This is a post that I should have done a long time ago, but I have time right now (because o-chem drained my brain from all mental capacity for the day), what is like to have chronic pain when you are 19?
Well, first of all, it seems like nobody in the world understands what is like. My friends joke around that I am 'lucky' to have extra time on exams because of my condition, I would say that you are lucky you don't get extra time. People say things like "I would give anything to have an extra hour for this exam" or "I would trade anything to get an extension on that paper." Would you really if you knew what it was like? You can't truly understand unless you feel it or experience it yourself, and that is something I have learned along the way and come to accept.
I'm going to list the top ten ways in which chronic pain affects my life, this is the only way I know how to tell you what it is like to be me for day.
1. I'm exhausted all the time, and not because I stayed up too late or went out last night kind of exhaustion, but the kind that leaves you in a fog, that makes a pen feel like it weighs 10 lbs. So when people complain that they are tired because they stayed out until the wee hours of the morning or because the only left themselves 8 hours to complete an assignment, it makes me want to show them what it is like to never actually sleep. 3 hours, 4 if I am lucky is all the sleep I get. Imagine trying to sleep when it feels like you leg is being ripped open all the time.
2. I need time to be by myself. No matter how well you know somebody with chronic pain, they will put on a mask to make it seem like everything is okay and that you are just as normal as everybody else. Taking time to just be with myself means that I don't need to fake to the world that I am alright. Usually this time consists of riding my bike, or going for a walk or watching a TV show with a cup of tea. Just me and my thoughts, no school work, no people, no texting. If you ask me hang out and I say know it is probably a combination of number 1 and the fact I just don't want to have to be a fake.
3. This is a bit of an expansion on number 2, but since this whole pain thing started, I feel like I am faking to the world. You can't show weaknesses to the world because people will think you are unstable and emotional mess. Well, guess what, I am, all the time, but you don't know that because I hide it. If I didn't, you would probably never want to talk to me, or be around me. Who wants to hang out with a person who spontaneously breaks into to tears? If you knew what my leg feels like, you would be impressed that I am not constantly in tears. So if you see me and it looks like I might sort of be crying, or just was crying, its probably because I was/am.
4. Training and racing against people who don't have constant searing pain all the time is difficult. By the time they reach their pain threshold (or what they think is their pain threshold) they are experiencing a much lower level of pain that I was experiencing at the start line. You can only imagine then how much pain I am in by that point.
5. School is not the same for me as it is for somebody who is not in pain. I don't have ADD or ADHD, but I might as well have. I can't focus for more than 15 minutes because the pain is so intense that I need to take a step back from what I am doing and focus on shutting out the pain. So for every 15 minutes of productivity I have 5 minutes of non-productivity. You can imagine what it is like trying to write an exam or study, its physically exhausting after an hour let alone two hours.
6. Drugs. You would assume that I have an arsenal of drugs at my disposal and that if you pay me enough I will give you a shot of Ketamine. Wrong. I only take one drug at the moment and it is called Lamotragen, which was originally created to treat epilepsy. I take a very low dose because any higher and I get a rash that has some pretty serious consequences. That is it. This is also currently my problem. If I go to see a doctor while I am here at school who has no prior knowledge of my life and medical history and only has to go by what I tell them, they won't give me anything stronger that something like Tramacet. Tramacet is about the equivalent of Tylenol 3...not super effective. If I ask for drugs, people assume I am junky. It sucks.
7. Pain affects your relationships because it is not something that you can really control or that other people can really understand. Other than people with chronic pain or who have experienced chronic pain, nobody has the ability to understand what it is like to literally have never ending pain. IT DOESN'T EVER END. Not even when you are asleep. People try to understand this, but they can't, so they pull away from me because that is the only way they know how to cope with it. I would run away too, but the thing is, its really hard to run away from yourself.
8. My future is not predictable, not that anybody's really is, but I can't get the thought out of my mind that I will never be able to become a doctor no matter how hard I try because I will always be dealing with pain. If the surgery works, then great, but the prognosis is not about 50/50. Have you ever had that feeling that no matter how hard you study, you just can't get a good grade? That is the frustration that is my life.
9. It makes me doubt the existence of God. I believe in God, but I don't want to believe in one that does things like this to people. This feeling comes and goes for me, it is very dependent on what has happened in my day. (Discussed further in part 2.)
10. With all the pain, it has taught me a lot. It has taught me to appreciate the good moments and to understand that bad situations or circumstances usually aren't all that bad.
More to come with part 2, the positives.
Well, first of all, it seems like nobody in the world understands what is like. My friends joke around that I am 'lucky' to have extra time on exams because of my condition, I would say that you are lucky you don't get extra time. People say things like "I would give anything to have an extra hour for this exam" or "I would trade anything to get an extension on that paper." Would you really if you knew what it was like? You can't truly understand unless you feel it or experience it yourself, and that is something I have learned along the way and come to accept.
I'm going to list the top ten ways in which chronic pain affects my life, this is the only way I know how to tell you what it is like to be me for day.
1. I'm exhausted all the time, and not because I stayed up too late or went out last night kind of exhaustion, but the kind that leaves you in a fog, that makes a pen feel like it weighs 10 lbs. So when people complain that they are tired because they stayed out until the wee hours of the morning or because the only left themselves 8 hours to complete an assignment, it makes me want to show them what it is like to never actually sleep. 3 hours, 4 if I am lucky is all the sleep I get. Imagine trying to sleep when it feels like you leg is being ripped open all the time.
2. I need time to be by myself. No matter how well you know somebody with chronic pain, they will put on a mask to make it seem like everything is okay and that you are just as normal as everybody else. Taking time to just be with myself means that I don't need to fake to the world that I am alright. Usually this time consists of riding my bike, or going for a walk or watching a TV show with a cup of tea. Just me and my thoughts, no school work, no people, no texting. If you ask me hang out and I say know it is probably a combination of number 1 and the fact I just don't want to have to be a fake.
3. This is a bit of an expansion on number 2, but since this whole pain thing started, I feel like I am faking to the world. You can't show weaknesses to the world because people will think you are unstable and emotional mess. Well, guess what, I am, all the time, but you don't know that because I hide it. If I didn't, you would probably never want to talk to me, or be around me. Who wants to hang out with a person who spontaneously breaks into to tears? If you knew what my leg feels like, you would be impressed that I am not constantly in tears. So if you see me and it looks like I might sort of be crying, or just was crying, its probably because I was/am.
4. Training and racing against people who don't have constant searing pain all the time is difficult. By the time they reach their pain threshold (or what they think is their pain threshold) they are experiencing a much lower level of pain that I was experiencing at the start line. You can only imagine then how much pain I am in by that point.
5. School is not the same for me as it is for somebody who is not in pain. I don't have ADD or ADHD, but I might as well have. I can't focus for more than 15 minutes because the pain is so intense that I need to take a step back from what I am doing and focus on shutting out the pain. So for every 15 minutes of productivity I have 5 minutes of non-productivity. You can imagine what it is like trying to write an exam or study, its physically exhausting after an hour let alone two hours.
6. Drugs. You would assume that I have an arsenal of drugs at my disposal and that if you pay me enough I will give you a shot of Ketamine. Wrong. I only take one drug at the moment and it is called Lamotragen, which was originally created to treat epilepsy. I take a very low dose because any higher and I get a rash that has some pretty serious consequences. That is it. This is also currently my problem. If I go to see a doctor while I am here at school who has no prior knowledge of my life and medical history and only has to go by what I tell them, they won't give me anything stronger that something like Tramacet. Tramacet is about the equivalent of Tylenol 3...not super effective. If I ask for drugs, people assume I am junky. It sucks.
7. Pain affects your relationships because it is not something that you can really control or that other people can really understand. Other than people with chronic pain or who have experienced chronic pain, nobody has the ability to understand what it is like to literally have never ending pain. IT DOESN'T EVER END. Not even when you are asleep. People try to understand this, but they can't, so they pull away from me because that is the only way they know how to cope with it. I would run away too, but the thing is, its really hard to run away from yourself.
8. My future is not predictable, not that anybody's really is, but I can't get the thought out of my mind that I will never be able to become a doctor no matter how hard I try because I will always be dealing with pain. If the surgery works, then great, but the prognosis is not about 50/50. Have you ever had that feeling that no matter how hard you study, you just can't get a good grade? That is the frustration that is my life.
9. It makes me doubt the existence of God. I believe in God, but I don't want to believe in one that does things like this to people. This feeling comes and goes for me, it is very dependent on what has happened in my day. (Discussed further in part 2.)
10. With all the pain, it has taught me a lot. It has taught me to appreciate the good moments and to understand that bad situations or circumstances usually aren't all that bad.
More to come with part 2, the positives.
I can identify with this (except the bit about being 19). Items 1 - 7 in particular are daily issues for me as a mature university student and a bike racer with constant leg and back pain. Like you, I find that other people (who don't have chronic neuropathic pain) just don't get it. I'll be back to read part 2.
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