up and start to walk until it starts to pass, I try and think of other things, and it usually works. Sometimes I think I’m just tired, and scold myself for going to bed too late, for not eating enough fruit, for not exercising long enough. Stupid of me, really. All of these things trigger the pain that is coming, but the association isn’t made. It’s almost as if a fog has formed in my mind, blocking off that vital knowledge.
By the time the discomfort in my back turns into a lancing pain, and my limbs start to ache, I know I’m in trouble. No amount of squirming can provide even temporary relief: everything hurts, and no matter where I am, I’m in one of the worst places I can be, whether I’m lying in bed, sitting on a chair, or on my feet. There’s no comfort anywhere. Lying down would be so easy... except everything hurts, and I wouldn’t be able to relax.
I have frantic energy from this pain, a desire to escape it. I wish I could take a painkiller, but all I’m allowed is over-the-counter tylenol right now, because my other medications have my liver acting up. I would like to drop into unconsciousness until this pain goes away, but even then I fear it would be there when I wake. There isn’t really much I can do, and I’ve already lost so much control over my body I don’t want to add to it by taking something I probably shouldn’t.
When the pain gets this bad, it’s all I can do to get myself to move. Curling up in a ball and crying is instinct: forcing myself to put one foot in front of the other, pain slowing every movement, is more practical. Sometimes, I hate being practical, but its the only reason I can cope some days. It’s when I’m not practical, when I ignore the logical that tells me not to eat fast food, or to go to sleep now and not in an hour, that this pain comes.
I’m wrapped up tightly in the pain. It shows on my face, even when I try to hide it, though at this point, I don’t really care enough to worry about that. My entire body is tensed up: smiles are strained, and anyone looking can see through those false expressions of happiness. I hate people who don’t bother to look through that strained smile, just as I hate the people who do. I can’t stand much of anything when it hurts this much. All I like is the cool wind against my skin as I walk at a pace that borders on a run. With that wind moving past me, I can almost imagine that it is blowing the pain out of my body. Almost.
I had to stop and explain what this pain was, once. I saw my friends, and went straight for them. I was at school when the pain came that time, and I was miserable. I had to bedroom to retreat to, no living room, no familiar territory. Home was almost an hour away, and a voice on the phone, even the voice of a parent, is not the same. I would only pity myself further, and make them worry.
One of these friends knew something was wrong right away, and jumped up to hug me. That wasn’t comfortable either: nothing ever is when this pain comes, I’m sensitive to touch, to sound, to everything, but the support is still appreciated. I cling to it for as long as I can stand to be so still. I cling to the support in it, to the understanding, however partial, I cling to anything being offered. I don’t have to pretend that the pain doesn’t exist in this moment. It demands recognition, and can’t be ignored, so I acknowledge it in moments like this fully, and with two arms wrapped around me, it feels almost like it has faded for a blessed second, even if it hasn’t, but it returns even before we separate.
The second friend didn’t understand why my face was so strained, why I was nearly in tears. I had to stand there, wringing my hands to distract me from the pain, my voice sounding strange in my own ears, and explain what this was. I have to simplify this thing that controls me so utterly, reduce it to its base elements. I can’t put the fullness of it into words, the need to lie down and cry, the need to keep moving, the pain that threatens to engulf me in its entirety and turn me into nothing but a ball of singing nerves and whimpers and tears.
She doesn’t understand. It’s written all over her face. She knows something is wrong with me, and that I am in pain, but no more. I hate that look of blank sympathy, even in remembrance, the pain now at bay. I shouldn’t. I should be glad that it’s all she can give – I wouldn’t wish this pain on anyone – but I need the right reactions, I need someone who understands what this feels like, what’s burning through me, why even the memory of these moments threatens to send me into further pain and a shower of tears.
It wasn’t long after that that I took off on another walking marathon. I just couldn’t stand still. It hurt too much. It hurt to move too, a lot, but the choice was between standing and hurting, or moving and hurting, and knowing that moving would help the pain pass, even though in this moment, it’s additional agony.
But I keep walking. It’s the only way to cope. Standing still doesn’t help, sitting down and curling up doesn’t help, and wishing it away is even less useful. I want to cry, but I won’t. I want to scream, but I won’t. I want this to stop coming back to haunt me, but it won’t.
I’m never sure when it actually stops. I just know that I’m suddenly exhausted, and that the pain isn’t quite as commanding. Everything is still sore, I still don’t feel quite right, but I can bear to sit still for more than a heart beat. I know the pain won’t go away for hours yet, not fully. Or as fully as it ever does: I live with some degree of pain or another, but I can forget it sometimes, and concentrate on the moment a hand and enjoy it.
This is where the mental consequences really kick in, in this exhaustion. It’s a drastic shift in mindset, and I’m suddenly angry. I’m angry, I’m sullen and I’m upset. I snarl at any opportunity, mutter under my breath and am in a terrible mood. Anyone near me must step on pins and needles or risk having their head bitten off. It doesn’t matter who they are. Family, friend, stranger. I’m furious that I’ve been put through this again, and when it interrupts plans I had. This kind of pain always leaves me in no state to do much of anything. I hate this pain that visits me with a passion, I hate that I surrender to it, I hate that I know that I’ve probably brought it on myself. Sometimes, I’m innocent, and I’ve done everything right, and it still comes. That frustrates me too, but I hate it more when I know it’s my fault, because I have no one to blame but myself. Or maybe I hate it more when it comes for no reason. I don’t know.
I would very often like a friend who understands during these times too. I changed schools this year, and my circle of friends, who, if they did not understand, at least knew what reactions I was looking for, and how I should be treated. Here, in this new place, there is no one who understands the frustration that accompanies these moments, and the absolute hate I have for the lingering pain, lingering weakness. I’m furious at nothing, and furious at everything. I’m just furious. And I know the tears will start falling soon too, and they do. Frustration overflows its bounds, and is fed by the tears. I don’t mind crying, not so much, but I still hate that I’ve been driven to this. My mind is set on repeat, and the same grievances run over and over in my head. Coherence is at a minimum. When I run into people at this point, I’m still angry, but I have larger inclination to be civil. For a short time, at least. Because the pain that lingers reminds me of what just happened, the physical and emotional exhaustion reminds me of what just happened, and that no matter how hard I try, I am not normal.
