Tag Archives for Invisible Illness

The Toll of Opioid Pain Medications

Reading this article a few days ago, gave me pause: Opioid death toll in Canada nearly 4,000 last year, new data show.

I’ve been taking opioid-based (narcotic) pain medications since the first day of the hospitalization for my illness, almost five years ago. After my admission to the hospital emergency room, the first thing the ER doctor recommended to give me for my pain was Oxycodone. My pain was so intense that I could barely talk, but I refused it because I knew taking it would cause me to become incoherent and prevent me from clearly explaining what I was experiencing. The doctor tried to convince me to take it by telling me that I needed it to control the pain so she could examine me.

I knew I couldn’t tolerate even the gentlest touch without some kind of medication to dull the pain. However, I also knew the risks associated with this particular pain medication, which at that time, was already identified as a major culprit at the heart of the opioid epidemic. So taking it, even one time, was not something I wanted to do. The doctor deferred to my concerns and instead gave me a non-opioid medication by injection that kept my mind clear so I could have a lucid conversation about my medical history and current symptoms with her. It also gave me a chance to ask questions about my initial diagnosis and what actions she intended to take to confirm it.

After all the test results came back with a preliminary (and very wrongly assessed) diagnosis, the doctor again recommended that I take the Oxycodone. By that time, I was so exhausted and still feeling such incredible pain that I relented and agreed to take it. I asked her to prescribe the lowest possible dose that would still deliver some pain relief and she ordered it. Unfortunately, even though I was taking it at that low dose, it fogged my mind. It took a great effort to concentrate enough to talk, sit up in bed, or move in general. Everything felt like it was happening around me, in slow motion, and I felt a near total loss of control.

In the following days – in a semi-private room on the surgical ward of the hospital – the doctors continued to prescribe the same low dose of Oxycodone for me. After the third day, I had to demand that they stop giving it to me because of how unable I was to make sense of things unless everyone spoke very slowly and, more importantly, I started hallucinating. The hallucinations were so frightening that during one of them – despite the terrible pain – I got out of bed to search for someone who turned out to be a figment of my drug-distorted imagination. Thankfully, the doctor on-call listened to me and prescribed another opioid-based pain medication I was better able to tolerate; and Oxycodone is now listed on my medical records as a medication that I can NEVER take.

I know that it’s been reported that many of these opioid-related deaths are because of “recreational use” of certain opioids or after a patient has developed an addiction. Still, with the high doses of prescribed pain medications I take now, I’m at risk of developing an addiction or, heaven forbid, accidentally overdosing. Because of these risks, I’m very careful about taking my pain medications exactly as prescribed. I also make sure I pay close attention to any changes in the way my body reacts to these pain medications or whether any of the known, critical side effects suddenly appear: severe dizziness and/or fainting, trouble breathing, unusual drowsiness and/or difficulty waking up, and/or seizures.

Beyond these very real and frightening concerns, I must also think about the longer-term physiological effects of taking opioid-based pain medications. I’ve been taking them in one form or another since this all started, therefore, my liver and kidneys work, and have worked, overtime for nearly five years to process these drugs throughout my body. Because of this, my liver and kidneys get tested regularly to make sure they continue to work within normal levels and won’t add more complications to my already poor health.

There’s also the possibility that the longer I take these opioid-based pain medications that they could, one day, stop working without any warning. Worse still, I could develop a condition where instead of the medications managing my pain they cause me to feel more pain. This is because “taking opioids over a long period of time may in fact increase a patient’s sensitivity to pain (hyperalgesia). This happens because long-term use of opiate painkillers causes a decrease in your ability to tolerate pain and an increase in sensitivity to pain. In fact, people taking opioids long term may keep having pain, or may see their pain increase, long after the original cause of pain has healed.”

These are some of the thoughts and fears I live with every day. With every dose of the opioid-based pain medications, I take to cope with my pain. However, I recognize that although this is my reality, I feel blessed to be alive to have these thoughts and fears.

My heart breaks for anyone who has lost their life to this health crisis and those who have been left to mourn them.

 

Sweetened Memories

Each year, on this day, my thoughts turn, with reverence, to memories of my Great Aunt M. Throughout the year I think of her often, but on this day, I spend a few quiet moments recalling her warmth and kindness toward me and all the happiness during time spent with her. As much as it saddens me that she’s gone, I’m more grateful that I knew her.

Today would have been my aunt’s 89th birthday. As I made my first meal of the day, one of the items I chose to make put a huge smile on my face. I remembered how much my Aunt M used to look forward to having family and friends from towns larger than the one in which she lived visit her because it sometimes meant they might bring her some of the foods from the country of her birth. One of those foods that I made this morning was ripe plantains, which are best described as the much larger siblings of bananas.

Aunt M lived in a small town where it was close to impossible to get many of the foods she had eaten while growing up. I on the other hand can get them all without any difficulty. Yet, I take it for granted and only buy them on rare occasions. Still, I’m glad today was one of those occasions and I’m even happier that having it brought to mind someone whom I loved so dearly.

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On another note, for anyone who’s never eaten plantains before, you can usually find them in the produce department of most large grocery stores. I gave mine time to ripen – just like you would bananas – then I peeled the skin, cut it into three equal pieces, then sliced those pieces lengthwise. I then fried the slices in a hot frying pan with organic coconut oil (you can use your preference of cooking oil). I fry the slices of plantain until they are golden brown, and then eat. Be ready for a sweet surprise…

Sweetened Memories – June 2018 – 7
Sweetened Memories – June 2018 – 6
Sweetened Memories – June 2018

Illustrating Pain

I write a fair bit about my use of art, in particular, doodling and drawing, to distract my thoughts from the pain I feel. In the past, I’ve also attempted to draw representations of how I think my pain could look. I haven’t done that in a while because the concentration it takes is not always available to me and the meditative value of unplanned, spontaneous line drawing has become a large factor behind why I do so much of it. No measuring, no choosing of a complementary colour palette, just grabbing a pen or pencil and allowing my hand to move it across the page.

About a week ago, as I was scrolling through the feed of one of my creative connections on Instagram, Dana “Jonesy” Jones, I saw an illustration she created to symbolize her back pain. I commented that I could probably fill an entire sketchbook with only illustrations of my pain. I’m actually positive that I could fill multiple volumes. However, to start with, I decided to create just one page.

For about a month, I’ve been riding the wave of an intense and lengthy pain flare up – I define a flare up as pain I measure, on the very subjective pain scale, that stays above 7 or 8 consistently – so this idea came at an ideal time. Thanks to Dana’s inspiration, I sat down and focussed on what I felt in my body: The sharp edges of glaringly bright colours trying to cut through the deepest layers of my flesh to burst free of their confines, which might, unintentionally, free me. The overlapping of sensations that are indistinguishable as they land simultaneously and pound the life out of every nerve they touch. Even on a “good” day, this pain keeps wrapping around itself and within me.

Here’s a glimpse of how I imagine my pain looking during this flare up…