Thank you for taking moment to read my thoughts from tonight.... I know chronic pain isn't fun to think about, but I ask that you take just a moment to hear a few thoughts.
I hope that if you're suffering with chronic pain, that this blog will help you share how you are feeling with those that don't understand. And if you don't have live in pain, that this may open your eyes to a situation you didn't know existed.
Your comments are welcome & encouraged.
Do you know what living with chronic pain is like?
I have to ask - have you ever woken up from the pain of your hip having been dislocated for hours? Has the weight of carrying a magazine or holding a package of markers ever dislocated your wrist? Have you ever been so exhausted by taking a shower that you spent the rest of the day recovering? Have you ever had to stop in the middle of signing your name because your fingers dislocated from the pressure of the pen? Have you ever taken a step only to hear a sickening snap, unsure if something broke this time - or if its just 'out again'? Chronic pain isn't a competition - maybe you live with migraines or have suffered from a serious car accident. Regardless of the cause - living with pain that doesn't go away is more than most people can wrap their minds around.
Chronic Pain and how we're treated by Medical "Professionals"...
I want to talk for a moment about how chronic pain is TREATED and how badly those of us who seek treatment are treated by medical staff. I would like to talk about how you can go into any doctor's office and you have 100% of the staff's attention and concern until you mention ONE thing - that PAIN that just won't go away.
Let me be clear - I have never been diagnosed nor have I been suspected of suffering from mental illness. I was a police officer (back in my health) who had a respectable career which was never marred or disgraced. I've never been arrested, never been in any real trouble of any kind, and I have never abused or misused prescription medications - my experience with "partying" was limited to trying marijuana a handful of times at 20 years old when I worked at the Renaissance Faire. I knew early on that I wanted to work in law enforcement, and I took that seriously. And even though years later, I take powerful opiate medication EVERY day - I have to be clear: I am no more addicted to the pain medication that I am DEPENDANT upon than a diabetic is "addicted" to the insulin they take.
People like myself, living with severe chronic pain KNOW that you emergency room nurses, ER doctors and our own family physicians are so cynical and burnt out that by default you don't believe ANYONE who leads off complaining of pain. We've been talked to like the scum of the earth while writhing with pain worse than you've likely ever experienced. Short of major surgery, days of undiagnosed appendicitis or a compound fracture - it's not likely you've ever had to answer questions while unable to complete your thoughts because of pain.
We see the looks you give us from behind the pharmacy counter - the suspicion, the disgust. We hear your whispers from beyond the curtain. We've heard it from our own family members or friends, not to mention every medical staff member who's asked what medications we take. If, god forbid, someone HAS prescribed any controlled substance, that questions is immediately followed by a disbelieving "but WHY?". AT the first mention of ANY opioid (unless we're also dying of cancer) the suspicion abounds and our treatment immediately disintegrates. We're treated as if we're criminals, addicts, common junkies... and we hear you. We see you. And we'd like to know- what would YOUR solution be to the pain we live with? For whom do you think these medications were created? How exactly would YOU do it better and would you be willing to take our pain for 30, 90, 365 days in order to prove how you could handle it with just ice packs and ibuprophen?
My Pain Management.
Yes. I do take morphine. Every day - for five years, once a month, I drag myself out of the house regardless of how I feel to sit through an appointment that can last up to five hours. I'm subjected to a urine test monthly - to make sure I'm taking the prescribed medication and not selling it. They also make sure I'm not taking anything they haven't prescribed. And I have to PAY for the indignity of not being trusted - did you know that?
Sure; The bottle says every 12 hours, but I'm human... occasionally I'm lucky enough to sleep too long, or I get mentally busy and I forget- and then I get to feel not only the pain. The pain that comes rolling in, in waves, but I also get to feel that distinctive sickness...I get to experience the SUDDEN, SHARP and repeated painful yawning (there goes my jaw, out again).... the ice cold sweat stinging my eyes, the nausea, the dizziness, and quickly my mind can't focus (even on the pain). My palms sweat... and that's just the beginning. But thank god I have another pill to take- and in fifteen to thirty minutes both the WORST of the pain and that awful illness will fade... that's what I remind myself each time I'm overdue for a dose. At least I have the option to take a pill and it will fade.
But without that monthly appointment, and without that pill, I'm reminded, in excruciating detail- of every movement I've made in the last ten days. I'm reminded of just how many fingers, which wrist, knee and how many ribs I've dislocated and subluxated and, of course, which hip has spent more time *out* of its socket than where it belongs. Don't get me wrong - I'll still feel all of that once the pill kicks in, just a little less clearly (thankfully). It never actually goes away.
We aren't all so "lucky".
For hundreds of thousands of others like myself - those who have yet to be diagnosed, those who have yet to be believed, those who have yet to find a doctor willing to prescribe them any kind of long term or extended, slow-release or powerful enough pain medication... for them the relief never comes. They get to feel ALL of it, ALL of the time.
Thousands of people living with the same pain that I face , will make a heartbreaking and permanent choice - often the only choice they feel they have left: many of them end their lives. I even, sadly, can understand why they make that choice.
These people aren't dying from losing the fight with depression. They aren't overdosing because they lost the handle on an addiction. Please, take my word for it- living with this constant chronic 10/10 pain, in which EVERY movement you make, every breath you take, is met with excruciating pain... there are only two choices- PROPER pain management or death. There is no in between- no one is designed to live in devastating pain. And when you have NO options for controlling the pain - people resort to things you never think they would. Honest, law-abiding people will inject themselves with sketchy heroin just to get a brief break from the pain - and sometimes those people overdose and die, and then their family learns that they overdosed, and people are blaming this horrible situation on the DRUGS and not the REAL PROBLEM: Chronic pain that is being IGNORED by the entire medical industry!
I know that despite the Ehlers Danlos Syndrome, I am so very lucky. I am EXTREMELY fortunate to live in a place where I have help watching my son, where I'm covered by insurance that pays for most of my medical care and medications. I know how lucky I am to have an incredible husband who fought for me and advocated for me and who attended SO MANY awful hospital stays and doctors appointments with me until we found the right team of doctors. But even with a rheumatologist, a gi, an endocrinologist, an orthopedist, an allergist, a dermatologist, a uro-gynocologist, and an oral surgeon who specializes in EDS (and pulled ALL my disintegrating teeth thanks to the EDS) plus a fantastic general practice doctor... it was only ONE specialist, after three years who was willing to write scripts that would eventually get me out of bed and keep me out of the constant rotation of hospitals - by prescribing the powerful long acting opiate pain medication that I've taken every day for five years. But I can't tell you what I might have chosen if I hadn't finally gotten relief through LEGAL and WELL REGULATED medication - it could have been heroin - it could have been suicide.
I remember, each time I'm late taking a dose, each time my pain is still a 10 and I can't take anything more medication for hours for the breakthrough pain... I try to focus on the hundreds of thousands of people who DON'T have that one amazing doctor, or that incredible husband to advocate when they were too weak or too depressed and in too much pain to make just one more phone call, or to go to just one more appointment - Many people can't stomach one more visit with a doctor where they can expect to be treated like a junkie looking for a fix rather than a patient in PAIN. I know how lucky I am.
What do you do when you can't get anyone to help?
People like myself live with pain that makes you break out in a cold sweat, the kind of pain that you can not experience without squeezing your eyes (filled with tears) closed and focusing on your next breathe, a pain that is SO searing, so hot, so electrifying that you can't sleep for days at a time...giving rise to the term "painsomnia"... and there are *millions* of us living with this unending pain, and the *LUCKY* ones have access to medication that only *sometimes* helps.
The pain NEVER fully goes away - even when we're laughing, or eating our favorite food or celebrating our birthday or a promotion or doing something unusually active (that we'll no doubt pay for later)... the pain is still, EASILY, the number one thing on our mind, no matter how hard we try to focus on whatever BETTER might be going on.
And on our bad days? If you don't live with one of us, you've likely never seen or heard from us during the bad days. When we're sick or sad or heartbroken or swimming in one disaster after another...our pain just AMPLIFIES anything bad and makes it THAT. MUCH. WORSE. It's not a mystery why people with chronic pain are ending their lives in STAGGERING numbers, or why people are turning to street drugs when their pleas for relief from the pain have been ignored for months or years on end.
Having a "good day" can be the worst thing -because we tend to over-do it. We want to cram in everything we haven't been able to do in the last few weeks, or months, because hell, we never know when -or if- we'll ever get another "good day". And worse than overdoing it, and paying by needing days of recovery for a simple day of running errands - is the immediate judgement when we're seen out and about - god forbid we are laughing or smiling - because then it's assumed we are ALWAYS fine and that the other 99.9% of our life is a great big lie. How do you think that feels - to be told that we aren't EVER allowed to look or act well, because while sure, our friends and family want us to participate in our own lives... as soon as we do, it's assumed that we should ALWAYS be able to. It's a horrible, horrible Catch-22.
In reality, chronic pain and chronic illness doesn't conveniently disappear when the weather is nice, when we're starving and need to get groceries, on our wedding day or when the baby cries and the dog needs to go out... it doesn't turn off during that one day we have off from work this week, during the vacation we planned months in advance, or on the afternoon our spouse is both off from work AND "in the mood"... it doesn't give us the evening off on the evening of the concert you got tickets to AND found a babysitter for. It's ALWAYS there. And PATIENTS with chronic pain and chronic illness don't go away just because the hospital discharges them, the ER sends them out the door, or their doctor's office says "sorry, we can't or won't prescribe you medication that can help you."
Severe chronic pain is all-encompassing & it doesn't give you a break, ESPECIALLY not when you need a break the most. As a matter of fact, those are the times when the pain is at it's worst.
And we aren't supposed to talk about it either.
We try not to talk about it for fear of being a constant bummer - we are often downright in FEAR of the moment a doctor asks for a number to describe our pain. Do we downplay it so they don't think we're exaggerating? Do we tell the truth and risk that they assume we're hypochondriacs or just jonesing for a fix? They don't see that we turn down attending FAR more fun events than we attend or have missed so much work that our job is in danger and when we were absent and we say "I had a bad day" or "I wasn't feeling well" it WASN'T just like last week when you had the sniffles and stayed home from the office with a good book and a hot tea. When we are brave enough to tell a doctor that our pain is a 10 - it has probably BEEN a 10 for a very long time. And sadly - we're probably EXPECTING an eye-roll in response.
If you work in the medical profession I have ONE request... (PLEASE understand - I know that you work in a VERY demanding and difficult line of work. I do realize how much pressure is on you NOT to treat our pain.)
But PLEASE... Please take a moment with each and every patient to remember, for a moment, that not everyone who tells you they are in pain is just looking to get high.
1) Speaking for all of us in constant pain - I beg of you: PLEASE don't immediately judge us. Please don't assume that because we are crying too much, or not enough - because we are preoccupied on our phone or curled into a ball - please know that we all cope differently and just because we aren't sobbing and begging, it doesn't mean that we don't want to.
Please don't leap to the conclusion that no one is *really* in pain. For many of us, it took 200% of our effort just to drag clothes onto our bodies and to get to this appointment or into your ER in the first place. At least listen to us. Please talk to our close family members, take a complete medical history, really LOOK at the big picture. Please don't just tune out the moment that you hear that we're in pain.
And for those of you who don't work in the medical profession : perhaps you have a friend or family member suffering. Please try to remember that we didn't ask for this pain. We don't deserve to be treated like addicts, like people who make poor choices or who take "drugs" for fun. If we're lucky enough to HAVE access to pain medication, and we're taking it responsibly - please don't judge us. And if you're concerned, TALK to us, not about us.
Now if you'll excuse me, I have to put my wrist back in and tape it there before the swelling gets any worse- typing this really did a number on me. I'm about nine hours from my next dose, so I suppose I won't be sleeping again tonight... the chest pains from my out of place ribs feel very much like a heart attack... but I'm going to try some meditation and to lie in the dark and hope I can will away the throbbing that started from dislocating my left wrist that happened from holding my cell phone while I tapped this blog post out on it.
I hope you'll rest well tonight. Please keep those who can't rest because of chronic pain in your thoughts.
We really DON'T want your sympathy. We just want to be treated with respect and understanding.
Life at 34, as a mother, a wife, a daughter, a friend... with Ehlers-Danlos Syndrome, nothing is easy..but it *IS* worth it.