This topic has been flitting around in my head for months. I haven’t written about it because it feels too much like whining. Not that I’ve never written about pain – I have. I just don’t think I’ve vented quite this directly about it. At any rate, I’m not asking for pity. My friend Pug thinks that it might be cathartic and perhaps he’s right.
It’s just that pain is so very frustrating on so many levels. One major frustration is that doctors just don’t take it seriously. Would they take it more seriously if I was in and out of the office, constantly complaining? Maybe. But I’m not interested in more drugs anyway and that seems to be their only answer.
Doctors are always wanting me to rate my pain on a scale of one to ten, one being no pain at all and ten being the worst pain I can imagine. As if pain can be so easily quantified. The scale is too vague for me and the leap from nine to ten is just way, way too big. For one thing, I can imagine a lot of pain.
When I fell, the moment sort of froze. One moment I was falling and I realized what was happening, then there was a bright light and screaming, then I was on the ground. I called that “falling into the light” and it was repeated a number of times those first few days. I could hear the screaming for months afterward. So is that a ten?
I used to say it was a twenty-seven when asked to rate my pain in the hospital. And that was really below falling into the light level. My friend Johnna had a below knee amputation at about the same time. She rated her pain a 600 during dressing changes. Is that a ten?
When is pain unbearable? Is it only when it’s so bad you lose consciousness? Does the fact that I do bear it, I keep making it through, by definition mean it’s not unbearable?
Imagine a sharp rock stuck in your shoe. It’s really a fairly small pain on the great pain scale of life. But what if you can never remove the rock? What if it’s there every step you take. What if it hurts even when you’re just sitting there and you know it’ll get worse if you stand and walk. What if you have no choice but to deal with it. Maybe the rock is bigger than a pebble. Maybe it never, ever goes away. For me, that’s the unbearable part.
There’s a huge, almost unimaginable difference between the kind of pain that I had previously experienced and the kind of pain that is there 24 hours per day. Even very bad pain, if it lasts a matter of days or even weeks, is preferable to me than more moderate pain that simply never goes away. Everything in my life revolves around the pain in some way or another.
Sleep is such a huge part of this. That rock in your shoe? It becomes that huge rock in your bed. No matter what position I try, no matter the drugs, the creams, the heat, or whatever else I think to try, the pain doesn’t go away and I only sleep when I am too exhausted to stay awake any longer. Lately, I only sleep for an hour or two at a time. That’s why I’m up and writing this at 4:00 in the morning. Pain trumps the sleep meds, by the way, so that they are pretty much pointless.
Maybe there is nothing the doctors can do for either the pain or the sleep problems. It feels like there should be something they can do. Maybe that’s just wishful thinking. I don’t, very often, feel that sorry for myself. I know many people deal with far worse than a little pain and insomnia. I accept that I am going to have pain and that pain is going to make certain things difficult.
It’s just that I’m so damn tired.
11 Comments
Zazzy, sometimes I worry that my comments and questions are accidentally insensitive or just plain stupid, but is the pain coming from your injured leg or is there other pain as well? My sister lived with chronic, extreme pain – peripheal neuropathy – among other miseries (such as a bad marriage). She was my dearly loved little sister and I could not help her. Please feel free to say “It hurts!” Just saying it might release a tiny bit of it.
Hi Hannah! Don’t worry about that, I don’t mind answering questions. Remember that I write from my own perspective and knowledge and have glaring blind spots about what others may not understand or know.
The pain is pretty much everywhere these days, but that’s not a useful generalization. I have arthritis in my back and joints in addition to the right knee injury and the left knee deterioration. I injured my right shoulder and the ortho guesses I may have some neck issues causing shoulder and arm pain. The worst of the pain that keeps me awake is in my hip and lower back – possibly I’ve caused damage to my hip because of the crooked way I walk. I probably won’t know until I’m ready to face the reconstruction surgery.
Sometimes saying “It hurts” is helpful and sometimes, it just reminds me that much of this is my own fault. Carrying the excess weight for so long has undoubtedly caused a lot of the joint damage. One doctor told me outright that if I hadn’t been so overweight that the fall might not have damaged my knee and leg as much as it did.
Wow. I knre there was something with the shoulder or arm. For some reason when you mention pain-induced insomnia, I thought of the back. No idea why, unless maybe you mentioned it here.
“One doctor told me outright that if I hadn’t been so overweight that the fall might not have damaged my knee and leg as much as it did.”
Zazzy, that one doctor might have done you almost as much emotional injury as the fall caused physically! It was an accident and, do you know what I think? The extra bit of insulation just might have saved you from shattering several more bones when you landed on that frozen ground. It could have been even worse if you had been thin at the time. Being thinner would not allow you to defy the laws of physics – certainly not when ice is involved! Another example of doctor blaming patient. I reject his speculation. Do not accept blame for that, Zazzy. Not for one bit of it.
Maybe you’re right, Hannah. Even if my weight made it worse, it was still an accident. I’ve second guessed that morning enough times.
I agree with Hannah!! I’ve had many doctors say very insensitive things about my weight, that when I look back on it, know it could not be true! (Hence the comics referring to the doctor getting his information from blogs.) I don’t know what happened with your fall but I do know that when I have worked in nursing homes in the past we wanted our patients there to be about 10-20 lbs overweight for the cushioning in case they did fall. The worst injuries often involved 90 lb 90 year olds. ;)
I relate to your post so much today in so many aspects. I have a terrible time getting to sleep, and then an even harder time waking. It gets to the point that it becomes absolutely painful and then incredibly frustrating when I have to go to sleep at night and can’t even though I’m tired.
I’m glad others feel the same way I do about the pain rating scale. Wouldn’t it just make more sense to describe the pain? The 10 I felt when I was ill in the hospital involved morphine. I’ve never been that hurt before or since. But that still doesn’t mean constant,nagging pain (epecially head and back) isn’t unbearable.
When you feel like whining, please call me. I think I’ve expressed to you before that I have come to recognize the good effects of an occasional whine. It can make you feel better on so many levels. I’m another non-fan of the 1-10 scale. I can bear a lot – that doesn’t mean I wouldn’t rather have something to take the edge off. And what’s a 10 for me today may have only been a 5 yesterday – a lot of it depends on how strong I’m feeling otherwise. My gastro is very concerned about pain. He doesn’t want a bunch of addicts for patients, but he doesn’t want them in unnecessary pain, either. I LOVE HIM! Early in our relationship he told me that most of his pancreatitis patients find it helpful to have some pain meds on hand, and he has been very good about letting me have what I need for over 17 years now. He once explained to me that the more you hurt, the more you hurt. Your nerves become worn like a carpet with constant traffic and so react more quickly and strongly to the same stimulus. I’ve always thought you very brave.
ManDee, my knee folded backwards then I fell forward on to it. There’s a certain amount of rationalization to say that if I hadn’t been so heavy I might not have damaged it so much – though I’m not sure that even very fit people would benefit from that kind of a knee movement. One of my nurses told me that a football player had actually died from the same injury – but I can’t find any information on that. If it ever happened, I’d guess that he tore his popliteal artery (like me) and it wasn’t discovered in time.
Wanting very badly to go to sleep and not being able to do so is one of the most frustrating things I currently deal with. Eve posted THIS the other day and while the author has far more to deal with than I do, I can relate to what she’s saying. Pain and not sleeping mean I can’t plan my days. I don’t know from day to day how much pain I’m going to be in or if I will get enough sleep to not be a danger on the roads. It’s frustrating, it’s demoralizing, but I don’t suppose it’s the worst thing in the world.
Hiya Eve! Your gastro sounds like a rare and very good doctor. I have to agree with the notion of the more you hurt, the more you hurt. One of the things I have learned is to never let the pain get out of control. If I don’t treat it when it’s getting bad, it will become unable to be treated (at least in a reasonable length of time). I don’t like to take the drugs during the day, especially if I’m out, and sometimes by evening it’s bad enough that the drugs just won’t touch it.
Brave? I love you, but I’m a big whiny chicken!
Such poetry in your writing, even of your pain. I can’t offer anything except hugs from afar. And the image of a soft warm blanket enfolding you in a way that eases every ache and lets you sleep your fill.
That is really lovely imagery, Tish. It sounds so relaxing…. zzzzz
You’re very right, pain is hard to quantify. And it is also something that many people don’t take seriously. Which SUCKS when you’re the one living with the pain! Why is it so hard to explain the pain in a way that sinks in for others?
I dunno Scott, maybe we can only relate to things through our own experiences. It’s like how diabetes doesn’t look that difficult from an outsiders perspective. Until you’ve lived with something you just don’t know what’s involved?
Hmmmm…now let’s consider how to help doctors understand pain better….