Pain management and access to opioids for appropriate patients and circumstances is obviously a very important topic to me. I’ve written a lot about it. I’lll write a lot more. Currently there is another push on to limit opioids for chronic pain patients. The entire campaign is based on misinformation, and while it implies that opioids will still be accessible, but only via a pain management specialist rather than a GP, this is a fallacy.
Pain management doctors do not prescribe opioids. They are of the belief – and I use the term ‘belief’ quite purposefully because this belief is not based on scientific study, or any kind of evidence at all -the belief that opioids are ineffective for long term pain.
This is rubbish.
I am disabled by pain. I accept that I will always be in pain, and I have a very high tolerance for pain. I can push through a whole lot of it to do what I need to do. BUT there is an un-crossable line. A level of pain through which I can do nothing but lie on the couch (and often cry).
Even with opioids, I can’t walk more than 100 metres. Even with opioids, I spend a large proportion of my day lying down. I have no choice about that. But if they take my opioids away, I will not be able to live.
There is another problem with this whole debate – the public perception of what an opioid is, what it is for, how they affect people and what kind of person takes them.
My closest friends for the last 8 years, yes those ones, the ones who dumped me after the surgery, then sent me a barrage of nasty text messages for weeks telling me what an awful person I am, THOSE friends knew everything about my disease and my pain. They read my blog. We discussed it.
But still, they didn’t get it.
There was a day when they came to my house unexpectedly. They knew I was in bad shape, so they visited. But I was in really, really bad shape. They’d never seen that before. I was in so much pain I was semi-conscious and barely lucid. Hindsight shows I was in adrenal crisis, and I could have died.
My friend saw me on the couch and immediately assumed that I was passed out because I’d taken too much oxycodone. Immediate assumption. Not that I was in pain, not that I was sick, that I’d taken too many pain pills.
My friends decided to help me by cleaning my kitchen for me. That was a really nice gesture.
BUT. Because of his lack of knowledge of opioids, because of his bias against opioids, because of his belief that I am a drug addict because I take opioids every day, my friend just left me there.
Seriously, ask yourself. What would you do if you got to your friend’s house, and they are barely conscious, on the couch.
What do you do?
How about get them to a doctor???
Nope. Go tidy the kitchen, and leave.
I was un-rousable. I didn’t wake when they ran a vacuum cleaner a few metres away from me.
They left me that way.
No concern for my welfare, because I had ‘just’ taken too many pills as far as he was concerned. My closest friends. The friends who agreed to care for my children, should I die before they come of age. THAT kind of friends. Not just friends, family. That’s how I thought of them. That’s how they told me they thought of me.
Actually, turns out they lied. Silly me.
They left me there. I’m pretty sure if they didn’t know I take oxycodone they wouldn’t have made that assumption. They might have been concerned that I was passed out on the couch. But nope, I’m just a drug addict.
Even if they were correct, and I HAD taken so much oxycodone that I was unresponsive, they STILL should have called an ambulance. Even if they’d been right, they were still wrong.
Nope. He just figured I was a drug addict. Taken a few too many, sleep it off.
He told me so while he was sending me abusive texts and harassing me for ending the friendship and writing about it. Because they’re such good people and I’m such a decrepit human being. I’m so glad he had the opportunity to get that off his chest. Harass me while I was still struggling with PTSD, and the physical deficits from the surgery.
And all because they have no idea about real pain, or what opioids are and are not, and what an addict is and is not. (And because they really don’t like me very much, I guess).
So yeah, very personal issue. Very personal.
So I am gathering my information and I am going to start an advocacy group. I will need help. I can’t do this alone. I have two or three hours a day, because the PAIN is so bad. I am disabled by pain. I know those of us who live this way are the very small minority. BUT our needs cannot be forgotten in the public relations storm over the ‘opioid epidemic’ that doesn’t actually exist in Australia. More people die on our roads every year than are killed by opioids. Deaths related to drugs, ALL drugs, doesn’t even make the top 10.
I’m going to start a private group, for anyone affected by these changes, or anyone who’s interested. I’ll start a NFP if necessary…my life depends on this. Not exaggerating.
I no longer want to be judged, even by those closest to me.
I no longer want to be stigmatised and treated as an addict.
I no longer want to live with the threat of my pain medications being taken away.
I want to raise awareness of what it is like to live with a painful, degenerative disease.
I want to tell my story, and I want to tell other people’s stories too.
I want to lobby the powers that be to protect our right to have our pain acknowledged and treated appropriately.
I have no effing idea HOW I’m going to do all this. But I am going to do it.