A couple weeks ago my friend Tony & I were talking about pain and how it never goes away. About how we have to find ways to live around our pain & he decided to write a WONDERFULLY descriptive note about living with chronic pain. He has granted me permission to re-post it here to share with other people to give a very vivid description of how chronic pain affects one's daily life. So here's what Tony wrote:
Living with Chronic Pain: A view from the inside
I thought long and hard about even writing this. There are so many people who could do this topic much better justice than I probably will. However, it is my hope, that a glimpse at life from the inside will help those of you who do not have to deal with this, understand those that do just a little better.
For those who don't know, my journey into dealing with chronic pain started with a "routine surgery" completely unrelated to the chronic back pain I now live with. The doctor wasn't even going to do do a full anesthesia but I insisted, and I am glad that I did. It turned out to be anything but routine. I woke up the next day numb from my hips to my ankles, and have been ever since.
I immediately started trying to deal with it as an acute problem. I figured it was a minor thing, that a little Chiropractic and massage therapy would fix, but that was not the case. After a month of almost daily treatments, my Chiropractor told me that something was wrong and I needed to go see my MD. I went to several doctors over the next few months to figure out what was wrong and what my options were. I found out that I have a bulging disk which is pinching the nerve at the point where it splits to go down the sides of my legs, hence the dual numbness. I tried physical therapy, until the Physical Therapist told me that I was in too much pain to continue. I tried water exercise, but the water was too cold and caused my back to seize up worse. I kept up with chiropractic care and massage therapy (neuromuscular therapy to be precise, which unlike the massage you get at the spa, is very deep, and often very painful). I used a series of medications until I found an herbal medicine that would work just as well, which I used until I was on the mend, and didn't need it anymore.I changed my chair at work so I would be more comfortable and not in so much pain at work or after. I went and got a new mattress that was easier on my back. I tried about everything I could think of.
About two and a half years later, after being in relatively minimal pain and feeling pretty good for a while, including my trips at Christmas, attending the rose parade with family, and flying, and staying in various hotels all without incident, I decided to go back to work with a trainer to strengthen my core muscles and back so that I could go back to the gym and begin getting back in shape. I was excited about finally being able to go back and get on what I considered the road to recovery once and for all. The trainer had the best credentials of anyone I had talked to before, and his team of 3 seemed to be just what I needed.
Those of you who saw my status a couple weeks ago know that I had to stop training (again) due to being in pain (again), and how absolutely devastating it was to suffer another setback. One of the 3 trainers had me do an execise I wasn't ready for, and in 45 minutes, 2.5 years of healing was down the tubes, and I was back to struggling with day to day pain.
So what does a day look like and why is it so hard dealing with low grade chronic pain? Well the short version is that it takes effort to do everything. Things that you used to take for granted are now carefully thought out and orchestrated. It is tiring, some days even exhausting, to just get through a day. Not because the muscles are any weaker than they used to be, or because you did such enormous work that day, or because the pain is so sharp that you can't move, or that the muscles don't work at all, it is tiring because it is. As a matter of fact, in theory, there is little that a person in chronic pain cannot do that they did before they started having these issues. The only thing that is different than when I wasn't in chronic pain, is that now there is a cost associated with everything. Every movement, every motion, every action takes a toll. In other words, I can do it, but I might regret it later. So I have to weigh whether it is worth it to do something, instead of just if I want to do it.
To see what this looks like, lets start with the basics. Every single day that I went to sleep the night before, like most people, I get up and get out of bed, 5 of those days it is to go to work. This is a simple act that most people take for granted. When you are in chronic pain, this is not the case. From the time that I wake up, until the time that I get out of bed is several minutes, not because I hit the snooze bar, but because I can't just roll out of bed, jump up, and hit the ground running like I used to. Every single motion is planned and orchestrated. Roll to my side (which in and of itself is not as simple as it might sound, and is significantly more painful some mornings than it should be), pivot my legs down over the edge of the ebd, and slowly let gravity pull me upright. Push off the bed with both hands to get my feet on the ground, and grab the doorframe of the master bath to right myself so I can stand completely upright. Now that I am up, I need to go downstairs. This is a slow measured process so that I don't fall, and I don't pull the railing out of the wall supporting myself. Sometimes I walk, sometimes I limp, sometimes it is easier than others.
Getting a shower, getting dressed, and getting to work takes a similar amount of effort. Putting on shoes and socks is not something that has been this hard since before I knew how to tie my own shoelaces. Getting into the car to go to work, and out of the car at work also takes enormous effort, sometimes more than others. On the worst days, I am pulling myself out by using the doorframe of the car for leverage.
Once at work, I have a pretty typical day. I sit at my desk and do my job, pushing myself in and out of my chair about once an hour to walk around. If I don't get up that often, getting up later gets harder.
After a normal day's work, there are errands to run. Even the simple tasks take more effort. Lets take Grocery Shopping. There are decisions to be made. Do I feel well enough to get all of the stuff on my list? Can I carry it all back to my apartment if I do? Should I grab just a few tide-me-over items and then try again another day? Do I skip the items I can't lift or ask for help? Can I handle bending down to get something off the bottom shelf? Do I grab an alternative that is up at eye level so I don't have to bend? Can I get a gallon of water off the top shelf, or do I use a substitute that is closer to eye level.
Once I get home, there are more decisions to make. Do I carry more in each trip and make fewer trips? Or make more trips and carry less each time? Which items have to get into the house (frozen/fridge stuff) and which can wait. Can I stand up long enough to cook a real dinner, or do I grab a tv dinner or sandwich because I am too exhausted to cook after I get everything in and put away .
And then there is travel. I am fortunate in that I am able to travel fairly easily as long as I stop frequently to stretch and walk around. This makes trips take about 25 percent longer than they should. If you think about it, stopping 4 times for 15 minutes adds an hour to the trip.The longer the trip, the more you have to stop, and the more time that gets added. If you are unlucky enough to get stuck for a couple hours in a traffic jam, or hit a relatively sparse stretch of interstate (Are you listening VADOT?) when you do get to a stopping point, you have to stop longer and it gets harder.
All of this makes life exhausting: mentally, physically, and emotionally, because it doesn't end. It doesn't go away. It can be made better sometimes. It can be helped with medication and various treatments, but you have to constantly figure out which treatments and which meds are working, and which you need to change. You make decisions as to whether you just live with it today, or you take the meds and deal with the side effects. Which is worse, the pain I am in, or the nausea and fatigue that comes from taking the meds. The other problem with the meds is that they do turn off the body's feeback mechanism. You have to be careful when you are out of pain due to meds, that you don't do anything that will make things worse because you can't feel it. It gets worse with the changing seasons, changing weather, or change in activity. There is no such thing as a break. If you have a good day, then you have to decide whether to use it to try to do things (and risk a bad day later because of it), or whether to try and enjoy it as a complete break, and get further behind on everything else which will have to be caught up later. Usually for me it is somewhere in between.
There is no such thing as a respite. Only varying degrees of severity.
And then there is the emotional side of the equation. If you discount all the chemical and physiological effects of pain on your mind and body, you still have an emotional side of the equation to deal with. When you struggle to get into and out of a chair, it is hard to consider yourself not a failure, a cripple, or just plain useless. When you have to ask someone, sometimes someone older than you, to get something off a shelf at the grocery store, or to carry your groceries to your car, it hurts emotionally. Sometimes you try to explain (I have a back injiury), sometimes you apologize (I'm sorry, but could you grab that jar of mayonaise off the bottom shelf for me? I have a back problem and can't bend), sometimes you give up (I'll just live without it), but you always get "the look".
You know the look. It is the same look that you give someone who gets out of a car in a handicapped spot and looks just fine to you. It is the look that you give the person who parks in the "expectant mothers" parking who doesn't look like she is pregnant. Yes, it is that look. It comes from the teenaged cashier and the person in front of you or behind you in line when you ask the bagger to unload your cart. It comes from the mother in the parking lot who just got out of the car with her kids in tow and sees the bagger who is older than you by more than a decade packing your car. Yes, it is there. And yes, we do notice when you to act like you didn't notice and didn't give us "the look".
And when your friends ask you what's wrong (or in my case, why are you limping?), or try to help you because they can see you are struggling and they want to help, it is a great feeling to know they care. But it hurts like heck to think that you have been reduced to that level. We all want to be self sufficient and don't want to have to ask others for help. You find ways to hide it, you bite your lip when you move so that the groan won't escape, and you fight like you've never fought before not to wince or cry until you reach the safety of your car. You try to sit by people who don't know you so they nobody sees you pushing yourself in and out of the chair by using the back of the chair in front of you as a support.
And then, just when you feel like it can't get any worse, you read the story in the news about the three guys with 1 natural leg between them who climbed Everest, or the double amputee who runs in the Boston Marathon, or any number of other heartwarming stories of courage and perseverance, you sit down and bawl, wondering how the heck they can do that, and you can't even seem to manage getting a full day's work done without feeling like you want to crawl under the covers and die.
You find things you enjoy that you can still do, and make plans to do them. Careful plans. Plans with backups and backouts in case something goes wrong. You find tricks to help you. For example, those of you who have been with me at Fusion at night lately have noticed I am seldom without a flashlight, and many have wondered why I would carry a flashlight in my pocket. I carry it for one simple reason. If I put my foot down wrong, trip, stumble or fall, it isn't an embarrassing inconvenience that I can just shake off. It is a serious problem that I will be dealing with for a day or two if I am lucky, longer if I am not.
Through all this, you try to keep a good face on. When you get to your lowest of lows, you get determined to fight back and push through and conquer this obstacle. Except it isn't an obstacle that is ever fully conquered. It is a race that is run one step at a time, one day at a time, one week, month, or year at a time. It is a race that it is run without knowing where or when the finish line is. It is a race that you didn't enter, and that you can not win. But it is a race that you have no choice but to run because you haven't been given a choice in the matter. You didn't ask for this. You didn't do anything wrong, silly or stupid. You simply were at the wrong place at the wrong time, lucky enough to be the one in a million (but not lucky enough that it would happen when you pick numbers for the lottery), or a victim of your own life, genetics or family history.
So the next time you see one of us, one of us who tries to suffer quietly, but has reached the end of their rope, don't ask us what's wrong of if we need help. Offer us a hand to pull ourselves up, a shoulder to cry on, or a prayer for a better tomorrow. It will be greatly appreciated.
For those who don't know, my journey into dealing with chronic pain started with a "routine surgery" completely unrelated to the chronic back pain I now live with. The doctor wasn't even going to do do a full anesthesia but I insisted, and I am glad that I did. It turned out to be anything but routine. I woke up the next day numb from my hips to my ankles, and have been ever since.
I immediately started trying to deal with it as an acute problem. I figured it was a minor thing, that a little Chiropractic and massage therapy would fix, but that was not the case. After a month of almost daily treatments, my Chiropractor told me that something was wrong and I needed to go see my MD. I went to several doctors over the next few months to figure out what was wrong and what my options were. I found out that I have a bulging disk which is pinching the nerve at the point where it splits to go down the sides of my legs, hence the dual numbness. I tried physical therapy, until the Physical Therapist told me that I was in too much pain to continue. I tried water exercise, but the water was too cold and caused my back to seize up worse. I kept up with chiropractic care and massage therapy (neuromuscular therapy to be precise, which unlike the massage you get at the spa, is very deep, and often very painful). I used a series of medications until I found an herbal medicine that would work just as well, which I used until I was on the mend, and didn't need it anymore.I changed my chair at work so I would be more comfortable and not in so much pain at work or after. I went and got a new mattress that was easier on my back. I tried about everything I could think of.
About two and a half years later, after being in relatively minimal pain and feeling pretty good for a while, including my trips at Christmas, attending the rose parade with family, and flying, and staying in various hotels all without incident, I decided to go back to work with a trainer to strengthen my core muscles and back so that I could go back to the gym and begin getting back in shape. I was excited about finally being able to go back and get on what I considered the road to recovery once and for all. The trainer had the best credentials of anyone I had talked to before, and his team of 3 seemed to be just what I needed.
Those of you who saw my status a couple weeks ago know that I had to stop training (again) due to being in pain (again), and how absolutely devastating it was to suffer another setback. One of the 3 trainers had me do an execise I wasn't ready for, and in 45 minutes, 2.5 years of healing was down the tubes, and I was back to struggling with day to day pain.
So what does a day look like and why is it so hard dealing with low grade chronic pain? Well the short version is that it takes effort to do everything. Things that you used to take for granted are now carefully thought out and orchestrated. It is tiring, some days even exhausting, to just get through a day. Not because the muscles are any weaker than they used to be, or because you did such enormous work that day, or because the pain is so sharp that you can't move, or that the muscles don't work at all, it is tiring because it is. As a matter of fact, in theory, there is little that a person in chronic pain cannot do that they did before they started having these issues. The only thing that is different than when I wasn't in chronic pain, is that now there is a cost associated with everything. Every movement, every motion, every action takes a toll. In other words, I can do it, but I might regret it later. So I have to weigh whether it is worth it to do something, instead of just if I want to do it.
To see what this looks like, lets start with the basics. Every single day that I went to sleep the night before, like most people, I get up and get out of bed, 5 of those days it is to go to work. This is a simple act that most people take for granted. When you are in chronic pain, this is not the case. From the time that I wake up, until the time that I get out of bed is several minutes, not because I hit the snooze bar, but because I can't just roll out of bed, jump up, and hit the ground running like I used to. Every single motion is planned and orchestrated. Roll to my side (which in and of itself is not as simple as it might sound, and is significantly more painful some mornings than it should be), pivot my legs down over the edge of the ebd, and slowly let gravity pull me upright. Push off the bed with both hands to get my feet on the ground, and grab the doorframe of the master bath to right myself so I can stand completely upright. Now that I am up, I need to go downstairs. This is a slow measured process so that I don't fall, and I don't pull the railing out of the wall supporting myself. Sometimes I walk, sometimes I limp, sometimes it is easier than others.
Getting a shower, getting dressed, and getting to work takes a similar amount of effort. Putting on shoes and socks is not something that has been this hard since before I knew how to tie my own shoelaces. Getting into the car to go to work, and out of the car at work also takes enormous effort, sometimes more than others. On the worst days, I am pulling myself out by using the doorframe of the car for leverage.
Once at work, I have a pretty typical day. I sit at my desk and do my job, pushing myself in and out of my chair about once an hour to walk around. If I don't get up that often, getting up later gets harder.
After a normal day's work, there are errands to run. Even the simple tasks take more effort. Lets take Grocery Shopping. There are decisions to be made. Do I feel well enough to get all of the stuff on my list? Can I carry it all back to my apartment if I do? Should I grab just a few tide-me-over items and then try again another day? Do I skip the items I can't lift or ask for help? Can I handle bending down to get something off the bottom shelf? Do I grab an alternative that is up at eye level so I don't have to bend? Can I get a gallon of water off the top shelf, or do I use a substitute that is closer to eye level.
Once I get home, there are more decisions to make. Do I carry more in each trip and make fewer trips? Or make more trips and carry less each time? Which items have to get into the house (frozen/fridge stuff) and which can wait. Can I stand up long enough to cook a real dinner, or do I grab a tv dinner or sandwich because I am too exhausted to cook after I get everything in and put away .
And then there is travel. I am fortunate in that I am able to travel fairly easily as long as I stop frequently to stretch and walk around. This makes trips take about 25 percent longer than they should. If you think about it, stopping 4 times for 15 minutes adds an hour to the trip.The longer the trip, the more you have to stop, and the more time that gets added. If you are unlucky enough to get stuck for a couple hours in a traffic jam, or hit a relatively sparse stretch of interstate (Are you listening VADOT?) when you do get to a stopping point, you have to stop longer and it gets harder.
All of this makes life exhausting: mentally, physically, and emotionally, because it doesn't end. It doesn't go away. It can be made better sometimes. It can be helped with medication and various treatments, but you have to constantly figure out which treatments and which meds are working, and which you need to change. You make decisions as to whether you just live with it today, or you take the meds and deal with the side effects. Which is worse, the pain I am in, or the nausea and fatigue that comes from taking the meds. The other problem with the meds is that they do turn off the body's feeback mechanism. You have to be careful when you are out of pain due to meds, that you don't do anything that will make things worse because you can't feel it. It gets worse with the changing seasons, changing weather, or change in activity. There is no such thing as a break. If you have a good day, then you have to decide whether to use it to try to do things (and risk a bad day later because of it), or whether to try and enjoy it as a complete break, and get further behind on everything else which will have to be caught up later. Usually for me it is somewhere in between.
There is no such thing as a respite. Only varying degrees of severity.
And then there is the emotional side of the equation. If you discount all the chemical and physiological effects of pain on your mind and body, you still have an emotional side of the equation to deal with. When you struggle to get into and out of a chair, it is hard to consider yourself not a failure, a cripple, or just plain useless. When you have to ask someone, sometimes someone older than you, to get something off a shelf at the grocery store, or to carry your groceries to your car, it hurts emotionally. Sometimes you try to explain (I have a back injiury), sometimes you apologize (I'm sorry, but could you grab that jar of mayonaise off the bottom shelf for me? I have a back problem and can't bend), sometimes you give up (I'll just live without it), but you always get "the look".
You know the look. It is the same look that you give someone who gets out of a car in a handicapped spot and looks just fine to you. It is the look that you give the person who parks in the "expectant mothers" parking who doesn't look like she is pregnant. Yes, it is that look. It comes from the teenaged cashier and the person in front of you or behind you in line when you ask the bagger to unload your cart. It comes from the mother in the parking lot who just got out of the car with her kids in tow and sees the bagger who is older than you by more than a decade packing your car. Yes, it is there. And yes, we do notice when you to act like you didn't notice and didn't give us "the look".
And when your friends ask you what's wrong (or in my case, why are you limping?), or try to help you because they can see you are struggling and they want to help, it is a great feeling to know they care. But it hurts like heck to think that you have been reduced to that level. We all want to be self sufficient and don't want to have to ask others for help. You find ways to hide it, you bite your lip when you move so that the groan won't escape, and you fight like you've never fought before not to wince or cry until you reach the safety of your car. You try to sit by people who don't know you so they nobody sees you pushing yourself in and out of the chair by using the back of the chair in front of you as a support.
And then, just when you feel like it can't get any worse, you read the story in the news about the three guys with 1 natural leg between them who climbed Everest, or the double amputee who runs in the Boston Marathon, or any number of other heartwarming stories of courage and perseverance, you sit down and bawl, wondering how the heck they can do that, and you can't even seem to manage getting a full day's work done without feeling like you want to crawl under the covers and die.
You find things you enjoy that you can still do, and make plans to do them. Careful plans. Plans with backups and backouts in case something goes wrong. You find tricks to help you. For example, those of you who have been with me at Fusion at night lately have noticed I am seldom without a flashlight, and many have wondered why I would carry a flashlight in my pocket. I carry it for one simple reason. If I put my foot down wrong, trip, stumble or fall, it isn't an embarrassing inconvenience that I can just shake off. It is a serious problem that I will be dealing with for a day or two if I am lucky, longer if I am not.
Through all this, you try to keep a good face on. When you get to your lowest of lows, you get determined to fight back and push through and conquer this obstacle. Except it isn't an obstacle that is ever fully conquered. It is a race that is run one step at a time, one day at a time, one week, month, or year at a time. It is a race that it is run without knowing where or when the finish line is. It is a race that you didn't enter, and that you can not win. But it is a race that you have no choice but to run because you haven't been given a choice in the matter. You didn't ask for this. You didn't do anything wrong, silly or stupid. You simply were at the wrong place at the wrong time, lucky enough to be the one in a million (but not lucky enough that it would happen when you pick numbers for the lottery), or a victim of your own life, genetics or family history.
So the next time you see one of us, one of us who tries to suffer quietly, but has reached the end of their rope, don't ask us what's wrong of if we need help. Offer us a hand to pull ourselves up, a shoulder to cry on, or a prayer for a better tomorrow. It will be greatly appreciated.
No comments:
Post a Comment