I found this marvelous essay by Kitty Kavenaugh, which luckily encourages sharing it, so here it is:
Most of my friends know that I take oxycodone (Targin, the slow-release version, and then quick-release Oxynorm for break-through pain). They know that I need it in order to control my pain and they know that using it doesn’t make me a drug addict. They get that there’s a difference.
But every now and then, a relatively new friend will make some direct or indirect comment about how I shouldn’t be taking it. Their body language changes. They become tense across the shoulders and lean back a little, suddenly sceptical of my character. After several such encounters over the past few weeks, I feel compelled to explain why I take pain medication, what it means for me and to dispel some myths about opioids and their long-term use in people with chronic pain.
A couple of years ago, I started seeing a pain specialist who helped me change my life. Back then, I had no social life and was unable to work or study. I was awake in agony every night until the early hours of the morning – sometimes, until after sunrise – and would sleep restlessly until the early afternoon. I had to be utterly exhausted to fall asleep, at all. I had no quality of life and often questioned whether it was worth it to keep battling through it all.
My pain specialist (Doctor Eric Visser in Perth, Western Australia) asked me, at my first appointment, what my average level of pain was, during the day. I said it was about a 5, so long as I could battle through my physiotherapy routine, which helped to release my ridiculously tight muscles. Physio hurts, but knowing that I’d be in slightly less pain afterward made it worth it. When he asked what I’d like for it to be, I said I could handle a 4. He shook his head and said, “No. Having pain is not normal. Healthy, average people do not have pain every day and it’s bad for you to be in pain, all the time. Let’s work on getting your pain down to a 1, shall we?” I nodded, but didn’t believe that was possible. He started me on Lyrica, which is a non-opioid medication for the neuropathic and muscular pain of Fibromyalgia. He also prescribed me Oxynorm, for the nights when my pain became unbearable, so I wouldn’t have to endure the 3am anxiety attacks that plagued me, then.
That combination improved my life so dramatically that, with some coaxing and encouragement from friends, I sat the STAT (Standardised Tertiary Admissions Test) and passed with flying colours. I was going to start a Bachelor of Biomedical Science with a major in Human Genetics.
Admittedly, I pushed myself far too hard in my first semester. Starting with 4 units didn’t go well for me. But I’m extremely stubborn and finished the semester with only one unit that I had to withdraw from. My body became so frail that my 5’7” frame ended up at 116lbs and my immune system was crippled. I had to wear those pandemic masks everywhere and had warnings from doctors that if I didn’t slow down, I was going to develop pneumonia and end up in hospital. I’m telling you this because I want to make it clear that I am not a “weak person”. There is a common belief that we take opioids because we’re not strong enough to handle “real pain”. In my experience, the people who say that have never had to endure “real pain”.
Then, in first semester this year, having managed 3 units the semester before, I developed a full-blown gluten intolerance. It took me a couple of months to work out what was going on and in that time, my pain got completely out of hand. The inflammation in my fragile joints (yes, all of them) was awful and I had to drop to 2 units. The neuropathic pain from my Fibromyalgia was the worst part. Even the seams on my clothes brushing against my skin hurt. This continued even after I’d stopped eating gluten. Doctor Visser assured me that this was nothing we couldn’t handle (I love that he says “we” and “us”, like we’re a pain-fighting team), increasing my Lyrica and prescribing Targin, to help tide me over until I’d gotten my Lyrica dosage high enough.
However, once that happened, I noticed that the pain in my lower back wasn’t reducing. It felt different, too – it was a different kind of pain. In many ways, it was worse. Still is worse. My GP sent me for a lumbar/sacral CT scan that showed nothing to explain my pain. We believe it’s caused by instability, due to my Ehlers-Danlos Syndrome. EDS makes all my joints too loose and, of course, the spine is one long string of joints. Where it connects to the pelvis is called the sacroiliac joint. We believe mine (along with the vertebrae above it) is far too loose and that’s likely causing my pain. The worst part is that it hurts the most when I’m still. As I’m sure you can imagine, this makes sleep impossible without opioids. The longer I’m still, the worse it gets. The pain radiates down my legs, like a vice around my muscles, and the feeling at the base of my spine is like someone twisting a serrated blade in a slow, consistent motion.
Ask yourself: could you sleep through that, every night?
For most people, the notion of pain like that is far-fetched without someone visibly twisting a knife in my back. But I guess “visible” is really the key term, here. My pain is almost never visible. The constant, insidious pain in my muscles and joints only exists to other people if I tell them about it. But because they can’t see any obvious cause, they often don’t believe me. I think that’s part of why chronic pain patients who have invisible illnesses have to endure so much harassment, interrogation and accusation from those around us.
For me, opioids are a tool. They enable me to sit through a lecture at university and actually focus enough to take notes and understand the content. Pain causes “brain fog” – serious cognitive impairment. If you had someone repeatedly jabbing you in the thigh with a fork and pinching your skin all over throughout a lecture, could you focus? They also make it safer for me to participate in my lab classes. When you can’t focus, it becomes difficult to trust yourself with things like measuring out 20 microliters of a liquid and pipetting it into the right tiny test tube.
But opioids also allow me to do things that will improve my health and reduce my pain. They enable me to do 30-60 minutes a day of physiotherapy. My physio routine is what stands between me and the wheelchair I keep in the wardrobe. My muscles wither frighteningly quickly when I don’t use them every day and that means my unstable joints have less support. I have to work MUCH harder in order to keep enough muscle to enable me to walk. Doing that while in a whole lot of pain just isn’t possible. Could you do bicep curls with a fractured wrist and a dislocated shoulder? Or walk a mile with torn thigh muscles and fractured kneecaps? I’m going to assume your answer is no. I fracture bones a lot and the pain in my spine and the Fibromyalgia pain are actually far more severe.
I also take opioids for other, specific purposes. If I want to go to the movies with friends, I’ll take my nightly Oxynorm early, so I can sit through it without pain forcing me to leave. If I can’t focus enough to know what the hell is going on, there’s no point in me suffering through it. I do the same if my pain is high and I have friends coming over. I will always delay taking it for as long as I can, because I want it to still be in effect when I have to go to sleep, but if oxycodone permits me to enjoy time with my friends, then I am going to take it.
Without ways to manage my pain, I would have no quality of life, at all. A life spent in permanent agony with no relief is simply not worth living. That’s not a desperate, depressive statement – it’s simply the truth. People have told me, “Life is suffering.” No. Life is about balancing the suffering with the good stuff. If there’s no good stuff, then why endure the suffering? I am always in pain and no amount of oxycodone is ever going to eliminate it, altogether. It’s about reducing it to a level that I can manage and still function with. I am not addicted to oxycodone, but I do rely on it in order to maintain a decent quality of life and since there’s no cure for Ehlers-Danlos Syndrome, I’m always going to need it – or whatever the next, more effective pain medication on the market may be.
Statistically, roughly 3.27% of chronic pain patients who use opioids long-term will develop an addiction. When you look only at people with no previous history of addiction (including addiction to alcohol, cigarettes, etc.), that goes down to 0.19%. You can read the journal article from which I got those statistics here: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0025656/
There’s a lot of needless fear-mongering, when it comes to opioids. When managed properly by medical professionals who know what they’re doing (like my pain specialist), they are an invaluable weapon in our fight for quality of life. Please don’t make life any harder for chronic pain patients by treating us with cynicism and disrespect.
If, after reading this, you still have a problem with other people taking medications, then you need to ask yourself why that is. We are not the problem: your lack of understanding and ill-founded prejudice against opioid use is the problem.
If you like what I’ve written here and/or relate to it, please feel free to share it, so long as you cite me as the author =]
“Me” is Kitty Kavenaugh, and I found this essay on Facebook at:
Thank you so much, Kitty!