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Jul. 24th, 2006
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Jul. 24th, 2006 03:06 pmSo I had an appointment with the neurologist today in the latest bid to figure out what the hell is wrong with my back.
Highlights:
"Gee, I have no idea why you're in pain on your left side. Now, if it were the right side, I can see the problem right here . . ." Sorry, no luck, doc. I *know* I have nerve damage on the right side from the surgery. I have a patch the size of my hand on my right thigh where the nerves are dead and I can't feel touch. My right leg is slightly weaker than the left on a good day (on a bad day the pain in the left makes it weaker). But no, my pain is definitely only on the left side. So much for that theory.
"Your back is like nothing I've ever seen before". Yes, I'm special, I know this. The doctor who did my surgery advanced his career quite nicely by writing a well-received paper about the oddness that is my spine. Not that I'm complaining, he did a great job. The top ten spinal surgeons in a country put ideas in a hat and drew them to decide how they were going to do my surgery, because no one had ever seen a case quite like this before. My poor parents went through hell. No one wants their daughter making medical history, too many things could go wrong. I was very very lucky.
"You have remarkable range of motion for a fusion case" See the last sentence above. Ditto. The physical therapist I went to tried to argue with me that I couldn't possibly have a fusion because no one with a fusion could bend as far as I can. Trust me, I have a fusion. I'm just very lucky.
"Let's try this" Sure thing, doc. Whatever you say. I'll try just about anything at this point. I'm grateful that I can walk, really. So many things could have gone wrong that didn't. I can walk, I can run and dance and hop about. I can skip and twirl. I'm grateful, really. I just wish I could do so without constant pain. Is that too much to ask?
The "this" above being Lyrica. Nice name for a medicine, yes? Lyrica is a nerve pain medication. Since what I am experiencing is definitely nerve pain, despite the fact that we can't determine the cause, we're hoping Lyrica will help. It is still symptom management. We are no closer to finding the root cause of my pain, and the next logical step involves spinal injections, so I'm not really looking forward to that. I may be stuck with simply treating the symptoms for the rest of my life. We'll see.
Highlights:
"Gee, I have no idea why you're in pain on your left side. Now, if it were the right side, I can see the problem right here . . ." Sorry, no luck, doc. I *know* I have nerve damage on the right side from the surgery. I have a patch the size of my hand on my right thigh where the nerves are dead and I can't feel touch. My right leg is slightly weaker than the left on a good day (on a bad day the pain in the left makes it weaker). But no, my pain is definitely only on the left side. So much for that theory.
"Your back is like nothing I've ever seen before". Yes, I'm special, I know this. The doctor who did my surgery advanced his career quite nicely by writing a well-received paper about the oddness that is my spine. Not that I'm complaining, he did a great job. The top ten spinal surgeons in a country put ideas in a hat and drew them to decide how they were going to do my surgery, because no one had ever seen a case quite like this before. My poor parents went through hell. No one wants their daughter making medical history, too many things could go wrong. I was very very lucky.
"You have remarkable range of motion for a fusion case" See the last sentence above. Ditto. The physical therapist I went to tried to argue with me that I couldn't possibly have a fusion because no one with a fusion could bend as far as I can. Trust me, I have a fusion. I'm just very lucky.
"Let's try this" Sure thing, doc. Whatever you say. I'll try just about anything at this point. I'm grateful that I can walk, really. So many things could have gone wrong that didn't. I can walk, I can run and dance and hop about. I can skip and twirl. I'm grateful, really. I just wish I could do so without constant pain. Is that too much to ask?
The "this" above being Lyrica. Nice name for a medicine, yes? Lyrica is a nerve pain medication. Since what I am experiencing is definitely nerve pain, despite the fact that we can't determine the cause, we're hoping Lyrica will help. It is still symptom management. We are no closer to finding the root cause of my pain, and the next logical step involves spinal injections, so I'm not really looking forward to that. I may be stuck with simply treating the symptoms for the rest of my life. We'll see.
Chronic pain (long)
Jul. 24th, 2006 03:18 pmSome thoughts on chronic pain . . .
Those who have never had chronic pain can't possibly understand what it's like. Chronic pain, particularly intermittant chronic pain, is one of the least understood conditions out there.
People try to tell you you're making it up: 'What do you mean you can't do that? You look fine to me!' Just because you can't see pain doesn't mean it's not there. Just because I'm not on crutches or I'm not limping doesn't mean I don't hurt. And yes, I can hurt just sitting here.
If it's intermittant, you have to justify your good days. 'What do you mean you can't come into work today? I saw you out and about yesterday, but *now* you're telling me you can't work. Yeah, right.' Yeah well, yesterday was yesterday, today is today. Just because yesterday was a good day doesn't mean I'm not in pain today.
The pain rules your life. I'm hesitant about making social commitments, particularly ones that require activity or long travel. Because I can't know that I'll be up to going out on any particular day.
If I say I can't do something, don't argue with me. I know my limitations. I may be fine to go out and eat where I can get up occasionally and stretch, but I can't sit in one place through an entire movie. I can go walking in the park, but I cannot sit in a car for 3 hours to go somewhere. I can swim in your pool, but I can't go to the zoo with you -- too much walking. Trust me, these are real limitations. Don't say I look fine. Don't assume that the fact that I say I can't go out with you today means I'm avoiding you. It means I'm in pain and I can't go out. Maybe you'd like to come over? We can watch movies while I lie on my couch on a heating pad. Yes, that really is all I'm good for today. Try me again tomorrow.
And a realisation I came to just recently: chronic pain sufferers have a relationship with their pain that is not unlike the relationship between an abused person and their abuser. We make excuses. We blame ourselves. It's my fault really. I shouldn't have gone to that concert last night. I should have known better. I overdid it and so I deserve not to be able to get out of bed today. I was being silly. If I didn't do all those stupid things like going to concerts and spending the day walking around sightseeing or taking that long trip out of town then I wouldn't hurt so much. So it's my own fault, really. I should have known better . . . We get to the point where we no longer believe that we deserve to be able to do normal things.
We feel shame. We don't want people to know that we simply aren't able to do something because of the pain. It makes us feel weak. Because we should be stronger. We should be able to handle it. And most of us have people who don't understand telling us all the time that we should be able to do things we can't do, and so that shame is reinforced. We either find other excuses ("I didn't really want to go out today anyway, I'm not in the mood") or we grit our teeth and do it, knowing we'll pay the price later (which will, of course, be our own fault).
Chronic pain has a life of its own, and it affects every aspect of the life of the sufferer. People who suffer from chronic pain are more likely to also suffer from depression than non-chronic pain sufferers. Living your life in constant pain with little or no relief is one of the most discouraging and frustrating feelings imaginable. There will be times when you will want to give up. When you would do almost anything just to make the pain stop. There will be times when you will want to throw a temper tantrum that would put a two-year-old to shame. To scream and hit and throw things. You will cry tears of pain and tears of frustration and sometimes you won't know which is which.
The only thing I can ask of you is this: If you know someone who has chronic pain, let them know that they are not alone. Let them know that you understand their limitations and that you will be happy to work within them. Let them know that it is *not* their fault. Let them know that you understand that you can't fix it, but that you are willing to listen to their fears and their frustrations. Understand that their pain is like an unwanted tagalong that will always have to be factored into any plans. Let them know that you understand this and that you don't mind. Let them know that they never have to justify either their good days or their bad days to you. Rejoice with them in the former and be there for them in the latter. They will appreciate it more than you can ever know.
Those who have never had chronic pain can't possibly understand what it's like. Chronic pain, particularly intermittant chronic pain, is one of the least understood conditions out there.
People try to tell you you're making it up: 'What do you mean you can't do that? You look fine to me!' Just because you can't see pain doesn't mean it's not there. Just because I'm not on crutches or I'm not limping doesn't mean I don't hurt. And yes, I can hurt just sitting here.
If it's intermittant, you have to justify your good days. 'What do you mean you can't come into work today? I saw you out and about yesterday, but *now* you're telling me you can't work. Yeah, right.' Yeah well, yesterday was yesterday, today is today. Just because yesterday was a good day doesn't mean I'm not in pain today.
The pain rules your life. I'm hesitant about making social commitments, particularly ones that require activity or long travel. Because I can't know that I'll be up to going out on any particular day.
If I say I can't do something, don't argue with me. I know my limitations. I may be fine to go out and eat where I can get up occasionally and stretch, but I can't sit in one place through an entire movie. I can go walking in the park, but I cannot sit in a car for 3 hours to go somewhere. I can swim in your pool, but I can't go to the zoo with you -- too much walking. Trust me, these are real limitations. Don't say I look fine. Don't assume that the fact that I say I can't go out with you today means I'm avoiding you. It means I'm in pain and I can't go out. Maybe you'd like to come over? We can watch movies while I lie on my couch on a heating pad. Yes, that really is all I'm good for today. Try me again tomorrow.
And a realisation I came to just recently: chronic pain sufferers have a relationship with their pain that is not unlike the relationship between an abused person and their abuser. We make excuses. We blame ourselves. It's my fault really. I shouldn't have gone to that concert last night. I should have known better. I overdid it and so I deserve not to be able to get out of bed today. I was being silly. If I didn't do all those stupid things like going to concerts and spending the day walking around sightseeing or taking that long trip out of town then I wouldn't hurt so much. So it's my own fault, really. I should have known better . . . We get to the point where we no longer believe that we deserve to be able to do normal things.
We feel shame. We don't want people to know that we simply aren't able to do something because of the pain. It makes us feel weak. Because we should be stronger. We should be able to handle it. And most of us have people who don't understand telling us all the time that we should be able to do things we can't do, and so that shame is reinforced. We either find other excuses ("I didn't really want to go out today anyway, I'm not in the mood") or we grit our teeth and do it, knowing we'll pay the price later (which will, of course, be our own fault).
Chronic pain has a life of its own, and it affects every aspect of the life of the sufferer. People who suffer from chronic pain are more likely to also suffer from depression than non-chronic pain sufferers. Living your life in constant pain with little or no relief is one of the most discouraging and frustrating feelings imaginable. There will be times when you will want to give up. When you would do almost anything just to make the pain stop. There will be times when you will want to throw a temper tantrum that would put a two-year-old to shame. To scream and hit and throw things. You will cry tears of pain and tears of frustration and sometimes you won't know which is which.
The only thing I can ask of you is this: If you know someone who has chronic pain, let them know that they are not alone. Let them know that you understand their limitations and that you will be happy to work within them. Let them know that it is *not* their fault. Let them know that you understand that you can't fix it, but that you are willing to listen to their fears and their frustrations. Understand that their pain is like an unwanted tagalong that will always have to be factored into any plans. Let them know that you understand this and that you don't mind. Let them know that they never have to justify either their good days or their bad days to you. Rejoice with them in the former and be there for them in the latter. They will appreciate it more than you can ever know.