Invisible Pain
I have one of those infamous invisible illnesses; chronic, crippling migraines. I’ve had them all my life and, as I’ve gotten older, they’ve gotten less frequent but much, much worse. Despite the half-dozen pill bottles in my kitchen and the best efforts from everyone from my friends to physicians to therapists, I still end up in the hospital about four times a year.
Migraines are strange. When you’re having one, it looks like – and feels like – you’ve got some life-threatening, dangerous illness or injury. Mine come with severe projectile vomiting and shock so about half the time I look like I might be dying (and I’m certainly disgusting). And they’re absolutely agonizing; I’ve never, never been in as much pain as when I’m dealing with a migraine, plus it’s a level of agony that, if it were connected to an injury, would be severe enough to cause you to black out fairly soon. And yet, of all the illnesses and injuries available to people – migraines are the least harmful. They won’t kill you (except through suicide) and they won’t cripple you (except during the episode).
So, in a strange way, the agony I’m going through has no meaning. It’s not my body trying to tell me I’ve been clawed/shot/burned/broken … injured in some way. It’s some kind of microscopic problem somewhere in my skull; so microscopic that no one is really positive what causes migraines.
At the same time, migraines are so crippling that they reshape the rest of my life as well.
There’s no cure for migraines and no definitive treatment. I’ve gone through acupuncture, over the counter medications, prescription migraine medications like imitrex and maxalt to the fairly frequent use of serious pain-killers like vicoden and morphine. Sometimes one type of medication works, sometimes it doesn’t and – even after a lifetime – determining what will work for a particular event is mostly a matter of trial and error.
What that means is I often live in fear of triggering a migraine – especially since mine are often triggered by unexpected changes in my schedule. Miss a meal? Get a migraine. Go on vacation? Might get a migraine. Sleep late due to a late night romp in bed with the partner? Get a migraine. So, I’ve had years where I’ve refused to so much as go to a park without scheduling it days in advance (make sure I eat before I go, take my meds, make sure it’s not too sunny out). The thing is? I still got migraines.
No matter what I do, nor how much attention and effort I put into it, no matter how ‘good’ I am, there’s no way to eradicate them, no way to cure them and a limited way to control them. It’s worse, I think, because migraines are not a ‘real’ illness – for much of my life they were undiagnosed and even nowadays, no one is quite sure what they are and what to do about them. No matter how much they hurt me, I can’t put them in the same deadly class as diabetes, heart disease or disabilities like blindness, paralysis or brain injury.
I think there’s a classic psychological experiment where you give the subject random, uncontrollable punishments and they stop making any attempt to avoid the pain and kind of go crazy. It’s about the loss of any sense of control in your life and this is what the sort of migraines I have do to me.
Which, I guess, explains both why I am periodically non-compliant with my meds and also why I am so terribly inflexible to live with.
Over the years, I’ve become an old hand at what I – my particular situation – need, both in the long term and whenever I end up in the ER. It’s made me an expert on my medical needs in a way I see in very few other people – and made me kind of obnoxiously non-compliant in medical treatment unless I agree with the doctor’s assessment of what good it will do for me. One of the less exciting things about being part of the medical system is that about forty-percent of the time, the medical practitioner of the day doesn’t believe me. What this means is that I have to go through their best guess as to what will help me, have it fail, then try again to get them to give me what I need. It’s understandable and it’s infuriating. And, it’s me that suffers while they run through the standard treatments until they give me what I need – often the thing I asked for when they wheeled me in two hours ago. It’s also another loss of control. The only way I can take it back is to be the final decider of what medications and treatments I do accept – which conflicts with the current medical system’s expectation that a patient will accept a doctor’s decision on what is the best treatment, most of the time.
Even when I avoid the hospital or the urgent care, and manage to control a budding migraine at home … I still loose. As my migraines have shifted from classic (treatable by maxal and imitrex type drugs) to tension (treated by pain killers and muscle relaxants), the medications I take have had a more durable impact on my life. Maxalt and imitrex are vaso-constrictors and, so long as they don’t give you a stroke, don’t have much impact on the body aside from general icky-ness. Painkillers like vicoden and especially morphine, along with the anti-nausea meds I also take are powerful sedatives and mildly mind-altering. Today I’m a work, after taking several doses of vicoden yesterday and morphine last night … and I can’t quite figure out if I’m doing my job. Bits and pieces of memory fall away and I can’t focus well enough to follow through on things I didn’t do yesterday because of pain. The whole cycle of developing migraine and medications taken to treat it all began on Wednesday with an hour of overtime. It’s Friday now, two days later and I can expect a possible relapse on Saturday too. And this was a success.
I’m in my forties and I’ve noticed my memory isn’t as good as it once was. My writing suffers, I struggle with work and make my friends and partner suffer because I have to control my environment so stubbornly. No doubt there’s a lot of reasons I’m the way I am but I can’t help but believe that some of it comes from a lifetime of dealing with periodic, unpredictable, uncontrollable, invisible and agonizing pain.
Migraines are strange. When you’re having one, it looks like – and feels like – you’ve got some life-threatening, dangerous illness or injury. Mine come with severe projectile vomiting and shock so about half the time I look like I might be dying (and I’m certainly disgusting). And they’re absolutely agonizing; I’ve never, never been in as much pain as when I’m dealing with a migraine, plus it’s a level of agony that, if it were connected to an injury, would be severe enough to cause you to black out fairly soon. And yet, of all the illnesses and injuries available to people – migraines are the least harmful. They won’t kill you (except through suicide) and they won’t cripple you (except during the episode).
So, in a strange way, the agony I’m going through has no meaning. It’s not my body trying to tell me I’ve been clawed/shot/burned/broken … injured in some way. It’s some kind of microscopic problem somewhere in my skull; so microscopic that no one is really positive what causes migraines.
At the same time, migraines are so crippling that they reshape the rest of my life as well.
There’s no cure for migraines and no definitive treatment. I’ve gone through acupuncture, over the counter medications, prescription migraine medications like imitrex and maxalt to the fairly frequent use of serious pain-killers like vicoden and morphine. Sometimes one type of medication works, sometimes it doesn’t and – even after a lifetime – determining what will work for a particular event is mostly a matter of trial and error.
What that means is I often live in fear of triggering a migraine – especially since mine are often triggered by unexpected changes in my schedule. Miss a meal? Get a migraine. Go on vacation? Might get a migraine. Sleep late due to a late night romp in bed with the partner? Get a migraine. So, I’ve had years where I’ve refused to so much as go to a park without scheduling it days in advance (make sure I eat before I go, take my meds, make sure it’s not too sunny out). The thing is? I still got migraines.
No matter what I do, nor how much attention and effort I put into it, no matter how ‘good’ I am, there’s no way to eradicate them, no way to cure them and a limited way to control them. It’s worse, I think, because migraines are not a ‘real’ illness – for much of my life they were undiagnosed and even nowadays, no one is quite sure what they are and what to do about them. No matter how much they hurt me, I can’t put them in the same deadly class as diabetes, heart disease or disabilities like blindness, paralysis or brain injury.
I think there’s a classic psychological experiment where you give the subject random, uncontrollable punishments and they stop making any attempt to avoid the pain and kind of go crazy. It’s about the loss of any sense of control in your life and this is what the sort of migraines I have do to me.
Which, I guess, explains both why I am periodically non-compliant with my meds and also why I am so terribly inflexible to live with.
Over the years, I’ve become an old hand at what I – my particular situation – need, both in the long term and whenever I end up in the ER. It’s made me an expert on my medical needs in a way I see in very few other people – and made me kind of obnoxiously non-compliant in medical treatment unless I agree with the doctor’s assessment of what good it will do for me. One of the less exciting things about being part of the medical system is that about forty-percent of the time, the medical practitioner of the day doesn’t believe me. What this means is that I have to go through their best guess as to what will help me, have it fail, then try again to get them to give me what I need. It’s understandable and it’s infuriating. And, it’s me that suffers while they run through the standard treatments until they give me what I need – often the thing I asked for when they wheeled me in two hours ago. It’s also another loss of control. The only way I can take it back is to be the final decider of what medications and treatments I do accept – which conflicts with the current medical system’s expectation that a patient will accept a doctor’s decision on what is the best treatment, most of the time.
Even when I avoid the hospital or the urgent care, and manage to control a budding migraine at home … I still loose. As my migraines have shifted from classic (treatable by maxal and imitrex type drugs) to tension (treated by pain killers and muscle relaxants), the medications I take have had a more durable impact on my life. Maxalt and imitrex are vaso-constrictors and, so long as they don’t give you a stroke, don’t have much impact on the body aside from general icky-ness. Painkillers like vicoden and especially morphine, along with the anti-nausea meds I also take are powerful sedatives and mildly mind-altering. Today I’m a work, after taking several doses of vicoden yesterday and morphine last night … and I can’t quite figure out if I’m doing my job. Bits and pieces of memory fall away and I can’t focus well enough to follow through on things I didn’t do yesterday because of pain. The whole cycle of developing migraine and medications taken to treat it all began on Wednesday with an hour of overtime. It’s Friday now, two days later and I can expect a possible relapse on Saturday too. And this was a success.
I’m in my forties and I’ve noticed my memory isn’t as good as it once was. My writing suffers, I struggle with work and make my friends and partner suffer because I have to control my environment so stubbornly. No doubt there’s a lot of reasons I’m the way I am but I can’t help but believe that some of it comes from a lifetime of dealing with periodic, unpredictable, uncontrollable, invisible and agonizing pain.