"My stomach pain is 3/10 but the muscle pain is 7/10"
I know what that muscle pain (myalgia) is like, I have struggled with it daily for the last few years, maybe you too know how bad it is. Maybe you have had 'flu and you felt every muscle in your body scream and ache, that's what we are talking about.
But not in my chronically ill broken body, not a friend, but my sweet, funny, kind, teenage daughter.
I know what it is like and I don't know if it makes it better or worse, I know the feeling of sleeping for 10 hours and waking up exhausted. Feeling like your warm, soft bed is full of rocks, feeling like you have run a marathon, when you have only made it to the bathroom. I would gladly double my load if only that my daughter didn't have to go through this too.
We are full of hopes and dreams for our children and those never include chronic illness and suffering. We worry about them getting into trouble, not doing well at school, not making good friends, getting sun burnt or eating too many sweet and getting a cavity. Something we never see is months or years lost to being in bed sick, weekly hospital visits and them getting used to blood tests.
Then she starts to get used to being in pain. I ask her several times a day "How is the pain?" unless I press her beyond answering "OK" nobody would be able to tell that she was really suffering, so I adopted the hospital 0-10 pain score. She lives in between 3-6 out of 10 and only ever gets upset when it climbs past 7. It feels so wrong that a child should be used to pain and able to cover it up on a day to day basis.
Worse than the pain, worse than any of it is when the doctors don't believe you, recently a senior doctor at the hospital took me aside and tried to tell me that my daughter wasn't in as much pain as she said, "She isn't rolling around the bed screaming.."
I heard myself respond a lot louder and more assertive than I meant to, "When you live with pain every single days you don't roll around and scream anymore!" I saw the other doctors around flinch and the senior gave up what he was trying to tell me.
Surely any sane person can realise that you acclimatise to pain, you might start of screaming and rolling round the bed, but a year later, you wont be shouting out, because nobody is coming to help, so what is the point?
This is what kills me the most, its worse than the rest, the missed school can be caught up on, life can be rebuild, but the experience will forever leave scars on both of us.
Showing posts with label heartsink. Show all posts
Showing posts with label heartsink. Show all posts
Sunday, 18 June 2017
Saturday, 25 February 2017
Heart Sink
Trying to talk myself out of a panic attack sitting outside the GP office like a naughty student at the headmasters office. I'm waiting for the paperwork for a transfer to hospital and I am, of course, very scared. There are two ways that my appointments usually go, the younger doctors tend to look a bit panicked, the older ones get that "Heart Sink" look.
If you aren't familiar with the phrase "heart sink patient" well lucky you! Its a rather derogatory term for patients that are seen as a pain in the backside and you get that 'heart sink' feeling when they enter the office. If you google it you will find stories of doctors who have these AWFUL patients that waste their time with their (probably fictitious) idiopathic pain. These patients are never *happy*, never get better, just keep coming back! Before you feel sorry for those overworked GPs and their difficult workload, listen to the other side of the desk.
The doctor I saw was less experienced, she started to look panicked as I outlined my worrying symptoms and history. By the time I was finished she has physically moved back from me, like I was an un-exploded firework that may go off at anytime. Still wet enough behind the ears to hope for a more senior person to take this train wreck off her. The obvious choice, of course, being the hospital, they'll know what to do. She is of course making the right decision, anyone this medically complex needs investigation.
I want to make something absolutely clear, this next point is vitally important, please take it in and digest; I don't *want* to go to the doctors and I'm terrified of the hospital. No, I'm not bored, lonely, slacking off something, looking for attention, the *only* reason I would consider going to the hospital is if I *believe my life is in danger*. Four times the hospital sent me home on the verge of heart failure, twice they sent me home with acute pancreatitis (if you don't know what that is, it will kill you if not treated), FOUR times they sent me home saying it was impossible for my condition to have progressed the way I was claiming (which it had and it was potentially fatal) FIVE HOURS I sat in A&E before anyone noticed that I was slowly bleeding to death. Every time I was treated like I was a time waster, mentally ill, attention seeker, I was told that I needed to get serious psychiatric help or that I didn't love my kids and wanted to get away from them. That is abuse, it is gas-lighting, belittling behaviour dealt out by someone in complete control of your life. One night I was in agony all night with pancreatitis and the nurses withheld painkillers for hours and then made fun of the way I was acting "looks like shes about to give birth!". The hospital is *not* a fun day out for me, it is somewhere that I have nearly died several times and a lot of the time, not in the best care. Not that I'm saying all doctors and nurses are like that, not at all. I used to sit on that side of the desk, they're just people, people who set out wanting to help other, people who under the right circumstances easily slip into institutional abuse. People who label patients as "heart sink" or "frequent flyers" and cant see them as fellow humans anymore, just a problem to be passed on as soon as possible.
On a normal day I wake up exhausted and in pain, having had little sleep, because it feels like my mattress is full of rocks. Its not of course, in fact its a relatively new and not cheap mattress, but everything HURTS ALL THE TIME. After several complicated conditions my body has had enough and rebelled, now I have chronic pain and fatigue. That's how you become a "heart sink" patient, you survive. Maybe you get through one particularly traumatic accident, or an all too close health scare, you pick yourself up and dust yourself off. The doctors involved in saving you get a well deserved pat on the back. Perhaps you are even interesting enough to get a case study written about you and all the student doctors want to talk to you because you are such an interesting specimen. You take yourself back to work, whatever your daily routine looked like before and you are happy to be alive. You are a success story!
Then, a few month or a year later something else happens, you nearly loose your life again. It takes that bit longer to get back on your feet and you don't feel able to do quite what you did before, there are complications. After two close calls where you were fobbed off as "over anxious" you become a self fulfilling prophecy, becoming anxious about health concerns, about every time you need to see a health care professional. You end up sitting outside the doctors office trying to talk yourself out of a panic attack, because you know once you panic, or start to cry, you loose all respect from the doctor and become a problem no one wants. An over anxious, crying, hysterical woman with a complicated medical history.
So why do I keep going back to the doctor with constant complaints of fatigue and pain and other conditions that never get better? Well because, I remain, as a fellow "chronic" said to me, 'defiantly alive'.
2 tired and a toddler
If you aren't familiar with the phrase "heart sink patient" well lucky you! Its a rather derogatory term for patients that are seen as a pain in the backside and you get that 'heart sink' feeling when they enter the office. If you google it you will find stories of doctors who have these AWFUL patients that waste their time with their (probably fictitious) idiopathic pain. These patients are never *happy*, never get better, just keep coming back! Before you feel sorry for those overworked GPs and their difficult workload, listen to the other side of the desk.
The doctor I saw was less experienced, she started to look panicked as I outlined my worrying symptoms and history. By the time I was finished she has physically moved back from me, like I was an un-exploded firework that may go off at anytime. Still wet enough behind the ears to hope for a more senior person to take this train wreck off her. The obvious choice, of course, being the hospital, they'll know what to do. She is of course making the right decision, anyone this medically complex needs investigation.
I want to make something absolutely clear, this next point is vitally important, please take it in and digest; I don't *want* to go to the doctors and I'm terrified of the hospital. No, I'm not bored, lonely, slacking off something, looking for attention, the *only* reason I would consider going to the hospital is if I *believe my life is in danger*. Four times the hospital sent me home on the verge of heart failure, twice they sent me home with acute pancreatitis (if you don't know what that is, it will kill you if not treated), FOUR times they sent me home saying it was impossible for my condition to have progressed the way I was claiming (which it had and it was potentially fatal) FIVE HOURS I sat in A&E before anyone noticed that I was slowly bleeding to death. Every time I was treated like I was a time waster, mentally ill, attention seeker, I was told that I needed to get serious psychiatric help or that I didn't love my kids and wanted to get away from them. That is abuse, it is gas-lighting, belittling behaviour dealt out by someone in complete control of your life. One night I was in agony all night with pancreatitis and the nurses withheld painkillers for hours and then made fun of the way I was acting "looks like shes about to give birth!". The hospital is *not* a fun day out for me, it is somewhere that I have nearly died several times and a lot of the time, not in the best care. Not that I'm saying all doctors and nurses are like that, not at all. I used to sit on that side of the desk, they're just people, people who set out wanting to help other, people who under the right circumstances easily slip into institutional abuse. People who label patients as "heart sink" or "frequent flyers" and cant see them as fellow humans anymore, just a problem to be passed on as soon as possible.
On a normal day I wake up exhausted and in pain, having had little sleep, because it feels like my mattress is full of rocks. Its not of course, in fact its a relatively new and not cheap mattress, but everything HURTS ALL THE TIME. After several complicated conditions my body has had enough and rebelled, now I have chronic pain and fatigue. That's how you become a "heart sink" patient, you survive. Maybe you get through one particularly traumatic accident, or an all too close health scare, you pick yourself up and dust yourself off. The doctors involved in saving you get a well deserved pat on the back. Perhaps you are even interesting enough to get a case study written about you and all the student doctors want to talk to you because you are such an interesting specimen. You take yourself back to work, whatever your daily routine looked like before and you are happy to be alive. You are a success story!
Then, a few month or a year later something else happens, you nearly loose your life again. It takes that bit longer to get back on your feet and you don't feel able to do quite what you did before, there are complications. After two close calls where you were fobbed off as "over anxious" you become a self fulfilling prophecy, becoming anxious about health concerns, about every time you need to see a health care professional. You end up sitting outside the doctors office trying to talk yourself out of a panic attack, because you know once you panic, or start to cry, you loose all respect from the doctor and become a problem no one wants. An over anxious, crying, hysterical woman with a complicated medical history.
So why do I keep going back to the doctor with constant complaints of fatigue and pain and other conditions that never get better? Well because, I remain, as a fellow "chronic" said to me, 'defiantly alive'.
2 tired and a toddler
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