How did you come to terms with your chronic pain?
April 28, 2015 10:12 AM Subscribe
If you've dealt with chronic pain of any kind, how did you come to terms with your condition?
I have trigeminal neuralgia, a neurological condition that causes chronic, sometimes incapacitating pain. After getting great advice from the green on whether I should pursue surgery, I ended up getting CyberKnife radiation in August. The procedure didn't work—the pain is back and I'm settling into a new regime of medication (and more fun side effects, and tons of doctor's appointments, etc.).
I won't be making any decisions about further surgery for a while, but I'm having a really hard time reconciling myself to the fact that this might be something I have to grapple with for the rest of my life (surgery or no). I'm in therapy, so that side of things is covered, but I'm dealing with tons of questions/issues/emotions as I try to process my diagnosis and the ways in which it's affecting my life.
If you've dealt with chronic pain of any kind, I'd love to hear more about how you came to (are coming to, didn't come to) terms with your condition.
I have trigeminal neuralgia, a neurological condition that causes chronic, sometimes incapacitating pain. After getting great advice from the green on whether I should pursue surgery, I ended up getting CyberKnife radiation in August. The procedure didn't work—the pain is back and I'm settling into a new regime of medication (and more fun side effects, and tons of doctor's appointments, etc.).
I won't be making any decisions about further surgery for a while, but I'm having a really hard time reconciling myself to the fact that this might be something I have to grapple with for the rest of my life (surgery or no). I'm in therapy, so that side of things is covered, but I'm dealing with tons of questions/issues/emotions as I try to process my diagnosis and the ways in which it's affecting my life.
If you've dealt with chronic pain of any kind, I'd love to hear more about how you came to (are coming to, didn't come to) terms with your condition.
Do you have a doctor who specializes in pain management? And a nurse and pharmacist who are pain management focused?
posted by discopolo at 11:08 AM on April 28, 2015
posted by discopolo at 11:08 AM on April 28, 2015
I have had arthritis since I was six years old. I think I have an advantage, if you want to call it that, of having had it from such a young age: I don't remember not ever having it, so it's just a part of who I am. My husband of 21 years developed a chronic condition five years into our marriage that has gotten worse over time and robbed him of the ability to do many things he loves.
It is important to grieve whatever you are losing as a result of the neuralgia. Your life IS changing and no degree of positive thinking will stop that.
There is a time, though, for ending the grieving and assessing your strengths. When I have suffered with particularly debilitating flares of arthritis, I have found it a comfort to lay in bed and sing. You will develop your own ways of dealing.
Perspective is also important. As I grew into adulthood, I found that I could be a great comfort to others struggling with bone pain, especially the elderly who often go unheard. I use that ability to help others, just by listening and offering advice.
Your life is changing but it is not ending. You are still you and the human will has a strong instinct to not only survive, but prevail. This applies to you.
(hugs) and feel free to memail me any time.
posted by harrietthespy at 11:18 AM on April 28, 2015 [10 favorites]
It is important to grieve whatever you are losing as a result of the neuralgia. Your life IS changing and no degree of positive thinking will stop that.
There is a time, though, for ending the grieving and assessing your strengths. When I have suffered with particularly debilitating flares of arthritis, I have found it a comfort to lay in bed and sing. You will develop your own ways of dealing.
Perspective is also important. As I grew into adulthood, I found that I could be a great comfort to others struggling with bone pain, especially the elderly who often go unheard. I use that ability to help others, just by listening and offering advice.
Your life is changing but it is not ending. You are still you and the human will has a strong instinct to not only survive, but prevail. This applies to you.
(hugs) and feel free to memail me any time.
posted by harrietthespy at 11:18 AM on April 28, 2015 [10 favorites]
I permanently damaged my lateral femoral cutaneous nerve 15 or 16 years ago (I've lost count). It has been exhausting and has at times put a real strain on my life, work, and relationships. Sleep has been a consistent issue, both from the pain, and as a side effect of medications.
Coming to terms with it as a permanent aspect to my life has been an evolving process. At first, there were all the doctor's visits and new therapies to try and bad reactions to medications to get through and weird discoveries (such as that damaged nerves don't just hurt, they also create other phantom sensations like heat and cold and wetness and my personal favorite - deep tissue itching as if something is burrowing inside my body; and that I often limp even though there is no reason to; and that I often frown without meaning to, which can make people think that I am mad all the time, when I totally am not). And there's trying to make sure that people don't think that I'm pathetic.
But eventually, hard as it was, it just became habit. It's just my life, now. I made a promise to always be there for my family, so this is part of the cost of that. And honestly, I think the main thing that has moved me forward is to remind myself as often as possible what a small cost this is compared to what so many others have to pay, and what a truly fortunate life I have lived. When it becomes too overwhelming, I try to give something back - to donate, or do something charitable. To help to ease someone else's burden. To do something that makes my time here worthwhile for someone else. Even if only in some small, invisible way. Some days it's no more than buying someone's coffee or throwing an extra tip in the tip jar. It's just a gesture, really. My way of saying, "fuck you, pain - you don't own me."
I'm sorry you have this fight to fight. I wish you all the best.
posted by It's Raining Florence Henderson at 11:25 AM on April 28, 2015 [3 favorites]
Coming to terms with it as a permanent aspect to my life has been an evolving process. At first, there were all the doctor's visits and new therapies to try and bad reactions to medications to get through and weird discoveries (such as that damaged nerves don't just hurt, they also create other phantom sensations like heat and cold and wetness and my personal favorite - deep tissue itching as if something is burrowing inside my body; and that I often limp even though there is no reason to; and that I often frown without meaning to, which can make people think that I am mad all the time, when I totally am not). And there's trying to make sure that people don't think that I'm pathetic.
But eventually, hard as it was, it just became habit. It's just my life, now. I made a promise to always be there for my family, so this is part of the cost of that. And honestly, I think the main thing that has moved me forward is to remind myself as often as possible what a small cost this is compared to what so many others have to pay, and what a truly fortunate life I have lived. When it becomes too overwhelming, I try to give something back - to donate, or do something charitable. To help to ease someone else's burden. To do something that makes my time here worthwhile for someone else. Even if only in some small, invisible way. Some days it's no more than buying someone's coffee or throwing an extra tip in the tip jar. It's just a gesture, really. My way of saying, "fuck you, pain - you don't own me."
I'm sorry you have this fight to fight. I wish you all the best.
posted by It's Raining Florence Henderson at 11:25 AM on April 28, 2015 [3 favorites]
Heh, I'm in the midst of trying to find a diagnosis for my chronic illness, and let me tell you, dealing with pain every day is hard as fuck. You say you're in therapy, but how's that going? Do you discuss the illness specifically? Do you work with them on making goals? It seems that something in therapy might be missing if you're still dealing with questions and emotions about it, are you bringing those up? It can be really hard to do so, even with a therapist.
Personally, I love my therapist and she's been extremely understanding of my illness. So much so that she suggest things to me that she would "never suggest to any other patient." For example I'm to set weekly goals and try to get things done when I have a burst of energy, but to focus on the fact that the world won't fall apart if I can't go the the store on Tuesday or something. (Whereas most people she would have them set daily goals.)
One thing that I've been trying to work on and I think is a good focus is figuring out what you CAN do, and not what you can't. Then work within that space. I'm also coming to terms with the "Well, I can't do that today!" thing and not being disappointed about it. I really do understand and sometimes chronic illness means there's going to be a grieving process for the life you thought you could have, but having to deal with the reality of what you can do. Feel free to message me if you need a buddy.
posted by Crystalinne at 11:30 AM on April 28, 2015 [1 favorite]
Personally, I love my therapist and she's been extremely understanding of my illness. So much so that she suggest things to me that she would "never suggest to any other patient." For example I'm to set weekly goals and try to get things done when I have a burst of energy, but to focus on the fact that the world won't fall apart if I can't go the the store on Tuesday or something. (Whereas most people she would have them set daily goals.)
One thing that I've been trying to work on and I think is a good focus is figuring out what you CAN do, and not what you can't. Then work within that space. I'm also coming to terms with the "Well, I can't do that today!" thing and not being disappointed about it. I really do understand and sometimes chronic illness means there's going to be a grieving process for the life you thought you could have, but having to deal with the reality of what you can do. Feel free to message me if you need a buddy.
posted by Crystalinne at 11:30 AM on April 28, 2015 [1 favorite]
The most useful strategy I've found is consciously choosing where to put my attention. My world has some sucky things in it, and also lots of lovely things. Even when a sucky thing is occupying my attention, the lovely things still exist. Often I can choose to pay attention to the lovelies instead of the suckies. If I have one moment each day when I really notice and appreciate something lovely about being alive (cat on my lap!), that's a very successful day. Or if I just keep myself alive to try again tomorrow, that's OK too.
posted by Corvid at 11:56 AM on April 28, 2015 [4 favorites]
posted by Corvid at 11:56 AM on April 28, 2015 [4 favorites]
Honestly, I have a really good friend who also deals with chronic illness/pain who I can bitch to any time. She doesn't have to write me back -- I know she's often having bad days, too -- but just writing to her helps. That has been the single most helpful thing for me to adjust to this being my new, shitty normal.
Otherwise, I complain on Twitter. So I guess what I am saying is that complaining helps me a lot :]
It was a huge moment for me to accept that pain management wasn't going to make me be pain-free forever. It helps me to tolerate it. By adjusting my expectations, I have felt more satisfied with my pain management.
And yes, celebrate the little things. I made it through the workday! I got out of bed! I put makeup on! And the big things: I went to the grocery store! I cleaned the bathtub! It's still really difficult for me to accept that going to the grocery store can wipe me out.
Which also reminds me: if you can afford it, there is no shame in services that will let you save your time and energy for things you'd rather do. I use Amazon Prime for everything I possibly can. If I could afford it, I'd have someone come in and clean regularly.
I'll be thinking of you and this post, and if I think of anything else, I'll pop back in. Best wishes to you.
posted by fiercecupcake at 12:21 PM on April 28, 2015 [4 favorites]
Otherwise, I complain on Twitter. So I guess what I am saying is that complaining helps me a lot :]
It was a huge moment for me to accept that pain management wasn't going to make me be pain-free forever. It helps me to tolerate it. By adjusting my expectations, I have felt more satisfied with my pain management.
And yes, celebrate the little things. I made it through the workday! I got out of bed! I put makeup on! And the big things: I went to the grocery store! I cleaned the bathtub! It's still really difficult for me to accept that going to the grocery store can wipe me out.
Which also reminds me: if you can afford it, there is no shame in services that will let you save your time and energy for things you'd rather do. I use Amazon Prime for everything I possibly can. If I could afford it, I'd have someone come in and clean regularly.
I'll be thinking of you and this post, and if I think of anything else, I'll pop back in. Best wishes to you.
posted by fiercecupcake at 12:21 PM on April 28, 2015 [4 favorites]
I've been diagnosed with Fibromyalgia since 2006. Honestly, after a while I've learned to adapt to being in pain most of the time. I've been lucky in the last few years to have found a combination of exercise and medication that keeps my pain to a low grade for 90% of my time. Initially it was really difficult to come to terms with the things I couldn't do any more because I just didn't have the stamina. I was fairly active and never hesitate to push myself through a physical hurdle to get to the other side. I learned very quickly that I could no longer push myself like that. It was hard to accept that there are just some times I have to decide between hurting tomorrow and doing this thing. Nine times out of ten, I pick do the thing and just make sure I have time to recover later. But sometimes, particularly on vacations, I have chosen to not do the thing so that I can have more time in the moment not recovering.
But the other massive challenge that I'm still trying to sort out is that it's very, very hard to listen to your body when it is the equivalent of the boy who cried wolf all the time.
A few months ago my shoulder started tingling. I thought it was just a new facet of the fibro and ignored it. After Pilates, it hurt one day, more than normal. I ignored, thinking I had just over done it. Fast forward a few months, and I tried to climb a tree and got slightly stuck and hung by the arm with the weak shoulder. Epic pain ensued that was clearly not part of the Fibro. I had probably injured in slightly months before and never let it heal properly because the pain wasn't sufficient enough to attract my attention. As a result, I had a torn rotator cuff and ended up having to immobilize the shoulder for a few days in order to let it really heal. It's still a little tender, but I'm aware of it and I've been doing exercises to strengthen it gently. Doctors that are unfamiliar with chronic pain look at you funny when you tell them you don't know how long you've been hurting.
posted by teleri025 at 12:34 PM on April 28, 2015 [8 favorites]
But the other massive challenge that I'm still trying to sort out is that it's very, very hard to listen to your body when it is the equivalent of the boy who cried wolf all the time.
A few months ago my shoulder started tingling. I thought it was just a new facet of the fibro and ignored it. After Pilates, it hurt one day, more than normal. I ignored, thinking I had just over done it. Fast forward a few months, and I tried to climb a tree and got slightly stuck and hung by the arm with the weak shoulder. Epic pain ensued that was clearly not part of the Fibro. I had probably injured in slightly months before and never let it heal properly because the pain wasn't sufficient enough to attract my attention. As a result, I had a torn rotator cuff and ended up having to immobilize the shoulder for a few days in order to let it really heal. It's still a little tender, but I'm aware of it and I've been doing exercises to strengthen it gently. Doctors that are unfamiliar with chronic pain look at you funny when you tell them you don't know how long you've been hurting.
posted by teleri025 at 12:34 PM on April 28, 2015 [8 favorites]
it's very, very hard to listen to your body when it is the equivalent of the boy who cried wolf all the time
That's a very good, very important point. I'd favorite that several times, if I could! The more your body betrays you, the more you feel the need to fight to ignore it. That can be very problematic, especially if you're at all like me (my nerve damage was actually caused by ignoring pain when I still had the chance to do something about it).
Don't let your fight with your chronic pain distract you from new messages that your body is sending. Those are important, too.
posted by It's Raining Florence Henderson at 12:44 PM on April 28, 2015 [9 favorites]
That's a very good, very important point. I'd favorite that several times, if I could! The more your body betrays you, the more you feel the need to fight to ignore it. That can be very problematic, especially if you're at all like me (my nerve damage was actually caused by ignoring pain when I still had the chance to do something about it).
Don't let your fight with your chronic pain distract you from new messages that your body is sending. Those are important, too.
posted by It's Raining Florence Henderson at 12:44 PM on April 28, 2015 [9 favorites]
For me dealing with chronic pain has been about learning to be completely still inside. When I was a kid I learned that if I tried to do things when I was in pain it got worse. As a small kid I would realize I was in pain and there was nothing I could do about it and nothing anybody else could do about it, so I would try to tough it out and go on playing and doing my chores or whatever. I was a boisterous little kid. I was pretty loud too.
But that made it get bad quickly and that was not good. I had to learn to make the hard-to-bear times be a short as possible by not making it get worse quickly. In those days the longer the lead in, the shorter the most acute time.
I would read until I stopped being able to read and then I would just be as still as possible until that particular bout had cycled its way around and it was over. I learned that being as still as possible in as un-stimulating an environment as possible would keep the pain at a bearable level for the longest time. Any stimulus, such as lights or sounds meant I would be that much more tense and awake.
Rather than avoid the pain the thing I have to do is dwell in it. You may know the pain management technique of dispassionately observing your pain as closely as you can. You can ask yourself questions. Is this pain sharp or burning? Is this pain throbbing or seething? Exactly where is it? Does it move? Change shape? Ebb and flow, swell? If you can focus really closely on the pain without being frightened by it, you can dwell within it and sort of become detached from it, although that isn't the right description because you are observing every nuance of it.
My body, of course sometimes reacts to the pain and my conscious awareness doesn't have any control over what my body is doing. As a kid I would commonly start puking and the moments when I was spasming would be bad moments because they added to the stimulation and stopped me from being limp and motionless. But I also knew that awhile after I puked I would pass out so it meant I was getting closer to the end place, to the morning where I would wake up and not be in pain anymore. So I didn't fear the heightening of the pain when I thrashed or spasmed. I just observed it and dwelt in my body observing the spasm. As an adult I will perhaps go through some neurological funny stuff like twitching (I am guessing I look rather like a dog chasing rabbits in its sleep). But these movements are not something I need to stop or control, the same with vocalizations. They are just things that happen, that I observe, and don't worry about.
When I am in pain the thing I have to do is be in pain and make being in pain my primary activity. If my head wants to stick out at this strange angle, or I want to keep my eyes closed as I walk down the hall to the bathroom, well, so be it. I am just breathing slowly deeply and dreamily and dwelling in the pain, observing it. I had a tax appointment which I am missing? Nothing matters but dwelling in the pain. Tax appointments are unimportant. I had a creative project that I had been longing to work on? That's the way it is, the pain is the only thing that is important and when I am in pain I stay just as still as possible. Being disappointed is not being still. It's thinking. When I am not dealing with the pain I can be disappointed or sad, but my metier is apparently going through pain, not doing creative stuff, so I let it go. It's not even a bad thing, pain.
You know how some of the most important things in life are intangible but really important, like for example your attachment to the person you love best? Pain is the same kind of intangible, totally solid thing like that. I experience it the way I experience my sense of justice, or my love of my home. It is this wall of intangible reality.
I know that any plan I make, any hope or any intention, any need or urgent thing may be completely derailed, that it is unrealistic to make plans. So I don't make plans. I plan on being in pain and if the pain is at a level where I can move and do things, then I enjoy moving and doing things. But the idea of a tomorrow, of doing things is just a game, like if-I-win-the-lottery. A lot of the time I get to play the I-am-a-normal-person game. Sometimes I don't. I'm fine either way, no more disappointed than if in fact magic doesn't make me a multi-millionaire. I don't take ordinary life seriously. It's just a what-if scenario. What I am planning to do is to be in pain and pretending perhaps that I will pick up groceries.
This sounds perhaps a little grim, or like I am really a zen master when it comes to pain tolerance, but it's not grim to me. Being in pain and being still in pain is a very quiet place, not a dangerous place, or vulnerable place. And I am not super tough or anything.It may be that I have a poor pain threshold and I am going still when the pain level is a lot lower than many people could tough their way through it. But it's a technique that works for me.
I don't much regret not being able to do the stuff I want to - like running around outside among trees. I would SO love to do that. Or dig in the earth, or mow a lawn. Or walk down the street without first deciding if I am capable of it. Wanting to do that stuff is like wanting to be a brilliant astro-physicist. Or wishing I had been born filthy rich. Or that I had a whole lot of docile male slaves, and a brand new really nice colouring book. It's a silly unrealistic stuff. The reality is that I am Jane the Brown and I am not brilliantly intelligent and I can't walk down a street without first assessing if I could make it down the street or not. There's nothing wrong with that reality.
I dunno if this helps or if you understand it, but that is the way I deal with it. Oh and it's worth mentioning that this passage runs into hyperbole because there are lots of days when the pain is completely negligible. I do an assessment, huh, okay, a twinge in the hip, a twinge in the neck, nothing to speak of and... hey I can prance down the street if I like. I can stride head up, breathing deep and deeper and soak in the feel of the wind - just lovely. The pain rests way back in the distance, perfectly patient. It will come back when it comes back. When it's a good day it's like being eight years old and allowed out of school. Yep, there will be school again tomorrow, but right now I have an eight-year-olds grasp of time and the afternoon is endless.
posted by Jane the Brown at 2:12 PM on April 28, 2015 [8 favorites]
But that made it get bad quickly and that was not good. I had to learn to make the hard-to-bear times be a short as possible by not making it get worse quickly. In those days the longer the lead in, the shorter the most acute time.
I would read until I stopped being able to read and then I would just be as still as possible until that particular bout had cycled its way around and it was over. I learned that being as still as possible in as un-stimulating an environment as possible would keep the pain at a bearable level for the longest time. Any stimulus, such as lights or sounds meant I would be that much more tense and awake.
Rather than avoid the pain the thing I have to do is dwell in it. You may know the pain management technique of dispassionately observing your pain as closely as you can. You can ask yourself questions. Is this pain sharp or burning? Is this pain throbbing or seething? Exactly where is it? Does it move? Change shape? Ebb and flow, swell? If you can focus really closely on the pain without being frightened by it, you can dwell within it and sort of become detached from it, although that isn't the right description because you are observing every nuance of it.
My body, of course sometimes reacts to the pain and my conscious awareness doesn't have any control over what my body is doing. As a kid I would commonly start puking and the moments when I was spasming would be bad moments because they added to the stimulation and stopped me from being limp and motionless. But I also knew that awhile after I puked I would pass out so it meant I was getting closer to the end place, to the morning where I would wake up and not be in pain anymore. So I didn't fear the heightening of the pain when I thrashed or spasmed. I just observed it and dwelt in my body observing the spasm. As an adult I will perhaps go through some neurological funny stuff like twitching (I am guessing I look rather like a dog chasing rabbits in its sleep). But these movements are not something I need to stop or control, the same with vocalizations. They are just things that happen, that I observe, and don't worry about.
When I am in pain the thing I have to do is be in pain and make being in pain my primary activity. If my head wants to stick out at this strange angle, or I want to keep my eyes closed as I walk down the hall to the bathroom, well, so be it. I am just breathing slowly deeply and dreamily and dwelling in the pain, observing it. I had a tax appointment which I am missing? Nothing matters but dwelling in the pain. Tax appointments are unimportant. I had a creative project that I had been longing to work on? That's the way it is, the pain is the only thing that is important and when I am in pain I stay just as still as possible. Being disappointed is not being still. It's thinking. When I am not dealing with the pain I can be disappointed or sad, but my metier is apparently going through pain, not doing creative stuff, so I let it go. It's not even a bad thing, pain.
You know how some of the most important things in life are intangible but really important, like for example your attachment to the person you love best? Pain is the same kind of intangible, totally solid thing like that. I experience it the way I experience my sense of justice, or my love of my home. It is this wall of intangible reality.
I know that any plan I make, any hope or any intention, any need or urgent thing may be completely derailed, that it is unrealistic to make plans. So I don't make plans. I plan on being in pain and if the pain is at a level where I can move and do things, then I enjoy moving and doing things. But the idea of a tomorrow, of doing things is just a game, like if-I-win-the-lottery. A lot of the time I get to play the I-am-a-normal-person game. Sometimes I don't. I'm fine either way, no more disappointed than if in fact magic doesn't make me a multi-millionaire. I don't take ordinary life seriously. It's just a what-if scenario. What I am planning to do is to be in pain and pretending perhaps that I will pick up groceries.
This sounds perhaps a little grim, or like I am really a zen master when it comes to pain tolerance, but it's not grim to me. Being in pain and being still in pain is a very quiet place, not a dangerous place, or vulnerable place. And I am not super tough or anything.It may be that I have a poor pain threshold and I am going still when the pain level is a lot lower than many people could tough their way through it. But it's a technique that works for me.
I don't much regret not being able to do the stuff I want to - like running around outside among trees. I would SO love to do that. Or dig in the earth, or mow a lawn. Or walk down the street without first deciding if I am capable of it. Wanting to do that stuff is like wanting to be a brilliant astro-physicist. Or wishing I had been born filthy rich. Or that I had a whole lot of docile male slaves, and a brand new really nice colouring book. It's a silly unrealistic stuff. The reality is that I am Jane the Brown and I am not brilliantly intelligent and I can't walk down a street without first assessing if I could make it down the street or not. There's nothing wrong with that reality.
I dunno if this helps or if you understand it, but that is the way I deal with it. Oh and it's worth mentioning that this passage runs into hyperbole because there are lots of days when the pain is completely negligible. I do an assessment, huh, okay, a twinge in the hip, a twinge in the neck, nothing to speak of and... hey I can prance down the street if I like. I can stride head up, breathing deep and deeper and soak in the feel of the wind - just lovely. The pain rests way back in the distance, perfectly patient. It will come back when it comes back. When it's a good day it's like being eight years old and allowed out of school. Yep, there will be school again tomorrow, but right now I have an eight-year-olds grasp of time and the afternoon is endless.
posted by Jane the Brown at 2:12 PM on April 28, 2015 [8 favorites]
I kept searching for "why" I was in pain. Was it a response to something I'd done wrong? Could I, as some medicos suggested, be creating the problems myself? Until I nailed down this answer I continued to struggle against myself, thus adding to my pain.
Learning self-compassion meditation has made a tangible difference, and it's something I can do for myself for free right now anytime. I found the guided meditations and pen&pencil exercises on Kristin Neff's self-compassion.org site to be gentle and helpful.
What I learned: Pain is inevitable, suffering is optional
The ability to share the anger, the sorrow and the coping skills with other folks is precious. It's even better when you share some other interest, whether that's SF/F, gardening or Kabbalah, so that there's some other topic to address as well. Unfortunately and fortunately, there are so many people dealing with chronic pain you can find a like-minded group somewhere on the net.
posted by Jesse the K at 2:26 PM on April 28, 2015 [2 favorites]
Learning self-compassion meditation has made a tangible difference, and it's something I can do for myself for free right now anytime. I found the guided meditations and pen&pencil exercises on Kristin Neff's self-compassion.org site to be gentle and helpful.
What I learned: Pain is inevitable, suffering is optional
The ability to share the anger, the sorrow and the coping skills with other folks is precious. It's even better when you share some other interest, whether that's SF/F, gardening or Kabbalah, so that there's some other topic to address as well. Unfortunately and fortunately, there are so many people dealing with chronic pain you can find a like-minded group somewhere on the net.
posted by Jesse the K at 2:26 PM on April 28, 2015 [2 favorites]
Coming to terms with pain and associated debility is a lifetime process. In a world where I was well, I would be three hours from home comforting friends at the celebration of the life of a beloved five-year-old who drowned last week. I can't be there and that hurts my heart some. But I have to let go of the expectation that I can do everything I want.
There are certain activities I've just stopped trying to do (attend standing-only live music) and others that I limit (physical outdoors stuff--I can swim at the waterpark on good days but not for very long). I do a lot of things online and am working on doing more casual stuff like having friends over for movie nights, to keep being social within the limits my body gives me. But I try to focus on what I can do and what I enjoy of that instead of focusing on the things I cannot. If I were 100% well, I'd still miss a lot of things because I can't be two places at once. Pain and poor health mean I just miss some more.
posted by immlass at 2:56 PM on April 28, 2015 [3 favorites]
There are certain activities I've just stopped trying to do (attend standing-only live music) and others that I limit (physical outdoors stuff--I can swim at the waterpark on good days but not for very long). I do a lot of things online and am working on doing more casual stuff like having friends over for movie nights, to keep being social within the limits my body gives me. But I try to focus on what I can do and what I enjoy of that instead of focusing on the things I cannot. If I were 100% well, I'd still miss a lot of things because I can't be two places at once. Pain and poor health mean I just miss some more.
posted by immlass at 2:56 PM on April 28, 2015 [3 favorites]
I have RA & OA, so I pretty much hurt all the time. My pain is mine. I don't ignore it. But I'm not afraid of it. I don't take painkillers.
In the beginning, I really was afraid of it. I thought, if I move, it will get worse. Now, I know if I spend an hour gardening, I might spend a week or two recovering. My hands might not work. I might not be able to bend over or vacuum the floor or lift a carton of milk. But I will recover, so I don't let that stop me from gardening. I just build recovery time into my schedule.
It's really important to learn that you have some control over your pain. You can't stop it from coming, but it can't stop you from living.
posted by clarkstonian at 3:41 PM on April 28, 2015 [2 favorites]
In the beginning, I really was afraid of it. I thought, if I move, it will get worse. Now, I know if I spend an hour gardening, I might spend a week or two recovering. My hands might not work. I might not be able to bend over or vacuum the floor or lift a carton of milk. But I will recover, so I don't let that stop me from gardening. I just build recovery time into my schedule.
It's really important to learn that you have some control over your pain. You can't stop it from coming, but it can't stop you from living.
posted by clarkstonian at 3:41 PM on April 28, 2015 [2 favorites]
If you haven't seen it: The Spoon Theory
When I was a lot sicker, I kind of mentally extended that metaphor. Some days I don’t have any spoons, but I might have a thousand chopsticks instead. What can I do with a thousand chopsticks that I wouldn’t normally do and that might enhance my life? I kind of have workaholic tendencies. Being too sick to work led to me making my peace with playing video games and watching movies and doing the things I could do, even if they weren't the things I felt I should be doing or wanted to be doing. I still work hard on being realistic about what I can do and doing that. I try to fill my life as best I can, in spite of the many things I am unable to do.
Sometime during the roughly 3 1/2 years when I had constant, excruciating please kill me NOW pain, I came to a point where the one and only thing I wanted was to hurt less. I once told someone “I would sell my soul to the devil for 24 hours without pain.” I began hanging out in alternative medicine circles online and trying stuff, figuring that either I would find a better answer than doctors were giving me or I would accidentally die (but relatively quickly) from trying random stuff. Either outcome looked superior to me compared to what I was being told I should accept as my fate.
Over time, I found some things that really helped. There is a helluva lot of information available these days, more than any one person can really know. A great deal of it can be accessed via Internet and a lot of patients out there are very knowledgeable -- often, far more knowledgeable about their own condition than most general practitioners -- and they keep up with the latest studies ("as if their life depended upon it" -- because it does). There are lots of people who are using the latest in research about nutrition and about how the body works to find management modalities that make life a lot more bearable and a lot more worth living.
I still have some days where I hurt a lot, but my worst days now are better than my best days used to be. Compared to what I have been through -- and compared to what doctors told me my fate was -- this is the happy, shiny version of my life where unicorns fart rainbows. Knowing how much worse it is supposed to be makes it a lot easier to rise to the occasion, even on really bad days.
I expect to always have significant limitations, but I no longer require medication. The solutions I have found mean that a lot of my limitations look more like living like a Kosher Jew than they do living with a chronic illness. I have very, very strict dietary and lifestyle restrictions and I can't do a lot of things other people do, but if you didn't know that it is because eating or doing the wrong thing can cause me to, say, start bleeding from the nose or suddenly get so sick I need to be rushed to the ER, you might think I just belonged to some obscure religion you had not heard of because I eat weird and I dress weird and so on.
I have been doing this a lot of years and the gains have been slow and gradual but cumulative. It took a long time to get to where I am now, however, I didn’t do the things I did in hopes of someday feeling better. I did what I did because the one and ONLY thing I wanted was to hurt less (and get enough relief from the pain so I could fall asleep at night) and I was doing things that made me hurt less in the here and now -- today, this hour. After a few months of doing things that helped reduce the pain, I realized I was also getting less sick. I eventually concluded that things that genuinely reduced the pain were things that somehow treated the root cause of the pain, even though I didn't understand the mechanism at first.
Similar to what kmennie said, I found that chronic illness lists had valuable information but most people on them were there to complain more than to problem solve. It was not really acceptable to talk about what I was doing to problem solve. People with really terrible prognoses are often just really angry about the hand they have been dealt (and rightly so) and some of them seem to cope by 1) resigning themselves to the fact that this is as good as it gets and 2) going LA LA LA NOT LISTENING to anything that disagrees with that because they are so tired of getting their hopes up and then getting them dashed or of taking a risk on a new treatment modality only to have it cause a lot of problems and not really fix anything.
I don't know how you could go about looking for the folks with your condition who are focused on problem solving and finding the most constructive answers available. I don't know because I have gotten so much hostility for trying to talk to people about what helped me that I basically left all the chronic illness lists. I have reason to believe that I am not the only one who was doing something positive and was given so much grief over it that they stopped bothering to try to share the good news.
So I don't know where you could look. But I do know that with any condition, there are people getting better results than the doctors say they should be getting. Some of the things they seem to do:
Thirty-six is still young compared to average life expectancy for normal, healthy people and the condition in question still involves a lot of suffering. But there are significant medical advances happening in the world today that are making real and measurable differences in the lives of people with serious medical conditions. Those people hoping for some miracle cure -- some pill that you pop once and it is all fixed forever -- tend to be really bitter. They feel that various foundations are promising that and not delivering. They feel lied to and mistreated and shortchanged. But some people are able to focus on the very real gains that are being made and to continue to see the cup as half full rather than half empty.
I also try to have the most fulfilling life I can have TODAY because today is all I have. Although I think I have many more years ahead of me, according to doctors, I "should" have died years ago (and I nearly did). So I have a policy of not waiting to get a life. I live as fully as I can today. I try to be a good friend today. I try to tell people what I really think or feel today. I try to do things that enhance my life in the here and now -- and, yes, sometimes the most life-enhancing thing I can do is rest and keep myself mentally occupied and not be judgmental about how little I am doing. I also try hard to not live for today in a way that is likely to damage my future. It's a careful balancing act in that regard.
Basically, I sort of didn't "come to terms" with my condition -- at least not in the sense of simply accepting the terrible prognosis I was being told to accept. I refused to go quietly. I chose to fight like hell every step of the way. Somewhere along the way, that began to pay off and the fact that my condition has actually improved, in spite of being incurable, is how I can accept it and be mostly at peace with the hand life dealt me.
posted by Michele in California at 3:44 PM on April 28, 2015 [6 favorites]
When I was a lot sicker, I kind of mentally extended that metaphor. Some days I don’t have any spoons, but I might have a thousand chopsticks instead. What can I do with a thousand chopsticks that I wouldn’t normally do and that might enhance my life? I kind of have workaholic tendencies. Being too sick to work led to me making my peace with playing video games and watching movies and doing the things I could do, even if they weren't the things I felt I should be doing or wanted to be doing. I still work hard on being realistic about what I can do and doing that. I try to fill my life as best I can, in spite of the many things I am unable to do.
Sometime during the roughly 3 1/2 years when I had constant, excruciating please kill me NOW pain, I came to a point where the one and only thing I wanted was to hurt less. I once told someone “I would sell my soul to the devil for 24 hours without pain.” I began hanging out in alternative medicine circles online and trying stuff, figuring that either I would find a better answer than doctors were giving me or I would accidentally die (but relatively quickly) from trying random stuff. Either outcome looked superior to me compared to what I was being told I should accept as my fate.
Over time, I found some things that really helped. There is a helluva lot of information available these days, more than any one person can really know. A great deal of it can be accessed via Internet and a lot of patients out there are very knowledgeable -- often, far more knowledgeable about their own condition than most general practitioners -- and they keep up with the latest studies ("as if their life depended upon it" -- because it does). There are lots of people who are using the latest in research about nutrition and about how the body works to find management modalities that make life a lot more bearable and a lot more worth living.
I still have some days where I hurt a lot, but my worst days now are better than my best days used to be. Compared to what I have been through -- and compared to what doctors told me my fate was -- this is the happy, shiny version of my life where unicorns fart rainbows. Knowing how much worse it is supposed to be makes it a lot easier to rise to the occasion, even on really bad days.
I expect to always have significant limitations, but I no longer require medication. The solutions I have found mean that a lot of my limitations look more like living like a Kosher Jew than they do living with a chronic illness. I have very, very strict dietary and lifestyle restrictions and I can't do a lot of things other people do, but if you didn't know that it is because eating or doing the wrong thing can cause me to, say, start bleeding from the nose or suddenly get so sick I need to be rushed to the ER, you might think I just belonged to some obscure religion you had not heard of because I eat weird and I dress weird and so on.
I have been doing this a lot of years and the gains have been slow and gradual but cumulative. It took a long time to get to where I am now, however, I didn’t do the things I did in hopes of someday feeling better. I did what I did because the one and ONLY thing I wanted was to hurt less (and get enough relief from the pain so I could fall asleep at night) and I was doing things that made me hurt less in the here and now -- today, this hour. After a few months of doing things that helped reduce the pain, I realized I was also getting less sick. I eventually concluded that things that genuinely reduced the pain were things that somehow treated the root cause of the pain, even though I didn't understand the mechanism at first.
Similar to what kmennie said, I found that chronic illness lists had valuable information but most people on them were there to complain more than to problem solve. It was not really acceptable to talk about what I was doing to problem solve. People with really terrible prognoses are often just really angry about the hand they have been dealt (and rightly so) and some of them seem to cope by 1) resigning themselves to the fact that this is as good as it gets and 2) going LA LA LA NOT LISTENING to anything that disagrees with that because they are so tired of getting their hopes up and then getting them dashed or of taking a risk on a new treatment modality only to have it cause a lot of problems and not really fix anything.
I don't know how you could go about looking for the folks with your condition who are focused on problem solving and finding the most constructive answers available. I don't know because I have gotten so much hostility for trying to talk to people about what helped me that I basically left all the chronic illness lists. I have reason to believe that I am not the only one who was doing something positive and was given so much grief over it that they stopped bothering to try to share the good news.
So I don't know where you could look. But I do know that with any condition, there are people getting better results than the doctors say they should be getting. Some of the things they seem to do:
- They keep up on the latest studies.
- They read a lot about nutrition and exercise and that kind of thing and they consider diet to be an important part of managing their condition.
- They keep an open mind.
- They are willing to go get a second opinion or a third or a fourth.
- They are willing to travel to see the best specialist they can find and get the best care available for the condition.
- They take very judicious risks -- they regularly try small things that will help a little and build on their successes so that trying new treatment options doesn't lead to serious negative consequences.
Thirty-six is still young compared to average life expectancy for normal, healthy people and the condition in question still involves a lot of suffering. But there are significant medical advances happening in the world today that are making real and measurable differences in the lives of people with serious medical conditions. Those people hoping for some miracle cure -- some pill that you pop once and it is all fixed forever -- tend to be really bitter. They feel that various foundations are promising that and not delivering. They feel lied to and mistreated and shortchanged. But some people are able to focus on the very real gains that are being made and to continue to see the cup as half full rather than half empty.
I also try to have the most fulfilling life I can have TODAY because today is all I have. Although I think I have many more years ahead of me, according to doctors, I "should" have died years ago (and I nearly did). So I have a policy of not waiting to get a life. I live as fully as I can today. I try to be a good friend today. I try to tell people what I really think or feel today. I try to do things that enhance my life in the here and now -- and, yes, sometimes the most life-enhancing thing I can do is rest and keep myself mentally occupied and not be judgmental about how little I am doing. I also try hard to not live for today in a way that is likely to damage my future. It's a careful balancing act in that regard.
Basically, I sort of didn't "come to terms" with my condition -- at least not in the sense of simply accepting the terrible prognosis I was being told to accept. I refused to go quietly. I chose to fight like hell every step of the way. Somewhere along the way, that began to pay off and the fact that my condition has actually improved, in spite of being incurable, is how I can accept it and be mostly at peace with the hand life dealt me.
posted by Michele in California at 3:44 PM on April 28, 2015 [6 favorites]
Note: I wrote the below in advice form when the OP asked for stories. Sorry, but this is the advice I would give myself at the beginning of my understanding I would have pain for the rest of my life.
I have chronic nerve pain from a spinal cord injury. I've been screaming with pain today because, I don't know, it's windy or some fucking other reason.
a. Chronic pain builds character. This is glib, I know, but it's true. You become stronger once you overcome your fear of pain. Pain is really primal, and when you get to a point where your body feels like it's tearing itself apart and you can go, right, what's next then, you've achieved a certain level of bad-assness. Use this power for good, and it sort of justifies/romanticizes what you experience. I don't know if this makes sense.
b. Give yourself a certain point of experiencing pain and then say, "fuck it. I'm binge watching X" and do whatever makes you feel comfortable. Let people around you know you need your space.
c. Scream into a pillow
c.1. You might read about Frieda Kahlo, the amazing Mexican artist who experienced pain throughout her life. Sartre also had some chronic pain problem. He said, "I have a dog called pain." I kind of understand that? Anyway.
c.2. If you are creative, put the pain into your creativity. Your pain puts you into a relatively small company of people, and communicating what you feel via writing, art, music, whatever, I think is a good thing for you and for others.
NOTE D AND E AND F ARE IF YOU HAVE DOUBTS ABOUT YOUR MEDS/DOCS
d. medication: it sounds like you are dealing with a shit-ton of it, and if it is opiates, you might consider whether those drugs help more than they hurt. I hated myself when I was doped up -- the side effects were bad, and withdrawal was hard.
e. Pursue other treatments for pain. I don't take opiates and manage my pain with neurontin and weed. I'm going to pursue acupuncture, because the wacky weather has made my pain worse these last few months. And opiates, for me, were just evil.
f. Also, the medical profession can be really hard on people who seek medication for pain. As I understand it, via askmetafilter no less, is that doctors are facing increased liability for damages resulting from their prescribing pain relief medication. I guess my advice is to just prepare for this and not let the bastards get you down.Doctors, I know, mean well, but sometimes it's just shitty for the health care consumer.
Keep on truckin'
posted by angrycat at 5:09 PM on April 28, 2015 [2 favorites]
I have chronic nerve pain from a spinal cord injury. I've been screaming with pain today because, I don't know, it's windy or some fucking other reason.
a. Chronic pain builds character. This is glib, I know, but it's true. You become stronger once you overcome your fear of pain. Pain is really primal, and when you get to a point where your body feels like it's tearing itself apart and you can go, right, what's next then, you've achieved a certain level of bad-assness. Use this power for good, and it sort of justifies/romanticizes what you experience. I don't know if this makes sense.
b. Give yourself a certain point of experiencing pain and then say, "fuck it. I'm binge watching X" and do whatever makes you feel comfortable. Let people around you know you need your space.
c. Scream into a pillow
c.1. You might read about Frieda Kahlo, the amazing Mexican artist who experienced pain throughout her life. Sartre also had some chronic pain problem. He said, "I have a dog called pain." I kind of understand that? Anyway.
c.2. If you are creative, put the pain into your creativity. Your pain puts you into a relatively small company of people, and communicating what you feel via writing, art, music, whatever, I think is a good thing for you and for others.
NOTE D AND E AND F ARE IF YOU HAVE DOUBTS ABOUT YOUR MEDS/DOCS
d. medication: it sounds like you are dealing with a shit-ton of it, and if it is opiates, you might consider whether those drugs help more than they hurt. I hated myself when I was doped up -- the side effects were bad, and withdrawal was hard.
e. Pursue other treatments for pain. I don't take opiates and manage my pain with neurontin and weed. I'm going to pursue acupuncture, because the wacky weather has made my pain worse these last few months. And opiates, for me, were just evil.
f. Also, the medical profession can be really hard on people who seek medication for pain. As I understand it, via askmetafilter no less, is that doctors are facing increased liability for damages resulting from their prescribing pain relief medication. I guess my advice is to just prepare for this and not let the bastards get you down.Doctors, I know, mean well, but sometimes it's just shitty for the health care consumer.
Keep on truckin'
posted by angrycat at 5:09 PM on April 28, 2015 [2 favorites]
I've written before about coping with my chronic illness, it may help you.
posted by smoke at 6:43 PM on April 28, 2015
posted by smoke at 6:43 PM on April 28, 2015
From a Metafilter comment I made a few years back:
A few years ago I had a very painful condition that looked like it was going to be with me for the rest of my life. (It eventually got a lot better, knock wood, but I had a few very painful and scary years there.) During the worst of it I heard an NPR interview with George Clooney where he talked about dealing with chronic pain from a serious back injury. He said something to the effect that the pain was intolerable, until he learned to stop expecting it to get better. In other words, he had spent every day comparing his pain to how he expected to feel normally, and he just kept waiting to get better and it was endlessly frustrating. But when he stopped waiting to get better and learned to take each day as it came, the pain became much easier to bear. I'm not putting it as well as he did, but the idea did make sense to me and it actually helped get me through a really rough period. I definitely did not expect to get life-changing advice from the dude from ER!
posted by Ursula Hitler at 7:32 PM on April 28, 2015 [4 favorites]
A few years ago I had a very painful condition that looked like it was going to be with me for the rest of my life. (It eventually got a lot better, knock wood, but I had a few very painful and scary years there.) During the worst of it I heard an NPR interview with George Clooney where he talked about dealing with chronic pain from a serious back injury. He said something to the effect that the pain was intolerable, until he learned to stop expecting it to get better. In other words, he had spent every day comparing his pain to how he expected to feel normally, and he just kept waiting to get better and it was endlessly frustrating. But when he stopped waiting to get better and learned to take each day as it came, the pain became much easier to bear. I'm not putting it as well as he did, but the idea did make sense to me and it actually helped get me through a really rough period. I definitely did not expect to get life-changing advice from the dude from ER!
posted by Ursula Hitler at 7:32 PM on April 28, 2015 [4 favorites]
After awhile, you just have to integrate the pain into who you are and own it. I've had two back surgeries over the years, the last one for a ruptured thoracic disc that had spread and calcified up along my spine.
Pain is pretty much part of my daily life. I just learn my limits, and stay within them, no matter how frustrating it may be. It's who I am now, just like the color of my eyes.
posted by Thorzdad at 8:51 PM on April 28, 2015
Pain is pretty much part of my daily life. I just learn my limits, and stay within them, no matter how frustrating it may be. It's who I am now, just like the color of my eyes.
posted by Thorzdad at 8:51 PM on April 28, 2015
I've got FMS/CFS, and although the FMS is constant, the CFS has really taken over in the last few years.
I was diagnosed in '95 or thereabouts. I've felt cheated out of so many things in life, and I know my physical condition played some role in the ending of my marriage.
In addition to all the good words above, let me add two things that help me:
1) Don't spend inordinate amounts of time online reading about your TN and what other folks with it go through. Naturally you want information, and you want to know you're not alone. That's fine, especially here. But don't obsess. I've realized that the more time I spend focused on my fibromyalgia, the more I'm aware of the pain. If I ignore it, then it tends to become part of the natural background noise of my life.
2) Don't fight it emotionally. I'd love to give credit where it's due, but I don't remember where I picked up that gem. I spent a lot of time angry about the pain. That becomes a feedback loop and (for me, anyway: YMMV, as always) adds to the pain. When I realize I'm hurting (like now, while I'm typing this), I just note it. I don't get emotionally involved with the pain. That emotional distance really helps.
To quote Red Green: "I'm rootin' for you. We're all in this together."
posted by bryon at 3:29 AM on April 29, 2015
I was diagnosed in '95 or thereabouts. I've felt cheated out of so many things in life, and I know my physical condition played some role in the ending of my marriage.
In addition to all the good words above, let me add two things that help me:
1) Don't spend inordinate amounts of time online reading about your TN and what other folks with it go through. Naturally you want information, and you want to know you're not alone. That's fine, especially here. But don't obsess. I've realized that the more time I spend focused on my fibromyalgia, the more I'm aware of the pain. If I ignore it, then it tends to become part of the natural background noise of my life.
2) Don't fight it emotionally. I'd love to give credit where it's due, but I don't remember where I picked up that gem. I spent a lot of time angry about the pain. That becomes a feedback loop and (for me, anyway: YMMV, as always) adds to the pain. When I realize I'm hurting (like now, while I'm typing this), I just note it. I don't get emotionally involved with the pain. That emotional distance really helps.
To quote Red Green: "I'm rootin' for you. We're all in this together."
posted by bryon at 3:29 AM on April 29, 2015
I have chronic physical pain (achilles tendinopathy, osteoarthritis in knees) and chronic mental pain (depression, which for me manifests not as anhedonia or one of the other innumerable variations on depression but as acute emotional and mental pain). The two things are intertwined, of course, as well. For example, it can be hard to tell whether I'm not doing something because of the depression or because it physically hurts to do it. And of course, there is a feedback loop between your mental state and your physical state.
I am still looking for new ways to manage pain so think of this as very much work-in-progress stuff rather than I have all (or even any) of the answers. I have been really interested to read others' answers and have some new things to try. But here are some things that work for me.
- Kind of along the lines of Allie Brosh being the champion because she wins all the time, I try to give myself lots of encouragement even for small things. Sometimes I use the "I win" phrase, sometimes I use "Achievement unlocked!" because I play computer games. For example: got out of bed - I win! Replaced the toilet roll - I win! Achievement unlocked: care and feeding of kitty! It is silly, but silliness is better than pain. And it keeps the focus small and achievable, which is good, and also emphasises what I can and do do, rather than brooding over all the things I can't do or don't do or that are wrong with me.
- It can be a fine line between dwelling with the pain and reinforcing the pain. Although I am normally in favour of accepting the pain and not fighting it, there are times when it becomes a self-reinforcing spiral of doom. In those cases it is better to interrupt the spiral by doing something else, anything else. I find it is helpful to talk to one of my close friends (there aren't many who can put up with this on a regular basis, they are worth their weight in something worth even more than gold) or just make myself read or pat the kitty or sit on the couch and feel horribly in pain instead of lying in bed in horrible pain because at least it's different.
- Try to remember that there will be good days and bad days. If you are having a good day, enjoy it while it lasts! Don't be too suspicious or hold yourself back from things if they don't actually hurt - do them and enjoy it not hurting, screw any future payback! Because there will also always be bad days, and if you are having one of those, don't give yourself a hard time or blame yourself for having done X when you shouldn't've or not having done Y when that would have helped. Some days it's not under your control, just be kind to yourself.
posted by Athanassiel at 7:45 PM on April 29, 2015 [2 favorites]
I am still looking for new ways to manage pain so think of this as very much work-in-progress stuff rather than I have all (or even any) of the answers. I have been really interested to read others' answers and have some new things to try. But here are some things that work for me.
- Kind of along the lines of Allie Brosh being the champion because she wins all the time, I try to give myself lots of encouragement even for small things. Sometimes I use the "I win" phrase, sometimes I use "Achievement unlocked!" because I play computer games. For example: got out of bed - I win! Replaced the toilet roll - I win! Achievement unlocked: care and feeding of kitty! It is silly, but silliness is better than pain. And it keeps the focus small and achievable, which is good, and also emphasises what I can and do do, rather than brooding over all the things I can't do or don't do or that are wrong with me.
- It can be a fine line between dwelling with the pain and reinforcing the pain. Although I am normally in favour of accepting the pain and not fighting it, there are times when it becomes a self-reinforcing spiral of doom. In those cases it is better to interrupt the spiral by doing something else, anything else. I find it is helpful to talk to one of my close friends (there aren't many who can put up with this on a regular basis, they are worth their weight in something worth even more than gold) or just make myself read or pat the kitty or sit on the couch and feel horribly in pain instead of lying in bed in horrible pain because at least it's different.
- Try to remember that there will be good days and bad days. If you are having a good day, enjoy it while it lasts! Don't be too suspicious or hold yourself back from things if they don't actually hurt - do them and enjoy it not hurting, screw any future payback! Because there will also always be bad days, and if you are having one of those, don't give yourself a hard time or blame yourself for having done X when you shouldn't've or not having done Y when that would have helped. Some days it's not under your control, just be kind to yourself.
posted by Athanassiel at 7:45 PM on April 29, 2015 [2 favorites]
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-- not using 'normal' productivity metrics for what I get done -- if I have three usable hours to be up and about, great! Three hours! Doesn't matter if that is less than what other people are getting. It's good for me.
-- go and read chronic pain support forums and then don't be, like, 90% of those people. There is a lot of whining out there. No point.
-- this sucks, but it will not orphan my child. In terms of being dealt a bad hand, "not terminal" is pretty advantageous.
posted by kmennie at 11:04 AM on April 28, 2015 [4 favorites]