If it’s possible to say that a person can be on good terms with pain, then that’s what I was on the years leading up to my hysterectomy. Despite being reasonably pain free since having the hyst, I will never EVER forget what that pain felt like. It’s not only emblazoned in my brain, but still emblazoned in the muscle and nerve memory of my pelvis, abdomen, lower back and upper thighs. Even thinking about brings back ghosts of what it felt like.
Pelvic pain became such a big feature in my life that I don’t even remember when it moved from being “just period pain” into being chronic pelvic pain. I do know that I first realised that the pain wasn’t just with my periods when I started keeping a pain and symptom diary in the hopes that it would help me be taken seriously by doctors. I remember looking back at it after a month of keeping it. What I wrote before and during my period and ovulation weren’t surprising, but the fact that I entered something in the diary every single day did surprise me.
Was I really in THAT much pain? Well, yes, clearly. Even if the daily pain was low grade and I could more or less ignore it most of the time, the reality was that I had a constant low grade pain in the same spot every single day. To some degree, it’s still there to this day.
There are many problems with pain as a symptom. Although it is your body’s way of telling you something is wrong, it can be equally non-descript and sometimes confusing. For example, when I had my periods, I often had horrible pains that radiated down the tops of my thighs, which I often described as feeling like someone had stuck a knife in them and dragged down the whole length of them. I found this pain harder to get on top of than the pelvic pain because no position (sitting, standing, lying down) was comfortable. The trouble was, there was nothing going on in my thighs. The pain was actually in my pelvis, it just radiated down those nerves, probably because there was just nowhere else for it to go.
One of the other problems with pain as a symptom is that the experience of pain is subjective. One person’s “pain” is another person’s “uncomfortable”. I’ve know people to say that they would grade the pain they were currently in as an “8" on a scale of 1 to 10 (1 being minimal, 10 being the worst pain you’ve ever experienced) while I then watched them walk out of the room. For me, the definition of an 8 includes not being able to physically move off the bed. Don’t ask what 10 is like. As I said, pain is subjective.
Pain also takes many forms. The pain and symptom diary that I kept at the time came with a handy graph of codes to log the “quality” of the pain. There were 56 different words to describe what the pain felt like. Until that point, I had never given that any consideration. Did the pain burn? Cramp? Was it cold? Was it hot? Prickly? Stabbing? Dragging? Gnawing? You get the picture. Pain in different parts of the body feels different. I don’t like needles, but I can handle them. That’s a different pain (sharp, pin prick = ow) to the chronic pelvic pain (deep, dragging, cramping, stabbing, gnawing, knife pain = fuck) or the pain I’ve had in my upper back more recently (tender, tight, sore, stiff = crap).
But regardless of all of this, the experience of chronic pain changes you. It’s difficult to quantify how, but it does. In discussing this concept yesterday with a friend, she pointed out the loss of identity that comes with the experience of pain. Pain can prevent you from doing the things you normally do (your job, your hobbies, hanging out with friends, anything), and over time, not being able to do what you normally would do becomes a loss of self. Before the hyst, I got into a habit of trying to cram everything in when I was having “good days” because I knew that “bad days” were just around the corner. I developed a mentality that said “you’d better do it now, because there will come a time in the future when you can’t do it at all”. I couldn’t (and still can’t) deal with that loss of self, so I would pack everything in, and probably didn’t help myself in the process.
I also became expert at hiding the amount of pain I was in. I could put the "happy face” and could stubbornly still go about my day working or whatever, making like everything was okay when I all I could really think about was when I could take my next dose of co-codomol and the date I had set with my bed and two very hot wheat bags. I remember when one of my good friends “outed” herself as a fellow “endo woman” at work one day. “You have that look, it’s in the eyes. The face says happy; the eyes say pain. I’m wearing that face too,” she said with a big smile. I wore that mask in public consistently for almost 20 years. It was only in the last year or so before the hyst (bar the occasional slip before that) that the pain was so intense that I couldn’t hide it so easily anymore.
Pain changes your relationship with your body. If anything positive came from the experience of chronic pain, it was that I learned to “tune in” to my body. But it also meant that I stopped trusting it. It betrayed me often. It’s still betraying me.
Pain changes your emotional world as well. When you have good days, you live with the constant anxiety of the bad days to follow. You worry that you will have a bad day when you need to be doing something really important. You always worry if this will be the time when you can’t carry on and the pain will overwhelm you. You worry whether or not you have enough pain medication to see you through. You worry that the medication will cloud your brain so much that you make that fatal error at work or driving your car. You worry that it will never ever end and that you will never see light at the end of the tunnel. Eventually, that pain and anxiety becomes self-doubt and self-loathing and turns into depression. Being in constant pain turned me into a moody, grumpy, self-loathing, anxiety-riddled bitch who wore a “happy face” mask. I never liked that woman. Still don’t.
Pain also changes other people around you. It’s very hard to watch somebody you love be in pain, because ultimately, there is very little you can do. I remember people telling me to get somebody to rub my back when the pain was bad. Frankly, that was the last thing in the world I wanted anyone to do. It set my nerves on fire and was anything but relaxing. The pain I was in was too deep for superficial touch. I just wanted to be left alone in bed having my own one woman pity party. The most compassionate thing anyone could do when I was in serious pain was to hand me painkillers and a glass of water (or alcohol) and warm up my wheat bag in the microwave and leave me be. My misery doesn’t love company. The only other thing they could do was listen to me when I wanted to talk about it.
Loving someone who is in pain leaves you feeling helpless. And frankly, the look of helplessness on other people’s faces when I was in pain just made me feel guilty for making them feel like that. And when you feel helpless, it erodes your self-esteem, meaning that all of that anxiety, depression and self-loathing you experience as a result of pain spills over to those around you who also experience anxiety, depression and self-loathing because they feel helpless that there is almost nothing they can do. I’ve been on both sides of this and can honestly say that it’s a shitty cycle to be in.
I keep being asked if I’m in pain with the Crohn’s. Comparatively, no. It hasn’t even begun to touch the pain I used to be in. Uncomfortable, yes. Painful? Not really. The trapped wind can be really painful, but I know that will pass once I can get it out. I’ve had a few paracetomol here and there, and I’m on good terms with my wheat bag, but at no time have I been wanting to raid my stash of (probably now expired) co-codomol. Truthfully, the pain section in the current food and symptom diary I’m keeping is full of references to the back pain I’ve been having rather than anything in my guts.
But the ghosts of my previous experience with pain are still there. A lot of the anxiety I’ve been having is steroid induced, but some of it isn’t. I still cram too much into my good days and fear the bad. I am struggling with the loss of identity of being off work and not being able do things I normally do. I still wear that “mask” in front of other people. And I still feel guilty for making people around me feel helpless.
Was I really in THAT much pain? Well, yes, clearly. Even if the daily pain was low grade and I could more or less ignore it most of the time, the reality was that I had a constant low grade pain in the same spot every single day. To some degree, it’s still there to this day.
There are many problems with pain as a symptom. Although it is your body’s way of telling you something is wrong, it can be equally non-descript and sometimes confusing. For example, when I had my periods, I often had horrible pains that radiated down the tops of my thighs, which I often described as feeling like someone had stuck a knife in them and dragged down the whole length of them. I found this pain harder to get on top of than the pelvic pain because no position (sitting, standing, lying down) was comfortable. The trouble was, there was nothing going on in my thighs. The pain was actually in my pelvis, it just radiated down those nerves, probably because there was just nowhere else for it to go.
One of the other problems with pain as a symptom is that the experience of pain is subjective. One person’s “pain” is another person’s “uncomfortable”. I’ve know people to say that they would grade the pain they were currently in as an “8" on a scale of 1 to 10 (1 being minimal, 10 being the worst pain you’ve ever experienced) while I then watched them walk out of the room. For me, the definition of an 8 includes not being able to physically move off the bed. Don’t ask what 10 is like. As I said, pain is subjective.
But regardless of all of this, the experience of chronic pain changes you. It’s difficult to quantify how, but it does. In discussing this concept yesterday with a friend, she pointed out the loss of identity that comes with the experience of pain. Pain can prevent you from doing the things you normally do (your job, your hobbies, hanging out with friends, anything), and over time, not being able to do what you normally would do becomes a loss of self. Before the hyst, I got into a habit of trying to cram everything in when I was having “good days” because I knew that “bad days” were just around the corner. I developed a mentality that said “you’d better do it now, because there will come a time in the future when you can’t do it at all”. I couldn’t (and still can’t) deal with that loss of self, so I would pack everything in, and probably didn’t help myself in the process.
I also became expert at hiding the amount of pain I was in. I could put the "happy face” and could stubbornly still go about my day working or whatever, making like everything was okay when I all I could really think about was when I could take my next dose of co-codomol and the date I had set with my bed and two very hot wheat bags. I remember when one of my good friends “outed” herself as a fellow “endo woman” at work one day. “You have that look, it’s in the eyes. The face says happy; the eyes say pain. I’m wearing that face too,” she said with a big smile. I wore that mask in public consistently for almost 20 years. It was only in the last year or so before the hyst (bar the occasional slip before that) that the pain was so intense that I couldn’t hide it so easily anymore.
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| Pain? What pain? I'm wearing my happy face!! Happy, Happy, Happy! Bloody hell, hand me my painkillers!!!! |
Pain changes your relationship with your body. If anything positive came from the experience of chronic pain, it was that I learned to “tune in” to my body. But it also meant that I stopped trusting it. It betrayed me often. It’s still betraying me.
Pain changes your emotional world as well. When you have good days, you live with the constant anxiety of the bad days to follow. You worry that you will have a bad day when you need to be doing something really important. You always worry if this will be the time when you can’t carry on and the pain will overwhelm you. You worry whether or not you have enough pain medication to see you through. You worry that the medication will cloud your brain so much that you make that fatal error at work or driving your car. You worry that it will never ever end and that you will never see light at the end of the tunnel. Eventually, that pain and anxiety becomes self-doubt and self-loathing and turns into depression. Being in constant pain turned me into a moody, grumpy, self-loathing, anxiety-riddled bitch who wore a “happy face” mask. I never liked that woman. Still don’t.
Pain also changes other people around you. It’s very hard to watch somebody you love be in pain, because ultimately, there is very little you can do. I remember people telling me to get somebody to rub my back when the pain was bad. Frankly, that was the last thing in the world I wanted anyone to do. It set my nerves on fire and was anything but relaxing. The pain I was in was too deep for superficial touch. I just wanted to be left alone in bed having my own one woman pity party. The most compassionate thing anyone could do when I was in serious pain was to hand me painkillers and a glass of water (or alcohol) and warm up my wheat bag in the microwave and leave me be. My misery doesn’t love company. The only other thing they could do was listen to me when I wanted to talk about it.
Loving someone who is in pain leaves you feeling helpless. And frankly, the look of helplessness on other people’s faces when I was in pain just made me feel guilty for making them feel like that. And when you feel helpless, it erodes your self-esteem, meaning that all of that anxiety, depression and self-loathing you experience as a result of pain spills over to those around you who also experience anxiety, depression and self-loathing because they feel helpless that there is almost nothing they can do. I’ve been on both sides of this and can honestly say that it’s a shitty cycle to be in.
I keep being asked if I’m in pain with the Crohn’s. Comparatively, no. It hasn’t even begun to touch the pain I used to be in. Uncomfortable, yes. Painful? Not really. The trapped wind can be really painful, but I know that will pass once I can get it out. I’ve had a few paracetomol here and there, and I’m on good terms with my wheat bag, but at no time have I been wanting to raid my stash of (probably now expired) co-codomol. Truthfully, the pain section in the current food and symptom diary I’m keeping is full of references to the back pain I’ve been having rather than anything in my guts.
But the ghosts of my previous experience with pain are still there. A lot of the anxiety I’ve been having is steroid induced, but some of it isn’t. I still cram too much into my good days and fear the bad. I am struggling with the loss of identity of being off work and not being able do things I normally do. I still wear that “mask” in front of other people. And I still feel guilty for making people around me feel helpless.
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