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nym_wibbly
I've been so useless this week. I can't concentrate on anything, motivate myself to do much, and when I do manage to sit down to a task, it's bloody hard work. Writing, reading... even watching TV is hard work. As far as I can tell, it's my usual, inbuilt ick rather than anything to do with the surgery, which is healing up uneventfully. It's so frustrating that my body can bounce back heartily from having actual parts severed and lesser organs removed, but betrays me regularly for 'overdoing it' - in this case defined as doing something that most people take for granted, like a trip to the shops for essentials, reading a leaflet or article, or having a short phone conversation.
I thought I must just be mis-perceiving the situation as I lay there in hospital, astonished, but after this week, I'm sure. My chronic illness, and migraine, are far, far more painful and debilitating than a double mastectomy. That certainty really puts things into perspective. Strong painkillers are standard after a mastectomy - fentanyl, morphine. It's assumed you'll need them until you leave hospital, though I had a fight on my hands to get a small supply of something sent home with me - not anything stronger than my regular prescription (which is what they'd usually send a mastectomy patient home with), but something that I could top it up with if I needed to, being so tolerant of the first drug, and thus finding it less effective than would someone who's never taken it before. Strong painkillers are difficult to impossible to obtain for a chronic, invisible illness - healthcare providers place more weight on the potential for addiction or abuse (i.e., selling drugs on rather than swallowing them) than on pain levels, if the pain is chronic. The dividing line for prescribing the good stuff is between acute/chronic, when it should be a graduated response to one's actual level of pain on a scale of 1-10, taking all other factors into account. My GP is understanding, and I've proved to him that I'm able to use controlled drugs responsibly - that I keep them for emergencies and take steps to avoid dependency - but he's limited by prescribing rules in what he can give me. If my pain is worse than X drug can manage, it's tough luck.
Neighbours keep being incredulous that I'm doing so well after such major surgery. I can't effectively explain to people that this discomfort is nothing - almost literally nothing - compared to the pain I've been in for 20 years. In my depressed moments, that keeps reminding me of just how much invisible pain I live with, and how little recognition it gets - how little understanding most people have of what I'm coping with, moment to moment, on top of, say, keeping up my end of a verbal conversation, counting out money, comparing one set of information with another, or reading the leaflet they just handed me. I struggle through the most basic tasks. All the time, except for those rare ray-of-sunshine days when, for some unidentified reason, I suddenly don't.
On the other hand, after two surgeries in half a year, and a year before that of acute gallbladder pain, I've proved to myself that I am well fucking hard when it comes to pain that would floor most people. That's a positive feeling - I don't fear pain in the same, immediate way that most people do; I can take the long view, remain calm through it, and thus remove a lot of the distress that would otherwise go with it. The only thing that made me fall apart during the past few weeks was an uncontrolled migraine - and with my prevention drugs (which the hospital withheld), that doesn't need to happen any more, and hasn't happened in two years since I started my current cocktail of preventatives.
I may be living in pain more severe than major surgery, but I CAN deal with it calmly, sensibly, positively (much of the time) and (as far as I'm allowed) with responsible use of pain control.
In other news, the cat, who hates it if I type for too long, just carefully aimed her rear end at my forearm, sat down hard to trap my arm and wrist, and left a bumhole-shaped grubby mark on my white sleeve. What would I do without her?
I thought I must just be mis-perceiving the situation as I lay there in hospital, astonished, but after this week, I'm sure. My chronic illness, and migraine, are far, far more painful and debilitating than a double mastectomy. That certainty really puts things into perspective. Strong painkillers are standard after a mastectomy - fentanyl, morphine. It's assumed you'll need them until you leave hospital, though I had a fight on my hands to get a small supply of something sent home with me - not anything stronger than my regular prescription (which is what they'd usually send a mastectomy patient home with), but something that I could top it up with if I needed to, being so tolerant of the first drug, and thus finding it less effective than would someone who's never taken it before. Strong painkillers are difficult to impossible to obtain for a chronic, invisible illness - healthcare providers place more weight on the potential for addiction or abuse (i.e., selling drugs on rather than swallowing them) than on pain levels, if the pain is chronic. The dividing line for prescribing the good stuff is between acute/chronic, when it should be a graduated response to one's actual level of pain on a scale of 1-10, taking all other factors into account. My GP is understanding, and I've proved to him that I'm able to use controlled drugs responsibly - that I keep them for emergencies and take steps to avoid dependency - but he's limited by prescribing rules in what he can give me. If my pain is worse than X drug can manage, it's tough luck.
Neighbours keep being incredulous that I'm doing so well after such major surgery. I can't effectively explain to people that this discomfort is nothing - almost literally nothing - compared to the pain I've been in for 20 years. In my depressed moments, that keeps reminding me of just how much invisible pain I live with, and how little recognition it gets - how little understanding most people have of what I'm coping with, moment to moment, on top of, say, keeping up my end of a verbal conversation, counting out money, comparing one set of information with another, or reading the leaflet they just handed me. I struggle through the most basic tasks. All the time, except for those rare ray-of-sunshine days when, for some unidentified reason, I suddenly don't.
On the other hand, after two surgeries in half a year, and a year before that of acute gallbladder pain, I've proved to myself that I am well fucking hard when it comes to pain that would floor most people. That's a positive feeling - I don't fear pain in the same, immediate way that most people do; I can take the long view, remain calm through it, and thus remove a lot of the distress that would otherwise go with it. The only thing that made me fall apart during the past few weeks was an uncontrolled migraine - and with my prevention drugs (which the hospital withheld), that doesn't need to happen any more, and hasn't happened in two years since I started my current cocktail of preventatives.
I may be living in pain more severe than major surgery, but I CAN deal with it calmly, sensibly, positively (much of the time) and (as far as I'm allowed) with responsible use of pain control.
In other news, the cat, who hates it if I type for too long, just carefully aimed her rear end at my forearm, sat down hard to trap my arm and wrist, and left a bumhole-shaped grubby mark on my white sleeve. What would I do without her?
no subject
Date: 21 Jun 2019 12:05 (UTC)I remember having a double root canal a few years ago, and had been warned how painful and terrible it would be. And afterwards I was like, "This isn't so bad. What are you talking about? And the pain only lasts for 24 hours at most."
People have no idea.
no subject
Date: 23 Jun 2019 05:59 (UTC)It's changed my outlook significantly, just getting to know you and how well you cope with different stressors. I don't know what could be more proof that your chronic illness and pain is a) serious, b) disabling, and c) an inhuman level of suffering that nobody seems to comprehend.
Wish I could make that life sentence more bearable for you. But you're right, you are damned tough, and you should hold your head high for those coping skills you have earnt that most people couldn't dream of.